Losing My Mind

Good timing

2012-02-01T20:19:00.002-06:00

Today, I was scheduled to have a tiny surgery at 11:00 to have a cyst removed which I talked about here. It was in the surgeon's office, and they just use Lidocaine to numb it first and then remove it. Just after 9:30, I received a phone call from school that Akila had thrown up. I was really bummed out on the timing, as I didn't want to last minute cancel this appt. that I had to wait two months for.

I picked up Akila and brought her home. Michael came home from work, and I had the surgery. Akila was very mellow and quiet most of the day. Dorothy, Julie and I were talking awhile ago about how pleasant our kids with FASD are when they are sick. It is sad, but it is when I can enjoy Akila the most. I should have known she was sick when she didn't kick or hit me before school today- the first day in over a month that has happened.

Sometimes, I wish that there was a virus in a pill I could give her, the common cold pill or something. Sounds cruel, I know it. But the reason I want it is good- because I really love to be able to enjoy her. As icky as I have felt today, it was nice to be around her and I haven't felt like that in awhile. 33 days to be exact. Today was the first day in 33 days that she has not harmed anyone in our family. Praise the Lord. And what great timing, considering the minor pain I am which has me a little bit out of it.

And we wait

2012-01-31T20:14:00.003-06:00

Looks like we are going to be waiting for awhile to figure out a more safe place for Akila to live. The county is not going to move very quickly, that is obvious. I called some residential treatment center's on my own. Earliest we could get a spot at one was April- just two more months of being beaten every day. Great.

If we place her on our own, our private insurance would have to pay- I haven't called them yet to see how that would work. But it would cost us $5,000 for sure to meet the deductible. And they would probably not approve her there as long as she needed to be there. I emailed our social worker on Sunday night, and was pretty honest about how it is taking every ounce of restraint I have to not smack Akila back. Wondered if they would move more quickly if I did. Wondered if I should call child protection since Akila is abusing our other kids. She did not acknowledge or respond to those questions. Shocking. Just told me it is a process and takes time. And by the way, how is Akila doing in school, she asked. So I will answer that she is doing OK in school, which makes us look like we suck. Sigh.

She is not home from dance yet with our fabulous new PCA. I can't wait. Waiting is all I am doing lately.

Hope in Him

2012-01-30T12:29:00.002-06:00

My emotions are all over the board lately. I go from being angry a lot of the time, to just plain old sad. Only when I remind myself that He is the one in control, the one who knows the future, that is when I can get my emotions reigned in. When I stop focusing on the chaos in our lives right now, I am able to see His purpose.

People with FASD are so confusing to those of us who consider ourselves as neuro-typical- if there is such a thing. They make no sense, absolutely no sense. That is one thing that those who live with and love these kids, have to come to grip with. And that is hard to do, even when you have realized it, you have to constantly remind yourself.

People will say to me all the time, why is it that she is fine at school, and not at home?? I don't know. I have some theories, but I don't know for sure. It is not true of all kids with FASD either, which is another reason they confuse us. I have one friend with two kids on the spectrum. One rages at school, one doesn't. In many ways, she says it is easier to have the one who rages at school, because at least people get it better. They just don't think that she must be doing something wrong at home.

Almost all kids behave the worst for their parents than for others. This is a proven fact, for typical brained kids. For our kids who were prenatally effected by alcohol, it is 1,000 times that. We all "let loose" with those we are most comfortable with. For some of us, that might mean just venting, for some of us, that means yelling and shouting. All depends on our personalities and our temperament. For many kids on the spectrum, this means yelling, and sometimes raging.

Akila had some rough behavior in the fall, but this month, has been doing fine at school. Why? I have no idea. She has always had issues at dance in the past years- in class and at the performances. She is doing super this year at dance. Why? I have no idea. The puzzle pieces are fitting together even less for Akila lately. It use to be a given, that if she went to spend time with someone for an evening, or a weekend, that if she did not know that person well, she would behave really well. Not true anymore. Ten days ago she spent the night with my friend who is a special ed teacher. She was horrible.

She was rude and out of line with the OT this month. Would have never happened a year ago, or even 6 months ago. She raged in front of the therapist and beat on me in front of her. She would have never done that in the past. Why? I have no idea. One theory I have, is that she is trying so hard to "fit in", to be "normal" in front of her peers, that she holds it together pretty well (school, dance); but when she is not in front of her peers, she is letting lose. She can't hold it together any longer.

Why is she so EXTREMELY violent lately? I have no idea. Is it hormones? Is it meds? Is it the fun changes that occur in all teenage brains, and are messing her up even more because of her brain damage?

What I do know, is that when she is home, she is hardly capable of holding it together. If she were capable, don't you think that going home from the hospital after being transported by the police there, that she would be able for an evening at least, to not attack her family members? I have told her that we are looking for a different place for her to live because of her violent behavior. When she is calm, she gets upset about this. She says she is going to stop, to change. I have explained that the next place she goes, will probably be somewhere where she goes to school and won't go to her same school. That she won't be able to go to dance. She doesn't like this idea, and says she will change. Ten minutes later, she is hitting.

Watching her dance this weekend, I was sad. I did get emotional. It hit me that this might be the last time I see her dance. I am not into dancing, it is not my thing. But it is her thing, and she really loves it. It is something she can do, and seem "normal". It was an emotional weekend that is for sure. I can't tell you how much it sunk into my brain, as we were driving home from the ER after a police transport, and she started to threaten to stab me. It was another reminder for me of how truly damaged her brain is. I am sad. I have not lost hope, as I still have the Lord and I know He is with us in this journey. I am sad, but I have hope in Him.

Check

2012-01-29T22:57:00.003-06:00

I don't even know how to post on today's events. Akila refused to go to church today. I told her if she didn't go that we would not go to the store to spend her token money. She still refused to go. I made the consequence very clear. We drove off for church, hoping that would motivate (scare) her into coming. We drove around the block and Michael ended up staying home with her.

Two minutes after the kids and I returned home, she was asking to go to the store. I told her she would have to wait until next Sunday, and we could do it then if she went to church. We will only go once a week to spend the money, or she wants to do it 4 times a week. Anyway, she did not like the consequence, and she got violent. Quickly. It was not pretty.

Michael called the crisis line while I dealt with her. This may sound funny, but there is a reason. I do the majority of the restraining and stuff for a reason. She is completely out of control by the time she needs to be restrained, and this is when he isn't even in the same area of the house. When he then enters the room, she goes through the roof. She escalates at the sign of him entering the room, and this is because she knows that he is the head of our household. He does come in the room, but if he does this before she is in a restraint, it is not pretty. He also has not had restraint training like I have, and is usually not in the room when the restraint needs to be started.

As I said earlier this week, we called the crisis line in our county and it didn't work that well. You first call an answering service, and it takes 15 minutes for a return call. That happened last week, and again today. When they called back, Michael told the lady he wanted her to come out. She said it would be 30-60 minutes at least. Fine. Really fine.

Meanwhile, Akila is now sobbing that she wants to go to her bedroom and calm down, which we had been suggesting forever prior to the restraint. I finally tell her I will get off of her, if she goes straight up to her room, and does not kick or hit me as I am "unrestrainng" her. This is when I am most vulnerable, is when I am getting off of her at the end of a restraint, she almost always kicks and hits me more.

Sure enough, she ran to the dining room, grabbed a heavy duty stapler to throw at me. Then tried to throw the computer printer. Then kicked and hit me. Then hit Michael in the face before I got a hold of her to put her in a hold again. As I was trying to get her into a hold, she cold cocked me pretty hard in the side of the face (cheekbone/eye area). It was a stinger, I could feel my heart beating in the area she hit.

We had had enough. We called 911 as our social worker and many others have suggested we do. Minute the police car pulled up in front of the house, she calmed down instantly. We were so blessed though that the Lord sent the right cop. He came into the house, said immediately to Akila, "don't even try to tell me that your mom and dad assaulted you cuz we're not going there". We had not said a word yet. I was impressed!!! As I am sitting on top of my little girl. Anyway, he got her to agree to not attack, which was no problem as she was instantly calmed by his presence and I knew she would not attack or do anything while he was there. That would make it too easy for us.

He told her that his 18 year old son did the same thing 6 years ago, and he was the one calling his local police to come and help. Thank you Jesus, someone who really does get it. He asked what was going on, I filled him on briefly with a crackly voice on the brink of bursting out crying. Thank you Jesus for helping me to hold off on the flood. He asked what we wanted to do. I said I would like him to transport her to the local hospital that deals with adolescent behaviors. He said OK, let's do it.

Wow, again, thank you God. I know of so many people who have had to call the police only to meet resistance. He was not condescending, but was great. Five minutes later, I was in my car and he was following me to the hospital. Yes, he followed me, and I did not like it that way. As I would zone out, I would start to speed and it was freaking me out. Haha. Do you think he would have given me a speeding ticket if I had been speeding?

Anyway, long story short, they did not admit her which is exactly what we expected. They usually will only do that if she is of harm to self or others on arrival or present that way while there. Akila was as calm, quiet and sweet as could be. They gave her apple juice, a warm blanket, and were so sweet to her. Did this bother me? Yes. Should it have? Probably not. But again, a part of me wanted her to let loose and go nuts while we were there. I wanted more witnesses. What I really wanted, was someone to actually help her. Help me. Help us.

Their suggestions were for her to:

1. Go back to the crisis home- not an option until July again

2. Give her her evening bedtime meds so she is sedated and then send us home. It was about 5:30 at this point.

3. Is there any kind of respite or somewhere else she could go?

Once I knew for sure they were not going to admit her, I just wanted to leave. Check another thing off my list that we did that the social worker is telling us to do as we wait to see if they will find an appropriate out of home placement for her. They said they would give her the meds and wait until they had kicked in before I needed to take her home. I didn't think that calling our new respite provider and having her take Akila on a school night was going to work. It would have been a lot of work to make that work, and was another stupid band-aid approach. So, I said give her the meds. What I really wanted to say, was "great idea. Give her the meds, she has never hit, punched, kicked or bitten me after she has had her evening meds."- except for every single night the last month!!!!!!!!!!!!!

Nonetheless, that is what we did. We left an hour or so later for home. I didn't say much in the car, but she did. She apologized and said she was going to try harder and that she would stop hitting us. She specifically apologized for hitting me in the face. Then, about 5 minutes from our home, she got mad as I didn't turn on a road she wanted me to. She threatened to stab me, she called me every name in the book and threatened to kill me also. Welcome home honey.

We got inside the house, things were calm for awhile, then about 1/2 hour later, exploded again. Big time. The kids were downstairs in the pool room and we were upstairs with Akila. Michael and I both went into the boys bedroom and locked the door (we have a french door on our bedroom, with a window pane that is already missing as she has kicked it out). Now, at this point, I am very thankful we live in an old house with solid doors. Cuz she gave the door a run for it's money!! She kicked and swore and hollered and bellowed and went absolutely nutty. We just stood there looking at each other in amazement. I was wondering how long til she tries to start breaking things, or comes up with some other idea. After probably 10 minutes, she started to threaten that she was going to go downstairs and attack the kids.

We listened to her start to go down the stairs, but she was bluffing. She came right back up and thought we didn't know it. She went nuts again. Eventually, we risked it and came out. A few punches later, and she was done, for the time being. The rest of the evening was up and down, and it is only by God's grace that I got her to bed. I am so thankful for Monday, it is 30 minutes away- and for once it is a 5 day school week.

I did want to say that the Dr. that we eventually saw at the hospital (a Psychiatrist), was good. He told me a few things that were exactly what I suspected. He gave me some advise. He was not at all rude to us, or judgemental for us to be there. I know other people who have been in the exact chair, I mean same physical chair I was sitting in, and have been given the run around. He acknowledged that we are playing a game, and that we just need to keep at the county and he even put in his report that Akila needs out of home placement.

It was not a fun day. By any means. But I am thankful I had the opportunity to go to church (sad Michael couldn't), to be lifted up in prayers by so many of you, and I am also glad that God was putting the right people in place today to make what we went through more bearable.

To see or not to see

2012-01-28T00:49:00.002-06:00

Akila did great tonight at rehearsal. I am very glad, although, sadly, there is always a tiny, very tiny, part of me that wants others to see the stuff I blog about and share about. I know sometimes people think I must be stretching the truth, or even doing something wrong, when she behaves so well in public.

We were there from just after 4:00 pm until 10:00 pm. She was back stage the majority of the time, and according to the back stage moms, her behavior was good. She danced nicely, and was where she was suppose to be at the right time. At the ticket table, I was talking with some dance moms, who are aware of Akila's issues, and even read the blog from time to time. They laughed with me about how every time they see her, she is so nice and polite.

I am truly grateful that the majority of the world does not get to see, or have to see, her challenging side. But there is that ever so tiny part of me that wants people to be able to see it. Like I blogged about the therapist witnessing her issues just over a week ago. Yet, when people do get to see it, it is embarrassing and frustrating. I guess a good number of people have seen some of her edginess. I am guessing they will tomorrow. But what they see, is her coming up to me at the ticket table where I am working and being a demanding snot who will get quite mad if I don't give her what she needs. That is about the most they usually see. Unless they want her for a weekend. Then they would see more. Anyone game? :)

Dance

2012-01-27T14:56:00.003-06:00

Akila will perform in two dance productions tomorrow. Tonight, she has dress rehearsal. She loves to dance. I work part-time at the studio, and will be working all night tonight, and all day and night tomorrow. I am praying that it goes well. She has been behaving really well at dance this year, unlike past years. Strange, when the home front has been so rough, but things never make sense with children prenatally effected by alcohol.

I am hoping to make it through the next two days (she loves to seek me out and act horribly during these events), and I am thankful that Michael and the other 3 kids will have a break from the madness.

Really hard

2012-01-26T08:12:00.003-06:00

Some days are harder than others, some weeks are harder than others, some months are harder than others, some years are harder than others, etc. January is coming to an end, and it has been a hard month. A really hard month.

I have been reflective this past week, on the challenges God has blessed us with. Sometimes it is hard to see through the forest, and to see the challenges as a blessing. Really hard. But when I sit back, spend some time in his word, I am able to see the blessings. I don't see them all, yet. I know that He has some more to reveal to me that I am not yet ready for.

I know that sometimes I may seem whiney or negative on my blog- but that is mostly due to my commitment to be honest and open about our life living with a FASD. And during all of the challenges, which are in the 100's every day lately, I need to keep reminding myself that Akila did not ask for this, nor deserve this. When I start to get overwhelmed, and feeling really bad for myself for all that I have to put up with, I try to step back and feel what it would be like to be her. Sometimes, this is hard. Really hard.

I think of what my body physically feels like when I am angry. Honestly, this has happened very few times in my life. Where I am truly angry, yelling, and agitated. As a matter of fact, as an adult, I can't remember every feeling as angry as Akila is on a daily basis. I am a very laid back and calm person. But when I am angry or stressed, my body does not respond well. I get lower back pain, headaches and just feel yucky overall. When Akila is home, lately, she is angry at least 50% of the time, and I think it might be higher than that.

This morning, right before the bus came, Akila asked if I could drive her to school. She did not ask nicely either. I was in the last few minutes of my countdown to when she would leave. Not a good feeling, but it is where we are at in life right now. I told her I couldn't. She got mad and demanded to know why. I told her because I needed to shower and get to a meeting. She pushed me and yelled, "you should have told me that!!" I wanted to say, "I just did!!", but I did not respond.

Right before that, she wanted some gum. The OT says that anytime she can chew gum, is a good thing and the bigger the better. Double Bubble, Bubble Yum, that kind of gum. So I let her have some each morning to bring to school. I was out of the certain flavor that she was craving today, and she went crazy yelling at me about this. Smacked me a few times and pushed me as well. Then, when the bus finally came, she told me to eff off as she went out the door. I bit my tongue as I had several things that I wanted to respond with. I just closed the door, breathed a sigh of relief and sat down to reflect.

Her life is not easy. She has not one friend. I think she tries so hard the entire school day, to be "normal", to fit in, to abide by the rules, that all the rest of her time, she is a total mess. That is not to say, that on days when there is no school, she is great during the daytime. Normally, the daytime is her best time, thanks to some help from meds. But lately, when she is at home, even during the day, she is horrible. She wants so hard to look "normal", yet she doesn't all the time. She has a hard time caring for her hair, and also allowing me to help with her hair. She wants me to do it, but won't let me help care for it each day. A few weeks ago, she came home from somewhere with a sample of fingernails that were glued on to a nail file. I think she stole them from a respite provider who does nails. She used her nail glue, and applied them to her nails. They were the long, skanky looking kind (sorry for the judgement, but that's my opinion). Each one was a different color, and had a number on them. Tell me that didn't look totally goofy. Imagine, being in the position of telling your daughter to take off those nails which are glued to hers. What would you have done? I let it go. Least of my concerns lately. Do I sound defeated? A little. I am picking my battles more carefully than ever.

This is my daughter who eats alone at lunch. They have tried to have other kids sit with her, sometimes she has lunch mates. Most often not I think. And Akila is actually fine with this, it doesn't seem to bother her too much. It breaks my heart. It is a reminder of how hard her life is.

I think of her future, and how hard it is going to be, and I don't mean for me. For her. It is going to be hard. Really hard. As parents, we try so hard to make life "easy" for our kids. We don't want them to make some of the mistakes we made, so we try to teach them the "right way" to do things. When I was newer to this parenting thing, and more naive perhaps, I use to pray that things would go smoothly for my kids, and that they are able to enjoy the Lord's plans for them. But the truth is, that we don't know what He has planned for them. I would never have guessed in a million years when I was 10, 17 or 27 that He had this life planned for me. I know He has a reason for choosing this life for me, many reasons actually.

Now, I pray that he equips each of them for the easy and the hard. The really hard. I pray more often for Him to give them (and me) grace as we swim through the tumultuous waters, rough waters yet to be revealed (I know it is going to get more challenging with Akila, not easier). I pray for the Lord to give me the wisdom to teach and guide them through this current situation, which is taking a tole on all four of our kids. I pray that He uses this to make all of us stronger in our faith, and as a reminder of our need to rely solely on Him. When I start to think about how hard this is for Akila, or for me, I think of how hard it must have been for Him to sacrifice His only son. To watch him die on the cross. It must have been hard. Really hard.

Disaster preparedness

2012-01-25T08:15:00.004-06:00

My friend Kari wrote a blog post a few days ago titled, "I look ahead and I cringe". She talked about the future and how scary it can be for our children with FASD and the people who love them. She had received a phone call from a mom of a son with FASD (around age 20), who committed suicide. A fear that many of us have.

Last night, I received a phone call from a mom of a 18 year old daughter who has FAS. Her daughter has been in a crisis home for 9 months waiting for a group home spot to open up. This mom received a phone call last night that her daughter was found with a young man, both of them with all their clothes off, having sex. Her daughter has an IQ of 56. She is devastated. The young man is a client also. Her daughter was being brought to the hospital for tests and stuff like that. This mom was on her way to a program with one of her younger children so she did not go. The staff's response were not all that concerned about the situation, the daughter is after all, an adult.

This is such a hard situation, and one I easily know we could be facing in the future. Even knowing that things like this are more than likely in our future, does not mean that each bump in the road does not break your heart. As I said yesterday, we have known for years that Akila probably will not be able to always live in our home. We know that we are at the point now where she needs an outside placement. Doesn't mean it doesn't hurt. Big. Time.

But it does help to be prepared. If we hadn't prepared ourselves for this, we would not only be dealing with pain, but shock and surprise as well- which only makes the pain more deep and painful. I have always said that I would rather be wrong on the things I know might happen in our future, than be taken by surprise and knocked off of my rocker when my head is turned. If I hadn't known this was in our future, I wouldn't have applied for MA and DD case management, and would have very few options for help now.

Often, when you work with a therapist or counselor, they put together a crisis plan. You are "preparing for disaster". This usually consists of how to keep family members safe when a rage occurs. Another aspect of disaster preparedness, is setting up the support system that you need to be as successful as possible with your child (all your children). For us, this included applying for MA through TEFRA, applying to the county for DD (Developmentally Disabled) Case Management, doing the counseling, the OT, the respite, etc. Many of us never went into parenting thinking these would be things we would be preparing for, or services that we would use. But they are vital to the success and safety of our children.

I thank the Lord for helping to open our eyes over the past several years so we are prepared for as much as possible. Many people prepare for disasters, but never need to put their plans into effect. Well, as I said, that would be awesome! But be prepared. I am by no mean saying that the mom who called me yesterday was not prepared. I think in many ways she was. Today, my heart is breaking for her and her daughter.

Abuse

2012-01-24T08:21:00.002-06:00

There is no doubt we are living in an atmosphere of abuse. When you watch a movie where a woman has a husband who abuses her, and possibly the children, they often show how much they dread it when the abuser comes home from work or somewhere else. They also show the relief when the abuser leaves. That is our life right now.

Yesterday was day 26 in a row of serious aggression. Never has it lasted this long in the past. All she does the entire time she is home is cycle up and down. And when she is up, she is physical and totally out of control. I have been talking with our social worker, but as many of you know, counties move slowly. It seems like the more desperate you are, the slower they are.

Last night, after she had calmed down from her 2nd rage of the evening (and she did not get home until 7:30- she was at dance with a PCA), I was helping her to get something. I can't remember why, but I said thank you to her. I got yelled at and was told not to say thank you to her.

Another scene which was classic to a movie, was when her new PCA brought her home from dance. She was in a good mood, really positive and nice. She was hungry but wanted to wait until the PCA left before she ate. I started to warm up her dinner before the PCA had left and she told me to wait as she hadn't left yet. I waited and once the PCA left, she turned nasty. Extremely nasty. Similar to in the movies when a friend, or even the police arrive, and the abuser turns on their sweetness, and as soon as they leave, they let go.

I know that I am very open and honest in my blog. Some people criticize me for that. I get that. There might be a time when I need to go private, or have fake names. The time is not here now. Right now, I can't tell you how many emails and comments I get from people who appreciate my honesty and are living similar lives and are relieved to know they are not alone.

We have known for years that Akila might not be able to always live in our home. We have been trying to prepare ourselves and the other kids, and even Akila for that for years. We know we are at that point. But unfortunately, we are having to play the waiting game with the county. They have procedures and funding limits. Those things are incredibly hard to understand when you are desperate, which we are now.

Akila is with a PCA this week Mon-Wed in the evenings and we have them working with her out of our house. Thursday and Friday evening, she has dance rehearsals and all day Saturday, she has dance performances. Sunday afternoon and evening is a time we need to fill. It does not work to be in our home for more than an hour or so with her. Last Sunday was a nightmare. The day of rest. There is no rest for the weary, that is for sure. We do appreciate all of your concern, and especially your prayers.

The battle continues...

2012-01-23T14:41:00.002-06:00

A friend of mine who has been a special ed teacher for 22 years and is excellent, took Akila overnight on Friday. I am so blessed to have friends and people in our life who are willing to help out in different ways. I picked Akila up around lunchtime and had to bring her to the dance studio for Winter Show rehearsal which was from 1:30-5:30.

After dance, she and I went to Target to spend some of her token money. We didn't get home until probably 7:30 from that. The day was almost over, phew. Made it through another one. We are living in the moment, hour to hour, trying to get by without a rage. Every hour without a few rages, is a huge success.

Yesterday, we went to church, came home and ate. Michael was going to bring the boys to buy some weights for their cars they are making for the Grand Prix race at Awana's, and Imani went with them all. It was just Akila and I. Typically, in the past, this would work out great. Not yesterday. She wanted to invite a friend over to play with. Couple of problems with this. One, she has no real friends. Our neighbor girl will come sometimes, but last time she was here, on Jan. 1st, Akila was horrible and it was a nightmare. She cannot handle having a friend over. The other friend she has, is a sweet girl who's mom had a sibling with FASD. She is great with Akila, but I know last minute things don't work for her family. But the main problem, is that with her behavior lately, we can't bring an outsider into this chaos.

I offered to play with her. I have stated before how much I dislike playing with Barbies and dolls. But lately, with how out of control she has been, it is an absolutely horrible option for me. I am too frustrated with her to sit and play. But I will. I am can bite the bullet and do it. I offered to color with her, or do any number of other things. I asked her to bake something with me. Nothing would work, to de-escalate where she was heading. Strike that. If I agreed to having a friend over, and let her have her way, she would have turned into an immediate angel. I did not.

Eventually, she escalated to violence. Several warnings, several attempts at calming techniques (yes, I was using the calming techniques on myself yesterday. Somebody needs to use them!). I finally had to restrain her. Michael and the kids were gone for 2 hours, and she cycled up and down the whole time. She finally close to an hour got off the friend idea. Then she wanted me to go into the basement and find a new toy for her. She thinks the basement has a magical stash of things. I said no, that she had gotten a new Barbie this week, and we could play with it. She raged. Then she wanted to go to the dollar store. She had $1 left from Target the night before. I said no, we only spend the token money once a week. She raged more.

They all arrived home, and Akila raged more. I finally got her to settle down and color with me. We were in the dining room doing this for awhile. She also played with her Nintendo DSI for awhile. Imani has been playing Barbies each evening the last 1/2 hour before bedtime. We finally got to that time, and I was relieved. For a little. Imani ended up losing her patience with Akila and quit early. Akila did not like this at all. She blew up. Big. Time.

Michael and I were both trying to help her to calm down. He got hit in the face and his glasses were bent. I had to restrain her finally. She was really out of it. We finally decided to call the county crisis line, which I had thought of doing all day. I forgot it was an answering service and you wait for a call back. As I was restraining her, she started to freak out about them coming. She said if I got off her she would go to her room, which we had calmly been asking her to do the entire time. I got off of her and she started to hit and kick more. I restrained her again. She is really strong by the way. I was literally sweating by the time it was over.

After another 5 minutes, she said she would go to her room. I got off of her and she went, after she threw her shoe at me. I had to restrain myself from going after her. For real. She went to her room, and cursed and yelled from her room for awhile. I asked Michael if he would go check in with the kids, especially Imani. I was worried that she would blame herself since Akila raged when she quit playing and wanted us to make Imani keep playing with her. I started doing dishes waiting for the crisis team to call.

The phone rang, the lady asked me what was going on. I couldn't talk. Started crying. It was great. Finally told her. She asked if we have a therapist and psychiatrist for Akila. I said yes. She asked if the therapist has given us ideas of what Akila should do when she is upset. I almost threw the phone across the room. I restrained myself. I know this is an OK question. But I am sick of people asking if we know how to calm a neuro-typical kid. I read the list to her and told her how the therapist was over on Thursday and watched Akila hitting and kicking me and said there was nothing else she could think of that I could try.

She asked about med changes. I cried more. I told her that we changed a med on Thursday, but that is not the reason for this behavior. I told her it has been going on daily since Dec. 29th and that the med had not changed her behavior. She asked if Akila would talk to her. I said I would see. I brought the phone up to her room. She wouldn't open the door because she thought they were here and were going to take her. I finally talked her into talking to them.

I could hear the conversation, and it is hard to remain quiet. She asked Akila if she had thrown anything and Akila said yes, then no, then said that I grabbed from her what she was going to throw. There were a bunch of Akila's answers that were inaccurate, very inaccurate. Before I had went to bring her the phone, Akila had stopped yelling and swearing and was kind of quiet. When she was done with Akila, I got the phone back. The lady thinks that she settled Akila down. I tried not to laugh in the phone. Akila had told her that she likes to knit when she is upset so they made a deal that Akila would knit. HAHA. Akila does knit sometimes, but not when she is upset. As a matter of fact, I make sure the weapons- AKA knitting needles- are not in sight when she is upset.

We got off the phone, and she did not want to knit. I got her a bedtime snack and then tried to get her to bed. Around 10:30, she was still awake and I realized she had her DSI in bed which she knows is not allowed (she rarely plays with her DSI). I asked her to give it to me and she would not. I gave up. I was not about to have a power struggle with her about this. I was pooped. I came down to type an email to our social worker and then I went to bed around 11. She yelled down for me to get her some food. I said no. I went to bed. She came in my room and wanted some more sleep meds. I brought some to her. But she refused to take them with water, she wanted juice. I was done. I set them down, and went to bed.

I heard her go into the kitchen, get some more food to eat, and then go back to bed. I have spent the day emailing and calling our social worker and doctors. Trying to get some balls rolling more quickly. Things need to change. Soon.

Y'sly

2012-01-21T10:53:00.002-06:00

When the therapist was here on Thursday night and all Akila did was cycle up and down for two hours (actually, she did this for over 5 hours, from the minute she got home from school until the minute she went to bed), we had a typical "Akila moment".

During one of her semi-down moments, she wanted me to tell the therapist about Y'sly. I asked what Y'sly was. She said, "you know, Y'sly!" I said I couldn't remember Y'sly, and needed her to remind me. She just kept on saying, you know, and getting more agitated. This "Akila moment" happens usually once a day, sometimes more. She will not just tell you what she is talking about, she will just keep saying you know, and getting more mad.

I was standing there and trying my hardest to figure out what she was talking about. All I could hear in my head was Y'sly, and it didn't sound like a word to me. The therapist was trying to prod her for info to help me out, and she just got more mad. Finally, I figured out what she was saying. She was saying wisely, but the word alone with no context meant nothing to me, and by this time, after several hours of cycling up and down with her, my brain was mud.

Here is what she was referring to. Her class was going to a program called Financial Park, run by Junior Achievement. In the younger grades, it is called Biztown. The kids go and spend fake money, write fake checks. They all have a different role in the business. Akila has been telling us all week that she was going to be an Architect and make $98,000/year. She also told me she was going to bring $98,000 in real money home on Friday. I told her I didn't think it was real money earlier in the week and she got very mad at me and called me stupid. I said ok, that will be great if it is real money and left it at that.

When I saw the school staff on Thursday, I asked them to make sure that she understood that it is not real money. One day this week, she told me it would be a check for real money, so I was anticipating her coming home with a fake check and freaking out that we should go to the bank and cash it. She did come home from school yesterday and tell me right away that it is not real money. I acted surprised and sad.

Back to the "Akila moment". In the profile of the Architect, it said she was 43 years old, had an 8 and 5 year old, drove a Chyrsler Town and Country minivan. It listed her bi-weekly pay check amount (one I would die for), and it stated that she had invested her money "wisely" and it listed her stocks and investments. This was the "Y'sly" or "wisely" I was suppose to be telling the therapist about. Wow, the way her brain works is amazing. She thought that I would remember that tiny detail and that it was important to tell the therapist. And I got plenty of attitude when I finally figured it out. Was called stupid and got the snotty eye roll. That doesn't bother me at all, it is the least of our concerns.

Akila stayed over at my friend Lynne's last night. She called Thursday night asking how she could help and offered to take her for a night. I of course don't say no, ever really. :) Lynne is a special ed teacher so I think this will be a good learning experience for her, not to mention that she is well equipped to deal with the sweet thing. Lynne called me last night and had some excellent observations. We are so blessed to have people in our lives who are willing to help out and are willing to put up with a lot (I was just on the phone with Akila and she was giving Lynne a run for her money!). I have chosen my friends "wisely".

A witness...

2012-01-20T09:31:00.002-06:00

Last night Akila's therapist was scheduled to come from6-8 and work with her. She meets with her once a week in school, and has now started to come to the house once a week also. A few weeks ago over winter break when she came, she brought Akila to the library. Last night Akila asked her to take her to the library and the therapist said they weren't going to do that tonight, and that was something she could earn with good behavior and practicing her calming skills.

Oops. That didn't go over too well. She said no to Akila. Akila no likey. Akila went nuts. She came into the kitchen where I was and started to complain that the therapist wouldn't take her to the library. I of course backed up the therapist which angered her even more. Then Akila thought I should take her to the library. I said it wouldn't work tonight, but that we could do it the next day after school if she made good choices tonight. Akila no like once again. The therapist had also came into the kitchen with Akila. Therapist and I tried to de-escalate a girl who was escalating quickly. Akila no likey.

She started to get very angry, verbally abusive and started to push me. The therapist tried to distract her, and was met with some very verbally aggressive language, name calling, etc. Therapist took the cue and stopped talking. I pointed to the calming techniques on the wall (the post-it notes), and asked Akila which one she would like to do. She kicked me. I asked her if she thought it would be a good time to go to her room and take a break (I am not suppose to tell her to, as telling her what to do is a trigger...). She stomped on my food with a bunch more verbal slams.

I stayed very calm, as I have been praying for the ability to stay calm when she is acting like this. Last summer, by the end of the summer, I had not much calm left in me and I was losing it quickly, had a very short fuse. Since she has returned home, the Lord has been gracious and given me lots of patience and the ability to remain calm. I am very thankful. I tried several things to distract her with, to no avail. The therapist would try once in awhile, to no avail. After about 15 minutes or so of this, the therapist told Akila she was going to the living room and would wait for Akila to be ready.

Oh before that, she moved from perseverating on the library, to the dollar store. She wanted to go and spend her token money she has earned. I also told her that we could possibly do that the next day, if she could calm down and participate with the therapist. Eventually, she went out and played a game of Uno with her. Then she came right back to me and perseverated on going somewhere. Michael was working late and she even called him to see if he would take her somewhere. He said he would be at work too late.

At one point, she switched her obsession from going somewhere, to finding a charge cord for an old cell phone that she has. We don't have a cord for the phone that fits it. She has at least 5 old cell phones, and cords for most of them. But not for this one. She then went nutty about that. She eventually went to the basement to look for a cord. She was convinced that my mom had the same cell phone and that we have the cord. My mom passed away 7 years ago next month, and I never had her old cell phone. But she wouldn't listen to reason.

I was glad for the break, so the therapist and I could talk. I really like this therapist, but she told us upfront that she wasn't sure what she would be able to do to truly help Akila. I like her honesty, and not putting up a pretense that she can fix Akila, like so many other professionals do. I told her, that what she was seeing was mild, that Akila was actually holding back a bit for her, and that she usually gets even more extreme than she was seeing. She was thinking that already. I told her that I was glad she was staying and witnessing the behaviors as she asked if I was OK with that. I asked if she wouldn't mind documenting what she was witnessing and sending it to our social worker. She agreed to that with no problem.

Akila has been "pissy" with her on more than one occasion. She has seen Akila's edge and attitude, but we have never really had a witness to the behaviors that were observed last night. I wasn't even really stressed during the whole two hours of ups and downs. I just kept thanking the Lord for having a witness.

When the therapist and I had some alone time, we were talking about how sad it is for Akila that she is just so stuck in this anger mode, and can't enjoy the life that she has. The therapist said that she loves to come to our house as it feels so good and positive, and that she is sad that Akila can't enjoy that. That was nice to hear, because no matter what, you sometimes wonder what people from the outside are thinking looking in.

The last 1/2 hour she was there, she got to see Akila move on to perseverating about playing with Imani. Imani said she would play with Akila at 8:30 (Imani has been playing with Akila the last 1/2 hour every evening to help us- she is fabulous!). Akila no likey. She went nuts again. She kept on very rudely telling therapist to leave and several other nasty things.

On another side note, here is a funny story. Between 3:30-6, before therapist arrived, we had several issues also. Akila went after Zeke and was trying to attack him. I got in between them, got her out of the room, and tried to distract her. She hit, kicked and pushed me several times during this. I grabbed her arm one time when it was swinging at me and she went nuts because I touched her. I pointed out that I was only blocking her from hitting me again. She got really mad and said she didn't hit me. I said you just hit me 3 times in a row. She honestly didn't think she hit me and went nuts. Then she said, with a ton of attitude, "I didn't hit you MOM, this is called punching" as she showed me how she punched me. Gotta love that concrete literal thinking brain of an FASD kid, doncha now?????

Legal Aspects of FASD training

2012-01-19T14:14:00.002-06:00

I attended the Legal Aspects of FASD training yesterday. It was put on by my friend Jerrod Brown's organization, The American Institute for the Advancement of Forensic Studies. It is a new org that is up and coming! I will be doing a training for them in May on FASD and impulsivity, more info to come.

The trainer was retired Judge Tony Wartnik from Washington state. I was fortunate to spend time with him at a meeting on Tuesday as well. He is an amazing man, who truly understands FASD, a rarity with people in general, especially people of his age group, and especially of judges.

One thing that he made abundantly clear, was the importance of diagnosis. We know that research shows that 60% of people on the Fetal Alcohol Spectrum will get into some trouble with the law. I will not bury my head in the sand, there is a good possibility that Akila will some day. It sounds like there are some judges and lawyers, who are starting to have a basic understanding of FASD. This judge talked about how incarcerating young people with FASD, backfires big time as they come out worse than when they went in. This is true of many people, but especially true of people with FASD.

He also talked about how our kids are almost always involved in committing crimes in groups, and how they are not the leaders of the pack so to say. If it is a shoplifting, or a car theft, they are often alone, but the rest of the types of crimes, they are usually following the lead of more sophisticated kids. He was able to site a good number of cases that involved FASD kids and their families who have been paving the way.

I know someone else who recommends that families like mine, save money each month to keep in a legal fund for the kids in case of future problems. I have another friend who has spent thousands on legal fees in a fight with their county, a ridiculous fight that should have never happened. It could easily happen to us.

Judge Wartnik was very knowledgeable, and very compassionate. He is willing to have us email him with questions if we ever find ourselves in a sticky legal situation and need some advise. He actually is the Legal Director of an org called FASexperts. They have a doc, legal expert, neuropsychologist and psychologist who can be hired to testify in trials.

He talked about the challenge of courts looking at the IQ for mental retardation status, and how the overall IQ is not a good way to look at people with FASD. It is vital that the AQ, Adaptive Quotient is also looked at. AQ measures ones ability to function day to day without support in the areas of communication, socialization, daily living, time management, employment, etc. A person with a low AQ rating might have difficulty with impulsivity, inability to plan or follow directions, and an inability to say no. They often get in trouble with the law. This low AQ can be considered an adaptive mental disability and can result in significant problems managing daily living skills.

He had a case study of a girl, that sounded just like Akila, check this out:

Bulgarian, adopted at age 2, IQ 80+, prenatal exposure unknown
2002-2007 (age 17) 17 assaults, weapons, cruelty to animals and 5 malicious mischief offenses.
Severe, rage/tantrums, highly impulsive, threatening and aggressive, destroys property, noted weakness in social judgment/knowledge of conventional standards of behavior
severe physical/emotional neglect at Bulgarian orphanage
Declared at-risk youth (age 12), continually in and out of detention and group home facilities (inability to follow court orders/ruled of group homes)Akila is 12 now, and possibly looking at out of home placement
School performance at 2nd and 3rd grade levels in reading, spelling and math
FAE is suspected (this is the former term for ARND, which is what Akila has on the Fetal Alcohol Spectrum)
Diagnosed at age 5 with ADHD, RAD, PTSD, Mood Disorder NOS, Intermittent Explosive Disorder, Learning Disorder in Math, estrangement from adoptive parents and relational difficulties with peers.-Akila would have been diagnosed with all of these if she were not diagnosed with FASD, which encompasses them all practically!
Hyperactive, hypervigilent and needing to be in control prior to age 5
Tried 13 different prescribed meds for her conditions with little or no benefit.-as of today, we are trying number 12

She also does not fit the 2nd bullet, but she could by age 17, and especially if she were not diagnosed and if we as her parents did not understand what we are dealing with. I am so thankful that we did learn when she was 6 that she has a FASD.

There is so much peace in naming something. It helps to know how to deal with it, and it takes some of the burden off of your shoulder as a parent. To all my friends out there, if you are suspecting FASD, please seek out a diagnosis. I probably am averaging getting a new email from one of my awesome blog readers every two weeks asking questions. Know that you are all welcome to do that anytime. I know that it was of great help to me in the beginning (and now) to be able to ask questions of someone who was farther along the journey than I was (and am). I don't always get back to you immediately, but I will at some point.

And for any of you newbies, I strongly recommend that one of your starting points should be the Damaged Angels book by Bonnie Buxton. It is linked to the right, and if you buy it through the link (or anything from Amazon through the top link), I will get a tiny kickback and I greatly appreciate it. I do recommend buying it as opposed to getting it from the library, you will refer back to it again and again. And if you're like me, you will buy more and hand them out like candy to your OB/GYN, Pediatrician, neighbors (right Kathy!), friends, relatives, OT's, etc.

Arrgghhh...

2012-01-18T21:42:00.002-06:00

We are in a tough place right now. We are working on things behind the scenes, but everything takes time. And time is a hard thing right now, as Akila is on fire all the time when she is home. We have one PCA and she has cut her hours to one day a week. Looking for some new ones, but it takes time.

Last night, Akila had some time on the computer earlier in the evening. She then wanted more and I reminded her that she had used her time already and that I would help her find something else to do. She escalated. Immediately. She went straight to hitting, punching and kicking. Immediately. I was sitting in a chair in the living room, and she came right up to me and started kicking and got right in my face, which was hard to do as I was sitting.

I remained very calm. I reminded her of some ideas to calm down, take a break. I stopped talking, and stared at a spot on the wall, while she sat and rambled on in a very angry voice about how I am ruining her life. She attempted to hit me in the face a few times. Sometimes when she does this, she tries to get as close as she can without hitting you, just to tease you and make you flinch. I am pretty good at not flinching much, but a few times this is when she has hit me. It is such a fun game.

Super Nanny says not to communicate or talk with a child who is acting like this, as they are wanting the fight. With Akila, it infuriates her when you don't talk and she gets even more angry. I eventually got up during this fun situation and told her I was going into a different room to take a break. She followed me hitting me in the back and kicking me. I warned her that I was going to have to restrain her if she kept on hurting me.

During this fun situation, which lasted for sure 53 minutes (that is when I started to time it), the other 3 kids came in and out of the area asking homework questions and other things. It is so strange that this seems "normal" to them. Michael came home during the fun and was super awesome. He was very calm as was I, and he kept on trying to distract her. He was wanting her to try a mint and stayed calm while she was being rude.

Eventually, I had to restrain her as she would not stop attacking. Michael came in and helped me to restrain her, which escalates her even more. When we were done restraining her, she sat on the floor trying to calm down. After a little while, we were talking to her about her behavior. She told us that we need to restrain her as it helps her to calm down. But I think she heard us saying that is why we tried OT. Several people had wondered if she raged so she could get restrained as a sensory outlet. The OT we saw did not think so, nor do I. But now she thinks that cuz she heard others say it. Great.

At bedtime last night, she threw a headband on the floor in anger and then rudely commanded me to pick it up. I nicely told her it could stay on the floor or she could pick it up. She got very mad, and pushy, and kept on commanding me to pick it up. Now, I just hate this situation more than you can understand. I really just want to pick up the blasted headband so she will go to bed and not get all agitated which is going to mean a minimum of 30 more minutes before I'm done messing around with her, but more like 60 minutes. Everything in me wanted to pick it up and get her to bed. But I didn't. We went a couple of rounds and eventually, she went to bed with the headband on the floor. It was 43 minutes later. I have been getting into timing our escapades.

Tonight was a decent night. I was only kicked once, pushed 4 times and hit three times. You know life is interesting when that is a good night.

Fun with wallpaper (NOT!)

2012-01-17T14:53:00.004-06:00

I had the kids randomly start peeling wallpaper in my kitchen awhile ago. Well, to be more specific, at least 7 years ago as my mom was alive when they started. It has never been finished. At one point, we were forced to re-do our upstairs bathroom due to mold issues and that took some time. Then I had to work on wallpaper in Akila's room, and that took me a few years. Have I mentioned that I hate wallpaper? With a passion. I think it has a certain level of evil in it as a matter of fact.

When we bought our house 9 years ago, every inch of the house except one bedroom was wallpapered. It still mostly is. I have peeled wallpaper from two bedrooms, and one bathroom. And am now trying to finally finish the kitchen. The kitchen had 4 different wallpapers in it alone. It was very busy. And underneath the busy maroon based wallpaper, are some very BRIGHT orange/peach color, and some walls which are in very bad shape. Every time I peel wallpaper from a room, I am reminded of why the previous owners (who are really cool) probably put wallpaper up- the walls are in rough shape. We stink at patching walls also, so hopefully it looks OK in the long run.

Akila was gone in respite all weekend, it was a nice break. That is why she is not pictured above helping (although she may not have helped even if she was home, would depend on her mood- which has consistently been horrible lately).

Paperwork

2012-01-17T14:46:00.003-06:00

I am an abstract random kind of gal, but in many areas of my life I am organized- doesn't make sense, I know. I am almost always on time, and I am very organized with my schedule. Paperwork, I am up and down with. I am amazed at my friends with large families and how they keep track of the paperwork. This is the stack of paperwork that has accumulated Akila since Sept. 1st., and it is just for Akila.

Many people who have kids with special needs keep their info in a binder, I filled several binders many years ago and gave up on that route. Now I just organize it by type (school, medical, OT, crisis home, county, MA, etc.) and stick it in a folder. But I let it stack up before I do that, and I need to just do it as I go. Stacks of paper start to stress me out. Between Akila, the trainings I have been doing, my part-time dance job, the other 3 kids, the committees I am on at Children's Hospital, finances and a billion other things, the paperwork has over taken my dining room and I need to devote some time to organizing.

I will do that, someday.

Angered so easily

2012-01-13T22:54:00.002-06:00

My title is not talking about me. I have to admit that I am a very patient mom. I am generally not a patient person, but the Lord has taught me much in the area of patience being the mother of Akila. I am talking about Akila being easily angered.

Here are a few examples. Last night, she had a school concert. I went by myself as Michael had to work late and it did not sound like fun to the other kids- they are pretty burnt out right now, we all are. After the concert, Akila was walking through the theatre in front of all her middle school classmates holding my hand. I didn't think of it at first, I am so use to her grabbing my hand. We were walking through the lobby and were close to the door. Very few people were around and I said, "do you want to put your mittens on? It is cold outside." She had taken my mittens to school yesterday with my permission and was excited about them. This girl, who 10 seconds ago was holding my hand with the sweetest smile, gave me the look of satan, got very mad, and elbowed me in the ribs. She would have done more if there were not people around.

Tonight, she went to a respite provider for the weekend. Thank God, praise Jesus. We need a break. I had already helped her pack her clothing bag, and we went upstairs to put a doll bag with Barbies and dolls. When we got to her room, I asked her if she would like to take Jonathon with. Jonathon is her new doll, a boy doll, that she got for Christmas and has been playing with the most. She went nuts. Started hitting, kicking and pushing me. I asked what the problem was, and all she could say was "you". I asked her to tell me why she was angry, but she was not able to.

These two examples, happen at least 10 times a day lately. Out of the blue often. Things are going fine, and boom, she is mad over the piddliest thing. Sometimes, she gets mad because I said something like "yes mam", or call her something like "honey" which I have done forever. Sometimes, it sends her through the roof and I get a tongue lashing for being the stupidest mom ever. Often, her anger is over something that she asked me to do. That really throws me for a loop. She will do something like ask me to turn the light on, I will turn it on, and then she will yell at me. I then ask her to repeat her request, she will, and I will say isn't this what you meant? Didn't you just ask me to turn the light on? She will say yes. I will ask then why she is mad. She has no real answer, just gets more agitated and yells more, and escalates.

If you would have told me 10 years ago that I would have a child behaving like Akila, I would have told you that I would have no patience for it and that I would anger easily if a child was saying and doing some of the things she does and says to me. I am not saying I don't lose it, because boy do I ever sometimes. But for the most part, I remain fairly calm, at least for the first hour or two. That is why weekends and non-school days are rough. That is why I love Mondays and am not a big fan of non-school days. Well I am not at all a fan of them to tell you the truth. This is a 3 day weekend, and I am so thankful that she is in respite until Sunday at 1:00. The other 3 kids all have a friend sleeping over tonight, and tomorrow, we will relax.

Short shorts

2012-01-13T08:23:00.004-06:00

This morning, Akila asked me where her shorts are. I asked which shorts she is talking about. She yelled very angrily, "MY SHORTS!!" I asked which pair she meant. She keep repeating MY SHORTS. I said that the shorts were put away for winter. She then got more angry as she was talking about a certain pair of shorts.

I then remembered that when she was at the crisis home, she had earned some money and went shopping at Target and got some disgustingly short shorts. We have a length of shorts rule at our house, and the disgusting booty short shorts that are in do not fit the rule. I have worked hard to avoid them, and I know that someday it will be a battle I probably just give into, as it would not be worth being hit and punched over.

But that day is not here yet. I put those shorts a few weeks ago in the donation bucket. I had to tell her that as she was perseverating on the shorts. She was not pleased. Not pleased. At all. I took several punches to the gut and a few pushes before I got her moved on and refocused on getting dressed for school. I didn't even engage in the conversation with her we have had a million times about weather appropriate clothing. Shorts in January? Not a great idea, even with the mild winter we have had so far. I also didn't even bring up that those shorts would not meet the school dress code. I tried to avoid the "battle" conversations.

She is going to respite tonight until early Sunday afternoon, and I am relieved for a break. We are in desperate need of a new PCA and the next week is going to be a tough one as I only have a PCA one day. I sent an email to a friend of a friend this morning who is a nurse and willing to help us recruit. It is hard to recruit PCA's, especially if they know anything about our life. Would you want to work 1:1 with Akila after everything you have read? I had to explain to this person, that Akila will not be violent with the PCA's, she saves that pleasure for her parents and siblings. She will be sassy, and not listen, but she won't hit or hurt them.

So if you know anyone in the Twin Cities area available around 3:30 in the afternoon, let me know. We are desperate!

Twilight Zone

2012-01-08T22:20:00.003-06:00

Michael has been talking about remembering an episode of the Twilight Zone where a child ruled a small town. He found it on Netflix and we watched it. The parallels to our life are strewn all over in this 24 minute episode. It is episode 73 in case you're interested, it is on Netflix (Season 3).

It is obviously more extreme than our life. The whole world except a small town has been wiped out, disappeared. And in this small town, a little boy named Anthony runs the place. He can read minds, and when he doesn't get what he wants, there is a price to pay (somehow he makes people disappear and go into a corn field forever, I think like statues or something). Obviously, Akila doesn't have these kind of issues, but they way that people act around this boy is what hit home with us.

Everybody walked around on egg shells around this boy. He doesn't like loud noises, so they were super paranoid of making noise. Everybody has to be happy around him and think happy thoughts so he doesn't get mad. One lady said it was "terribly hot" day outside, and a different character was saying no, no it isn't. He was trying not to make the boy mad. In one scene, a man was given a gift of a record and he wanted to play it to listen to the music. But they boy doesn't like music with words, so he said he didn't want to. The town is running out of soap and other supplies, since they have no more electricity, automobiles and are the only people left in the world. Anthony didn't like electricity and cars so he made them not work.

At one point, the man who received the birthday gift started to drink alcohol and was getting a little drunk. He then got loose with his lips and was saying that there were only 2 more bottles of alcohol left in town because of the boy. The boy eventually turned this man into a jack-in-the-box and put him in the corn field.

The parallels, are not being able to say what you want, having to choose your words so carefully, and agreeing with things that you know are wrong. Akila is so volatile right now, that we are all walking on egg shells. I find the kids all the time correcting each other and trying to help each other phrase things so it won't make Akila mad. They can be on the opposite side of the house, and if she hears a tiny conflict they are having, she comes running through the house and starts giving them heck.

This town felt like they were being held hostage by this young boy. We often feel the same way. Akila had to take a shower today. Had to. I didn't tell her she had to. I started off this morning asking her what time she would like to take her shower. She said later. Wouldn't get specific. Got yucky each time I brought it up. After dinner, I had to tell her that she would not be able to play dolls with Imani until she showered. She went berserk.

Big time berserk. Kicking, hit me in the face, pinching, and other things. I remained calm for awhile, but eventually I had to restrain her as she was attacking too much. As I was restraining her, she got her teeth on my forearm right above the wrist and was biting down hard. To get her to unclamp from me, I gave her a thump on the side of the head. Not a hit, but a thump. I shouldn't even be admitting this on the blog, but I am. If child protection wants to come out, I'm ok with that. She was spewing all kinds of nutty things out of her mouth. She gets totally manic during these times. Accusing me of all kinds of things. At the crisis home, while being restrained one time, she was accusing a staff of raping her. She has done that with me before as well. Tonight she said I gave her a black eye. I was nowhere near her eye. The things that she says and makes up are wild.

She was saying I broke her arm also. Not at all true. Last week Michael had to restrain her when I was gone, and she was obsessed for days that he broke a finger of hers. Had to show everyone how it was swollen. Didn't look swollen to me, but I agreed with her. Didn't want to end up in the corn field. She hit, kicked and pinched him. But she was obsessed with how her finger hurt. She even went to the nurses office. Would love to hear what she told the nurse.

After church, Michael and I were both in the kitchen making brunch. Zeke was helping us. She came into the kitchen, and started yelling at Zeke for how he was stirring the hash browns. He was doing it perfectly. But she had to yell at him. Then she had to push him. I could not get her out of the kitchen. She just wanted to stand there and yell. I was looking all over the house for her teddy bear as the OT suggested using it as a symbol that she needs to go to her room and take a break. Akila liked the idea. I knew it wouldn't work. But I like to try these great ideas to show how smart I am. Ha. No, I will try stuff.

I found the bear, brought it to her. She got more elevated. Didn't help. While I was searching for the bear, she also hit Zeke. She has a thing for Zeke. He can't do anything right. She constantly yells at him. Poor thing, he is the sweetest thing too. Then she is totally obsessed with Imani and thinks Imani is her personal playmate 24/7. Imani is sick of it. Hezekiah just explodes at her and smarts her off all the time which elevates her. Then I have to control myself not to be annoyed with him.

It is hard, so hard. I was hit in the face twice today, kicked 7 times, pushed 5 times, pinched and scratched a ton during the restraint, and hit in the back, shoulder, arms and gut at least 15 times. How much do you put up with this? Meds are obviously not working. I am going to have to call our social worker this week. Not sure if much is going to happen though. It does feel like we are living in the Twilight Zone.

A night away...

2012-01-06T09:43:00.003-06:00

All of a sudden in the last week, we are back to what it was like the last week before Akila went to the crisis home. I once again have the icky feeling that I can never leave the house if Akila is home. Michael is a great dad, but Akila is super obsessed with me and if I am not home, she completely, and I mean COMPLETELY, loses it. It is a yucky feeling.

A good friend of mine from high school lost his mom this week and I am going to Willmar tonight to attend the funeral in the morning. It took me two days to figure out how to make it work. I was trying to find a PCA for Saturday morning, and other options like that. When a friend reminded me of one of my high school friends who's family has taken Akila for some overnights in the past to give us a break. I emailed her yesterday and within a few hours it was all set up. It is such a blessing to have friends who can help when needed.

And now I have the awkward feeling of looking forward to going to a funeral. Actually, I am just looking forward to seeing some good friends and people I haven't seen for awhile. My friend's mom had alzheimer's and in many ways, it is a blessing to their family. She was really struggling. You know how you have different groups, maybe your high school friends, church friends, work friends, neighborhood friends, blog friends or various groups like that? Today I am thankful for such a great variety of friend groups, and my blog friends are just as important as any of the groups. I truly have great friends. Thank you!

Amazon, shop away!

2012-01-05T12:43:00.003-06:00

I was inspired by my friend Dorothy to put an Amazon search box on my blog. We actually buy a lot of things through Amazon, so I figure that they can send a little love my way!

If you ever need to order anything off of Amazon, do it through my site. It does not need to be anything related to my site, or kids, or adoption, or FASD or all of the fun stuff I blog about. It can be for dog food, books, mixers, etc. I will get a small percentage of whatever you order. After 3 months of unemployment, it might help us to catch up!

If you are one of Dorothy's readers though, of course do it through her blog!!! I don't want to steal potential moola away from her family! Thanks friends, shop away!!!

OT

2012-01-05T11:02:00.003-06:00

Akila has been doing OT the past few weeks (Occupational Therapy). Some of the different professionals have wondered if some of her behaviors are sensory related. I don't really think so. Does she have sensory issues? You betcha. Are they what are causing her to rage? NO!!! Would more sensory outlet help her to rage less? I honestly don't think so.

She can come home from 2 hours of intense dance class, and rage the same as she did on an evening without any sustained sensory output opportunities. Is sensory stuff good for her? You betcha. But I know her well enough to know it is not going to stop the anger. Yet we are doing it to show that we are good parents and we are playing the game, checking it off the list. Do I sound bitter, or hostile? I hope not.

I am just trying to say that I know my daughter. It sometimes does get frustrating when someone new comes into the picture and has a suggestion they think is brilliant. It almost always is something we have tried. I know they are well intentioned. I get that. I just know that they don't get what it is that we are dealing with. It is pretty hard to imagine what it is like to live with a child who is hitting, kicking and punching you multiple times a day.

Her OT appt this morning was interesting, to say the least. She got mad right away, and started calling the OT a stupid woman and stupid. Showed her major attitude. It was kind of refreshing. That sounds nice, doesn't it? But it was nice for someone else to see how angry she can get over something so piddley. The OT almost kicked us out. Well, not kicking out, but said we might not be able to meet today as she explained to Akila that it didn't seem like she wanted to be here and it wouldn't work this way.

The only reason Akila calmed down, is she told the OT she wanted to do some food tasting again. The OT brought her to the kitchenette to get some samples of food and Akila was immediately cooperative. Why? Because she got her way. This is the number one "calming technique" that Akila prefers when she is escalating or at the top of the red zone. She will settle down immediately if you give her what she wants. It would have been interesting to see what would have happened if they had not gotten the food.

The interesting thing, is that when we were leaving, the OT said that she isn't thinking this is a sensory issue but a behavioral issue. Ya think????!!!!! Hopefully she will put that in her report and we won't have to do OT much longer.

Details...

2012-01-04T12:37:00.002-06:00

I had a nice day yesterday, even running errands and going to dr. appt's was good. I then had a meeting that went until 8:00 with Julie. The deal was, after the meeting I would call Michael to see how Akila was doing, and come home if she was out of control. I called, he answered like this, "It is bad, really bad." and I could hear Akila screaming uncontrollably i the background. I said I was on my way home. Julie and I were still together so we decided she would come to my house to help put Akila to bed and that Dorothy would come over and we would hang at my house (not nearly as cool as the Kitty Kat Klub).

Akila called me right back and was screaming and crying in the phone. I put it on speaker so Julie could hear. She accused Michael of bending her fingers backwards, pulling her hair and a whole bunch of other stuff I couldn't understand. By the end of the call, I had her calmed down a little bit, but not much. When we got to the house, she was calm and playing with Imani. When I had gotten off the phone with her, Imani had gone up and asked if Akila would play dolls with her. An obvious ploy by Imani to try to help Dad settle down a volatile situation.

I knew that having Julie at the house would calm Akila down, but she was already calm. She played with Imani for awhile, Julie and I put her to bed, and it all worked out. However, Michael said she was the worst she has ever seen. She was attacking everyone, and totally out of control. He had to restrain her finally. He was quite shaken. If she continues the way she has the last 4 days or so, living at home is not going to work. And today, because of that realization, I have a heavy heart. Again.

It doesn't help that one of our PCA's has cancelled. I love my PCA's, all of them. But I don't know if they understand what it does to our entire family when they can't make it. I totally know that sometimes they legitimately have to cancel. But I know that sometimes they could make it work. The cancellation, hit me hard while I had a heavy heart already. Especially because I have to bring Hezekiah to a dr. appt at 2:45, so I won't be home after school. I tried several options, and finally, one of her teachers is willing to have her stay after school an extra 1/2 hour with her til I can get her. How amazing is that? I do love our school, they have been very supportive of all our goofiness. My only other option would have been to pick Akila up at 2ish early from school and bring her with to the appt. I did not like that option. At all.

The boys have Awana's (a church program) tonight. I was sitting and dreading the idea of sitting her all night with the girls while Akila throws fits and rages as she will want Imani to play with her, the entire night. So I texted my brother who has something I need to pick up and asked if he was around tonight. He said yes and that my neice is leaving to fly back to college tomorrow and they were ordering pizza and we were welcome to come. Wahoooo!!! Thank you Jesus. After a couple hours of emailing, texting and calling to get the afternoon and evening figured out, it all came together.

Now I have to find something for Akila to do on Saturday morning. A friend of mine's mom died and I am going to the funeral in Willmar. I would take Akila with but she has rehearsal for the dance Winter Show at 1:30 and she can't miss it. I don't think the morning will go well to just leave her home with the family, and I haven't been able to find a PCA yet. Anyone looking for some excitement on Saturday morning from 9-1:30? ;)

Do-over

2012-01-03T08:24:00.003-06:00

I did not start the new year out right and today is my do-over. Today is New Year's Day for me. The sleepover backfired and made the last two days horrific and put me in a bad place emotionally. The kids left for school a few minutes ago, I am about to take a shower, and spend time in the Word. I am determined not to let the last few days define the new year.

I was driving Akila to dance last night, and I was emotionally spent. It was day 17 of a long break. The last 4 days were rough, especially the last 2 days. I had very little sleep, was having to take baths which I hate (shower/tub had new caulking so had to use the other bathroom with just a tub), and was on and off (mostly on) hit, kicked, poked and swore at. I feel like all I did for 17 days was tell Akila that it is Imani's choice if she wants to play with Akila. Imani played a lot with Akila, more than I could. But it is never enough and it is always on Akila's terms. When Akila is off on this rant, I offer to play dolls with her, or whatever she wants. She does not want me to. This use to work, now it doesn't.

I am looking forward to getting back into a routine. We are still trying to find a routine this year with PCA support after school. I have a PCA today to take her to dance. I will start at lunch time running Zeke to dr. appt's, going to a dr. appt with Kathy, and then to a meeting tonight. After the meeting, if things are not too crazy at home, I will be getting together with Julie and Dorothy- just what I need to start off the New Year. My friend (who goes to the same church but I have not met, yet!) at Days of Wonder and Grace wrote a post that I read last night after putting the kids to bed. It helped to center my tired and hurting brain and heart. Akila was chosen for me by One who knows all, by someone who knew I needed her in my life. I am grateful to be Akila's mom.

What was I thinking?

2012-01-02T01:10:00.003-06:00

I let Akila have our neighbor girl and her brother sleep over tonight. That is the last sleep over for 2012. Please remind me of that if I lose my sanity again, which I will do.

It went really well, for close to 6 hours. Isn't that amazing? Shouldn't I be so happy, and full of joy? The neighbor girl, M, and Imani played basically whatever Akila wanted for at least 5 hours. Then, at bedtime, they wanted to watch a movie. Akila did not. Have I mentioned that since she has returned home, she never wants to watch any TV, or movies. Or go to movies. She did watch some at the crisis home, but it was very monitored and scheduled.

But she flipped out when they wanted to watch a movie. She wanted me to force them to play dolls with her, some more. And she flipped out big time. I had to restrain her for the first time since she has returned home. I almost had to yesterday when she clocked me in the face hard, but instead I left to go to the grocery store to gather my composure. I should have left tonight, but I couldn't. She was way too out of it, and it was my own dumb fault we were in the mess so I couldn't leave poor Michael to deal with it.

I almost had to send the kids home at bedtime and cancel the sleepover, but I really didn't want to do that to the mom. Their mom is a single mom of 4 kids, and her oldest daughter who is 18 has FAS and is currently living in a crisis home awaiting a group home placement (has been waiting since May). The daughter is home for the night. I might have totally thrown their night off, so why should we both have horrid nights, right?

Not the best way to start 2012 out. What was I thinking? Tomorrow is day 17 of the longest winter break ever. I am ready to run for school board to make sure such things don't happen anymore. Except my school district doesn't have elected representatives, so I can't even do that. Sorry teacher friends, I love you all, but 17 days is too long. :)

Calendars, tokens & lists, oh my!

2011-12-27T18:29:00.002-06:00

The below picture of our two month calendar (which is on a wall that I started to peel wall paper on over 7 years ago- ugh!), is a tool I love. All of my kids look at it daily to see what's coming up, and Akila especially loves it to know what is going on. It is magnetic, and we will attach other things on the bottom of it.

The next picture shows some post it notes with "calming techniques" that Akila is suppose to use when she is getting upset. Nice in theory, but she has not once used the ideas when she is getting mad. When I suggest them, it infuriates her. But we still refer to them and keep them.

The next two sheets explain her token system. Not a big fan of it, but we are giving it a try for the umpteenth time. It has helped a little.

This is my favorite thing hanging on the board right now. Last week one day, the boys asked to use my laptop. I thought they were playing a game. Instead, they typed up this list titled "Things To Do If We Are Board". I did not tell them to do it, I did not suggest it, they weren't even complaining of being bored which makes it all the more precious. I am going to type the list below in case you can't read the picture.

Play the Wii
Play Bionicles/Legos
Play spies with stuffed animals
Play with Nerf guns
Wrestle
Play super heroes
Color super heroes
Look at the internet on mom's laptop
Memorize our bible verses
Play PSP and DSI
Watch movies on Netflix
Play a board game
Play outside
Fight with light sabers
Play table football
Do latch hooks
Watch TV channels
Build with big and small blocks
Help mom or dad
Sit in beds and read
Play hide and seek
Make paper airplanes and fly them
Play catch with a football

How precious is this? I was very impressed that they were doing this without prompting, and I was even more impressed with the list they put together. I am truly blessed!

Zeke, the chef!

2011-12-26T15:11:00.004-06:00

Zeke's 3rd class has a partnership with a food co-op and have been studying food and sustainability and healthy eating. Several weeks ago, he came home from school and started cooking. He made a really healthy meal full of vegetables and we all loved it. I had posted a picture on Facebook, but I don't think I blogged about it. He has cooked at least 3 times since and uses leftovers and other odds and ends to make his meal, which always includes rice cuz he loves rice.

On Christmas Eve, we have appetizers and I was in the kitchen all day getting them ready and some food for Christmas Day. Zeke wanted to make his specialty also and I welcomed the help. The little cutie then set forth in getting it all organized at noon. He got out the cutting board, the herbs he would use, the knife, the can of beans, etc. He made a list of what he would need (which he added to several times throughout the day.

He made his meal which we all genuinely loved. Akila especially likes it and the great thing is there was a good amount of leftovers and it will feed us for a few days.

Merry Christmas!!

2011-12-26T14:57:00.002-06:00

We had a very lovely and uneventful Christmas. Praise the Lord!!! Akila did a fantastic job and was actually better than normal. She did wake up at 2:15 and 3:15 on Christmas morning, but I was able to get her back to sleep and I was very thankful for that, since I had just gone to bed at 1:00.

We spent Christmas Eve at hour house with just our family and went to Michael's brothers on Christmas Day. The kids received gift cards to Target from both of my brothers and today I brought Akila to spend them. I hate doing this. She does not understand money concepts well and it usually takes at least an hour. We move from the clothing section, to the toy section, to the electronic section to the make up section to the baby section and then start the rounds over and hit them all at least twice, if not three times. But today, we started in the baby section, she chose a preemie out fit for a new doll, we then moved on to the toy section where she picked out a barbie, and two Liv doll products. It took awhile, but not forever, and she did not throw a single fit. Thank you Jesus!!!!

She has been playing with them since we got home, 3 hours ago. Imani has been helping her and playing with her. That is all I need for Christmas, several hours of play without her throwing fits. Yahoo.

Here is our Christmas card picture. The exposure lighting didn't turn out very good on the ones I sent out, but it works. Merry Christmas to everyone.

Knitting

2011-12-23T23:42:00.004-06:00

I have mentioned that since Thanksgiving or so, Akila has been trying to knit. One of her PCA's knits and did it with her at the end of the summer. On Thanksgiving, she worked on it forever with my sister-in-law's help. I don't know how to knit, and I really am not interested. It is not my thing. But I may need to learn.

I did get her some knitting needles-I know, I'm living on the edge. They could become quite the weapons. I have warned her that she will not see them again if she even threatens to use them as a weapon. She has went to Grandma Kathy's next door for help on it- Kathy has helped her twice. Her in-home therapist last week helped her and for nearly two hours, Akila knit. The therapist was blown away by her attention span. It is truly amazing.

One day this week, Imani even agreed to knit with Akila. Imani took a knitting after school class a year or so ago, and has some great beginner knitting skills. She has helped Akila on and off the past few weeks. But the two of them sat in the living room and knit for quite awhile. Here are some pictures:

I think with some of her fine motor challenges, it is not something that she is picking up on very quickly. After many hours and lessons with various people, she still needs constant supervision with it. It is similar to when she took piano lessons years ago. She really struggled with putting her fingers on the right keys. I would help her to place them on the right keys, and they would immediately go back to their regular position.

You might also notice that Akila is wearing a coat. We do have a drafty old house, but she is constantly cold and asking me, I mean yelling at me, to turn up the heat. I tell her to wear a sweatshirt or sweater, but she never wants to. She prefers her winter coat. I have never been able to get her to wear a weighted vest, or use a weighted blanket, but I think the coat serves in the same capacity.

Barbie play, and I'm not talking about myself(never call me Barbie!)

2011-12-23T09:18:00.005-06:00

This is Akila playing with her Barbie's in the living room. It is a mess, and we are not allowed to touch it or move anything. And yet we get in big trouble if someone accidentally steps on a piece and breaks it.

What is amazing is the length of time she can play with these, and I mean by herself. She played with them the majority of the day yesterday. She woke up and has been playing with them for 30 minutes already, and hasn't even taken her morning meds. At some point today, Imani will be gracious and play with her for awhile. It is never long enough in Akila's mind, but I am always very thankful and proud of Imani for doing it, as she does not like dolls very much.

I am thankful that Akila has the ability to entertain herself for periods of time. It would be really smooth if she were not bothered by the rest of us breathing, let alone walking through the room to go to a different room, or jumping on the floor above her. I think I may have mentioned before that we have big problems over her trying to find a certain barbie accessory, like a shoe. If she can't find it immediately, the entire family is accused of stealing it in an attempt to "terrorize" her. Everything has to be halted and we need to search for the missing item. When I am not willing to stop everything and help her find an item, look out. We are sure to end up in a physical altercation. She is usually happy with just an attempt, if unsuccessful in the search, she will be mad and have some more choice words, but she usually won't get physical.

She of course remembers every detail of how a certain barbie came in the package, and wants to find the original shoe or earring they were wearing when they were new. She will end up spending forever trying to get all the pieces she wants to play with, and then when it is bedtime or time to go, she freaks out because she hasn't gotten to play yet. This really confused me for awhile, as she had been playing with them for hours, literally (while she takes frequent breaks to yell and scream at us for living). I then realized that she was upset as she had spent the majority of the time gathering the items she wanted, and didn't end up playing with them as much as she wanted.

But, this Christmas season, I am truly thankful that Akila is home. I am thankful that she has not gotten as violent as she was before she went to the crisis home in early September. I am thankful that she is playing well even though there are plenty of hiccups, her ability to play is a true blessing for which I am thankful.

Harassment

2011-12-22T22:33:00.002-06:00

Akila's class must recently have had a discussion on harassment. She now thinks she is the queen of calling out when she thinks someone is harassing. Yet she is totally oblivious to the fact that she is in fact the queen of harassment in our house. She is constantly harassing all of us, but especially the other 3 kids.

Today was day 6 of a 17 day winter break. Yes, 17 days. I know that must be making all of you sick to the stomach, like it does to me-unless you're a teacher. We had a PCA at the beginning of the week, but today was day 1 of 5 days with no PCA. Lord help me.

This is how the day goes: Akila brings all of her barbie doll stuff down into the living room to play. She wants to be as close to me as possible and I am usually in the kitchen area. She will not play them in her room- drives me nuts. The kids usually play in our pool room (a big family room with an indoor pool, which has been drained and is now our toy pit, with area rugs in it). Imani has been gone at a friends for two days, a kind of respite for her. The boys sometimes go up to their bedroom to play. When they are upstairs, they can get loud. They are boys. They horse around, wrestle, have fun. Akila can't stand it. She goes nuts every time they go upstairs and make any kind of noise. If Hezekiah jumps out of his bunkbed she loses it. She is constantly harping on me to go harp on them. Even when I explain to her that they are fine, there is no need for me to yell at them.

But this doesn't satisfy her. She gets extremely worked up, and decides to take the matter into her own hands- which means I have to intervene or she will go up and start a fight with them. This happened today at least 15 times, I think way more than that actually. They were playing quietly in the pool room at one point, and she went down there and was yelling at them for the way they were playing a game. Then she starts to accuse them of harassing her. This, after about 10 minutes of harassing them.

On Sunday, Akila was in the pool room with the kids when she started to accuse them of harassing her. They were telling her that she was the one who was harassing when she calls mom a stupid white woman. I have said the same thing to her, several times and tried to have a discussion about harassment. She never listens. But she did kind of listen to them and agreed with them. It was kind of cool. But I am still being called names, and so are they.

The part of the lesson from school that seemed to stick in her brain is that if you do or say something over and over again, it is harassment. So, when she starts to call me on harassment when I am giving her a direction, and repeating the instructions, I then point out to her that she just threatened to kill me three times in a row. Clear cut case of harassment. Not in her court of law. I lose every time.

Gory details, sorry in advance

2011-12-19T15:33:00.003-06:00

I have not been feeling well for over a week, hence my silence. I feel better, just in time for a two plus week break- yey!!! NOT! My kids have the next two weeks off plus the Monday after New Years. According to my calculations, that is 17 days- way too long!!!

I debated over filling you in on the gory details, and since I don't have good filters, I am going to share a little. I have learned I am prone to cysts. I had one last June that got infected, the weekend of our spring recital, by my eyebrow. My entire eye was swollen shut one day, and it was a mess for over a week until I got on antibiotics. I have always had a tiny one on my lower rib cage, for at least 7 years. Well, it decided a few weeks ago to get infected. It also decided to be very painful and grow to the size of a golfball. And to come with other complications like a fever, body aches and cough. It was not fun. It was not pretty. I finally had to go to urgent care to have it lanced. Round of antibiotics. Totally disgusting.

Today, I had my annual dermatology appt since I obviously have skin issues (I have several moles that are suspiscious also, so I do get an annual check up). The cyst has been draining and gross for two weeks. The dermo said it is still not good. She drained a bunch more. More gory details. It hurts really bad. Imagine the underground zits that are uncomfortable, times 1,000. Maybe 100,000, or more. And imagine coughing with a golf ball size infected disgusting thing on your rib cage. Nuff said. I have been miserable.

I guess it is not nuff said. I was hoping the dermo would cut it out today. They just keep re-occuring til they are completely cut out, like a baloon that keeps refilling. Gross, I know. Well, she said it is so big I need to have a surgeon remove it. Not happy about that. I have already had 10 surgeries in my life (not to mention how much it is going to cost!). None of them are big deals either. Six knee surgeries, appendicitus, tonselectomy, thyroid nodule removed- stupid stuff like that. Now add removal of disgusting fowl smelling sack of pus to the list. I am one hot chick I tell you. Now, nuff said.

Akila has been home for over two weeks. We have had our rough patches, that is for sure. There were a few days in a row, where she was quite violent, not til after one good week. I was very nervous, still am. But she has had 5 good days in a row. Doesn't mean I haven't been hit. I was hit and poked several times tonight. But with different intensity. And the previous 4 good days, I was not hit at all. I am so grateful for that.

I think the Lord knew from prayers that we needed some good days. It was very scary to see her heading to the extreme violence again. She did not get there, but she was headed there. I am not saying that we are out of the woods. I fully know she will get nutty again, and probably soon. But I am so thankful when the Lord knows we need the break.

Last week, Imani was praying at the dinner table when Akila was gone at dance. She prayed, "Jesus, thank you for this break tonight from Akila- even though we just had 3 months of a break". That said a lot. We talked a lot with the kids about what it would be like when Akila returned. I don't think they fully understood. Even though they know all too well what it is to live with Akila, they were so longing for her to return home, that they didn't really remember what it would be like. Now they do.

We have had to remind them all multiple times a day, to not "respond". When Akila is going off on them for riducous things, they need to not respond. When she is going off on Zeke for the way he is making Ramen noodles, he needs to not respond. When she is calling me a "stupid white person", I need to not respond. When she is going off on Imani for watching too much TV, she needs to not respond. When she is going off on Hezekiah for eating food she thought was hers, he needs to not respond.

She is trying to get a reaction. She will sit and argue back and forth a million times. She has to have the last word. She is always right. No matter how stupid what she is saying is. I just agree. I'm sure it looks ridiculous to most outside people. But it is not worth the fight. Yes Akila, "there is school tomorrow". Even when there isn't. I don't say that right away, I try to help her see the truth. I show her the school calendar hanging up in the kitchen. I bring her to the computer and show her the facts. If she is still arguing, I just agree. At this point, before this point, she is escalating big time. I agree all the time to try and avoid the escalation. It only works maybe 1/2 the time. But that is more than all the other methods (like trying to get her to count to 10, take a break in her room, do jumping jacks, squeeze clay, etc.).

She has started to see an OT. The best line of the week last week was when the OT was asking her about some of the foods she likes. She asked Akila if she likes licorice. Akila said, "No, but my dad let me try liquor once and I liked it". I thought I was going to explode from trying not to laugh or react. We have no liquor in our house. Her dad has had one beer in his entire life. You may be thinking she was confused as the two words sound the same. She knew what she was saying. She went on and on fabricating a story about how her dad gave her liquor and she liked it. She was laughing in a sort of evil way also. She refered to it as alcohol at one point. She knew. She knew.

White elephant, explain that to a FASD kiddo

2011-12-12T22:17:00.002-06:00

On Friday evening, Akila is going to a retrogressive dinner with the church youth group. They are suppose to wear ugly Christmas sweaters and bring a white elephant gift. I didn't realize they were doing the white elephant gift thing until tonight. I might not have signed her up and told her about it if I knew they were doing that.

She will not understand this "game". Especially if she ends up with a gift, and someone "steals" it from her. Hahaha. I am actually laughing hysterically at the thought. The irony of "stealing" a gift from someone else, considering her issues with stealing. People all have different ideas of how to do a white elephant gift thing. Lots of people do it where you find something you already have and wrap it up, the goofier and more humorous, the better. Some people don't get that, and buy nice new things. Value is suppose to be $5 max, but I have seen people give nicer things than that.

Akila will not get that. If she gets stuck with somebodies used coffee mug, or something corny like that, she is going to be mad. And sees another kid get new lip gloss, or some other cute thing. I'm going to send an email to the youth group leader in charge of the event, to just give him a heads up. If you're not familiar with the gift exchange, here is how it usually goes: some kind of order is decided on in who chooses a wrapped gift first. The first person chooses a gift and opens it. The second person can "steal" the gift from the first person, or choose a different gift to open, and it goes like that. The last person to choose, can "steal" any gift they want or take the last wrapped gift.

And if Akila gets a gift that she really likes, and someone steals it, I pity that person. Akila will be mad, she will not hit them or anything- but she will remember it for the rest of her life and will loathe that person. She will put up a stink though, and carry an attitude the rest of the evening. I am quite relieved that I will not be there- if I were there, she would put up more of a fuss if it does not go her way.

Hopefully, I am worrying about nothing.

All things fun, I mean dumb, I mean fun, I mean...

2011-12-09T08:09:00.003-06:00

I made it to the Hollidazzle Parade event at school last night. So fun. Not. Events like this are planned for to bring the kids and their families together for a social gathering, to build a sense of community and spirit. It just doesn't work for families like ours. If they didn't pump it up so much and get the kids so excited for it, we wouldn't go. We do skip a ton of the activities, and sometimes I feel like we owe it to the other kids to make an effort.

They had raffle tickets for sale. No room in our budget to buy any tickets. Kids could fill out one free ticket if they answered some questions right on a holiday quiz sheet. There were probably 15 questions, I only knew the answer to one. Akila was furious. Obsessed. It was not fun. An activity that was meant to be fun, and was for 99.9% of the kids there, was a nightmare. I finally started sending out mass texts to friends asking questions like "what was the name of the rabbit in Frosty the Snowman". My brain was totally dead, and I haven't seen any holiday shows this year. Thankfully, several friends answered and we got Hocus Pocus right. Thanks friends!

So eventually she got the three answers and turned it in and got to put her name on a raffle ticket. They had a couple of little baskets with junk in them, and an Ipod. The free tickets were not valid for the Ipod drawing, just the baskets. Then, Akila wanted to show the kids her honor roll certificate. I told her that mom and dad brought it home. She disagreed. Adamantly. More than once. Then talked a staff into bringing her up to her locker to get it. I went to the bathroom. The raffle ticket drawing happened during this time.

Akila won a basket. I should have known, she always wins stuff. The basket had a chocolate bar in it, a pack of hot chocolate, and a few coffee packets. A mom and her two kids were sitting a the table with us, very nice family. The son is in Zeke's class, and the daughter is in Imani's grade. That daughter happened to win the Ipod. When Akila came back and the kids told her she won the basket, she was mad as she wanted to win the Ipod. Of course.

I had told that mom I wasn't even entering the drawing for the Ipod as it would only cause major problems as to who would get it (plus I didn't have money in the budget). When Akila saw that this girl at our table won it, she became obsessed. She asked the girl if she would trade the Ipod for her basket. The girl laughed, it was funny after all. Not to Akila. She was serious. She doesn't see the difference in value, although she desperately wants the Ipod.

So, the rest of the event, was not fun. I was thinking the entire time, why did we come? Why do I do this to myself? The little boy in this family wanted to stay with Zeke at the parade and the mom said we would walk together. This ticked Akila off as she now hated the Ipod girl with a passion. We started to walk to the parade, and Akila was furious and jealous that Imani was walking with the Ipod girl. At the parade, all Akila could do was yell at the kids for anything she perceived they were doing that was wrong.

I just hate how all things fun like this event, almost always turn into a disaster. The good thing though, is that the other 3 kids had fun despite her issues. They are pretty good at ignoring and looking past her behaviors. Driving home, she was talking about what a horrible day it was. This made me chuckle, inside of course. She had the honor roll ceremony in the morning, and in her after school class, she had completed making a boombox out of a lunchbox. It is super cool, it has a speaker in it, and an MP3 player attached to it. The kids got to solder it together and do the wiring. She got to go to the parade. But she didn't win the Ipod and that is what ruined her day. It kind of ruined mine too. But I'll get over it. I am still so thankful that she is home, and not violent. Thank you Jesus!

Honor roll ceremony

2011-12-08T14:36:00.005-06:00

A few of her teachers are speaking about her on the top, and the next picture is the Principal and Associate Principal handing out the goods.

This morning was Akila's honor roll ceremony, it was very fun. Her school has uniforms and the students who make the honor roll receive a shirt that says "I am the definition of ambition" and some other school stuff on them. They can use these as uniform shirts. All 3 of my other kids have one and have been on the honor roll. This was Akila's first time, and she was pumped. I am so proud of her!!!

I have been fighting a strange mini cold this week. Started on Monday afternoon with a slight cough, not in my chest, but throat. Bit of a hoarse voice started also, and woke up Tuesday morning with body aches. No fever, no runny nose. Just slight cough and body aches. Body aches are the one thing that make me crazy, I can function pretty well with all the other stuff.

We increased Akila's Abilify on Tuesday and she has been more calm and manageable the last two days. Today she has an after school class and after that, we are going to the school for a meal and the whole group then walks over to the Hollidazzle Parade. Her school is in downtown Minneapolis, just one block from the parade. Of course, it is going to be freezing today, and I still don't feel great. But it beats cooking!

Mommy is out of practice

2011-12-06T08:17:00.005-06:00

I was in meetings all day at Children's Hospital and Clinics yesterday- well until early afternoon when I then helped give Julie a ride (she was in meetings with me), and then we went to a late lunch. I got home 5 minutes before Akila got off the bus.

When she got home, she was wound tightly! Hyper, bouncing off the walls, just a nut. Not raging, getting mad a little at piddly things, but was just plain goofy. I wondered, did I give her her morning meds? Yes, I remembered doing it. About a 1/2 hour later, I was checking my emails for the first time all day and had one from her special ed teacher. Said they had a really rough day and they kept her from her classes all afternoon.

I then remembered something. I had her take her oral meds, but forgot to put the Daytrana patch on her hip. This is the ADHD med. OOPS. Major oops on my part. The school paid the price, and so did our entire family all night. She was just loony, it was one of those reminders that the meds really do help.

I am out of practice. My 3 month respite was very nice, and I have been trying to prepare myself for the return to what is our "normal". Which means rough mornings, rough evenings, rough weekends. Basically, roughness all the time. And the skating on thin ice and walking on egg shells.

This afternoon, she has an appt for an OT evaluation at Children's. It will be interesting to see what they have to say compared to what the OT at the crisis home said. I wasn't impressed with her evaluation, but this was due to several factors. The main reason is that she did not interview me and made many assumptions that were wrong and ridiculous. I do think that Akila could benefit from some more sensory stuff so I am hopeful that they will have some good suggestions for us.

Skating on thin ice

2011-12-04T14:47:00.003-06:00

Treading on water; Walking on thin ice; That is what we are doing at our house. Should think of some song lyrics.

Akila came home on Friday afternoon. It truly is nice to have her home, but she definitely has her edge back. At the appt with the Psychiatrist on Thursday, the crisis home manager said they have been seeing her escalate in her behaviors in the past week and might need an increase in her newest med. We all decided that it would not make sense to do that right away in the midst of transitioning her back home. I can see that she is going to need the increase. I was hoping we could wait longer.

The normal dosage for this med is 20-30 mg and she is on 5 mg, so we have a good amount of wiggle room. Right now, the slightest thing is setting her off and making her quite angry. It was not like this just over a week ago, and it is not just being home. The staff were seeing the same thing all week.

After 3 months of respite, we have locked up the knives. I have locked up my medicine. The little storage room in the basement is locked. What we all need to get back into though, is walking on thin ice around her. Being careful in everything we do and say, and in particular, in how we respond to her, or if we should respond to her. This is one of the hardest things for the kids, especially Hezekiah.

Akila will argue about anything, and she is always right. It is futile to argue with her on some things. When we got home from a school event yesterday, there was a small SUV in front of our neighbors house. She thought it was her son. I said no, it was a different SUV. She disagreed. When she disagrees, she does not do so quietly, or quickly. She is rude, loud and goes on and on about it. I quickly agreed with her (who cares who's vehicle it was!). Even after I agreed, she still carried on and on about it.

She has had multiple situations like this with the kids, and they of course don't back down usually. Especially Hezekiah. He will sit and engage and engage with her, until we have an all out war on our hands. This happens most often when we are driving, makes for a pleasant drive. This is not something new by any means. This is something that the kids have never had a real good handle on, but they are usually better about it. They are out of practice. Not one of the things I remembered to prepare them for.

They had issues at the crisis home with hygiene, like we have always had. They had started to have her shower right after school before she could do choice activities. The last week or so, they had loosened on this and let her choose when in the schedule to do it, as long as she did it. They said this was because she had been doing well lately and had earned more say in her schedule.

Yesterday, I was going to straighten her hair, so I was going to have her shower in the afternoon or early evening. We ended up not doing it and decided to do her hair today. But I needed her to shower still, as I don't want to get out of that habit. She gets two tokens for doing it, same as at the crisis home. We are going to try the token system and see if it will work, it did for them. I finally got her to shower right at bedtime. But bedtime was not easy, either nights. She is in refusal mode on going to bed, even just going to her room. And she is really tired, her evening meds have definitely kicked in.

She has had some nice time playing with the kids, but again, it has to be on her terms. And the boys just don't want to play with dolls. She has been more intentional in helping out a little, and doing some small chores. She is more intentional on showing manners and there have been several times when she has gotten mad about something and 5 minutes later told me that it is OK (usually when she is mad, I get a tongue lashing- for losing her Barbie Doll earring, or something like that she is convinced is my fault).

The hardest thing, is that I know we need to wake her up in the morning on the weekends. They woke her between 7-8 each day. It is very hard to make myself wake her up when she is sleeping in. She slept til 9:30 yesterday when I finally woke her, and I woke her up at 9:00 today. I need to be more disciplined and just wake her up earlier.

I am very grateful to have her home. But we sure can use prayers so she is able to stay home with us.

Coming home

2011-12-01T14:45:00.002-06:00

Akila is coming home tomorrow and I am truly excited and ready. She has been doing so well since she started Abilify. We have a chart and graph that the crisis home manager puts together. It logs her behaviors since she moved in there.

Before the Abilify, she was having about 15 issues of non-compliance a week, 18-30 physical acts of aggression towards others, 30-42 episodes of verbal aggression and 10-14 temper tantrums a week. Since she started Abilify, she has had 0-5 non-compliance issues a week, 1 physical act of aggression towards others, 1-4 episodes of verbal aggression and 3 temper tantrums. That is a huge difference- you should see the graph, there is a serious dip!

She is approved to be there until Dec. 9th, but I emailed yesterday and said lets do it on Friday. They agreed. Today was our regularly scheduled two week team meeting. Each time we have one of these meetings, Akila is convinced she will be coming home that day. She has been let down each time. Last night, she was convinced she was coming home today. I kept putting her off, and she was getting upset. So I told her she would get to come home on Friday.

You would think this would excite her to no end. Not the FASD brain. She went nuts. Said I was terrorizing her, disappointing her, etc. This was at about 3:30, and she could not be convinced that one more day was doable. Finally, I said let's talk at bedtime and see how her night went. It did not go really great from what she reported to me. She didn't bring it up again when we talked later.

This morning, I picked her up for a dr. appt. In the car, she started going on about coming home today. I said tomorrow, and she got upset. I finally got her to settle down when I told her I needed time to get a meal prepared that she could choose, and that we wanted to get a surprise ready. Zeke wants to make a cake for her. This settled her down.

I am going to the crisis home while she is at school tomorrow and packing her stuff and taking it home. I will then pick her up after school. Tomorrow morning, will be her last time at the crisis home. I am truly excited to have her home, although I know it will be very hard, I also know it is time. I am praying that she can continue with her more calm behaviors, and that she will not escalate to the point of violence at the same level as before. I am so excited to feel complete again.

Legal Aspects of FASD training- register now!

2011-12-01T08:56:00.003-06:00

I wanted to remind everyone that you can still sign up for the training on January 18th from 8-4:30 on the Legal Aspects of FASD. Several of us blog buddies are signed up and would love to see or meet some more of you there. I'm thinking we need to go out to dinner afterwards!! If you do register, remember to mention my name on the registration(cuz I'm a serious big shot- NOT!!) and get a 50% discount. If you need me to send you the registration form, email me (my email is on the right side bar).

Honor roll

2011-11-30T09:42:00.002-06:00

Akila has made the honor roll for the first time ever. Wahoooooo!!!!! I can't even tell you how excited I am for her. She was very proud of herself, and that is so important. The other 3 kids have made the honor roll (our elementary even does honor roll) and Akila never has, and this has bothered her. We have told her numerous times that she has made the honor roll from our perspective, as her grades have always been amazingly good. But this time, she will get to go to the honor roll celebration. We will be there with flags, posters, balloons. OK, we won't go overboard, but it is possible she will never make it again.

This accomplishment, is one that would not happen without accommodations. Some would say it isn't fair. I have been emailing with a parent who's local school district has been trying to get all the students on an IEP to switch from letter grades, to pass/fail and put it in their IEP's. They have said it isn't fair to a student who works hard and gets a B, compared to a student on an IEP who got a B with accommodations. I say poo-poo on them.

Just because the student on an IEP had accommodations, doesn't mean that they didn't work hard. It doesn't mean that they deserve the B. It means that their brain functions differently and their journey to the B is different. It doesn't mean it is equal to the non-IEP student, but it does mean that it is fair.

I acknowledge that if Akila had to do homework, her grades would be different. The grades on her homework would have brought her grades down, no doubt about it. She got 2 A's, 1 A+'s, 3 B's and 1 C. I also know that if she didn't have an awesome 1:1 aide working with her and helping her, her grades would have been lower. But isn't this why we give these students accommodations? So they are able to do the work, understand better, and have some success? Doesn't Akila deserve the sweet taste of success, just once in awhile?

I don't know what that school district is thinking, that kids on IEP's are going to make the curve harder, bring other students rankings down. Seriously? How many kids on an IEP are really going to be doing that with their grades? To be trying to force across the board all IEP students to go to a certain grading system, no matter what it is, seems to be contrary to the whole idea of special education and IEP's. The idea of an IEP is that it is an "individual" plan.

Will Akila make the honor roll every time? It is very unlikely, although I would welcome it! I am sure that some people in the school or out in the world, might think there is a connection to her grades and the fact that she is currently not living at home. I would agree if she were doing homework, but she isn't. Homework is not the reason for her good grades, well, it is I guess since her exemption from homework is one reason why the grades are high.

One factor for the good grades, is that she has different teachers every hour. She does not sitting in the same room for the majority of the day, annoying the same teacher. It is like she gets a fresh start every hour. Some kids have a very hard time with these transitions, especially FASD kids. I do think this is kind of hard for her, but in some ways, it is more to her advantage. When she gets to know just one teacher really well, that is when she starts to push back more and show some behaviors.

I also think that the team of teachers she has have been very patient and understanding of Akila, and for this, I am very grateful. But truly, she has a fabulous 1:1 aide, and a really good special ed teacher this year, last years special ed teacher was not very good. These two ladies have worked their tails off with Akila, been patient, understanding, encouraging and have certainly made a big difference.

And then there is the meds. The meds have helped for sure, although she has had some rough behavior at school. Somehow, she has been successful at mainly showing her rough behavior to her aide and special ed teacher. They are amazed at how clever she is like that, and how the core teachers have not seen much of it at all. I am not surprised of course, as that is how she is with us. She shares all of her junky behavior with us, and the majority of the world, does not get to see it. I have a friend who has two kids with FASD, and she has one who shows all of his behaviors to the school and world, and one who is like Akila and doesn't. She says that even though it is hard to deal with her son raging at school, in many ways it is easier as the school understands him better than her other child.

I have mentioned before, that Akila's aide this year has been frustrated that the core teachers don't see what she sees, and that she looks crazy to them when she shares what Akila is doing. Been there, done that. She is in our spot now, and it sucks, feels yucky, and feels isolating. I get it. That is all I can tell her. And, of course the evil side of me, is relieved that someone else is experiencing the same situation.

Today, I am celebrating Akila's accomplishment. I am very proud of her, and I don't care what others think about it. We will go to the ceremony next Thursday, and have a few minutes of feeling like typical parents.

FASD research opportunity (in Minnesota)

2011-11-29T14:24:00.003-06:00

Akila went to the VA Hospital last week to participate in a research project for FASD. They are doing MEG (Magnetoencephalography) measurements of FASD children and they are looking for more participants. In particular, they need more children diagnosed with FAS, but will still take ARND diagnosis's also. It takes about one hour and the pay is $20-30.

The VA is doing this in partnership with the University of Minnesota. The MEG measures brain activity. If you are interested, call Nancy at 612-467-1458.

Road trip

2011-11-28T11:15:00.004-06:00

Dorothy, Julie and I drove 90 miles out of the Twin Cities last night to surprise our friend Kari and bring her an advent basket. It was a blast. Kari is a blog friend, and real life friend who has been very important in my life. She was the trainer at the first FASD training I was able to get Michael to attend, and she really explained it all in a way that clicked with him. That was the only time he has seen her, and he still speaks highly of her and the impact her training had on him.

Kari's blog was also the first one I read and it inspired me in the fall of 2007 to start blogging. Many of us love Kari dearly, and it was lots of fun to surprise her last night. I texted her that I was going to be driving through her town and was wanted to connect to drop off some GFCF oats that Dorothy had found for her. When she showed up at the coffee shop, there were 3 of us and we really surprised her.

The even better thing, is that we have now learned that the timing was good, it was God's timing. Kari needed a lift yesterday, and He used us to give it to her. That is so encouraging. We love you Kari!

It was also a great way to make a 90 minute drive fly by, us nutty gals just blabbed the whole time and time flew!! We even stopped for dinner when we got back, and I was still home by 10:30. Normally, I don't get home from our meetings til 1 or 2 in the morning. It was a great quick little trip, and one we should do more often!!!

Value of being weird

2011-11-26T20:13:00.010-06:00

While Akila has been at the crisis home, we have been trying hard to do things that are hard to do when she is home. We have missed Akila dearly, but have also really valued this time that we have had to be "normal", to vegetate, to relax, to stay up late and sleep in. But, I have to admit, I am truly and honestly looking forward to Akila coming home. I did not think I would feel like that. I think I only feel like that because the med she is currently on is helping so much. I have hope. Hope is a good thing (it can be a dangerous thing if it isn't mixed with a good dose of reality though-but we have lot so that), it has been a long time.

But back to "normalcy". I always tell my kids that they are weird, and I wouldn't have it any other way. I don't like normal. That must be why God chose me to be Akila's mom. We are not a normal family, even without the issues Akila brings to our family.

Our kids don't have cell phones. Imani was at a play date yesterday with 5 other 11 year olds. She was the only one without a cell phone. I am proud of this. She does not need a cell phone at 11. I don't mean that as a judgement against parents who have given their 11 year old's cell phones. It is just something we don't believe is necessary in our family situation. Would it be nice? Yes, there are times it would have been very "convenient", and times it would have made it much easier to communicate with Imani, or even Akila.

The thought of giving Akila a cell phone is not an easy thought. She loses everything, so does Imani for that matter. The one thing with Akila though, is that she doesn't have any true friends that she would be texting, so it might not be too bad, initially. All Imani wants to do, is text. The bummer with poor Imani, is that if we were to get her a cell phone, it would send Akila to the moon. But I hate to give her a cell phone just to feel "in"- that would be too normal!!!! I want her to feel cool about not having a cell phone. I have work to do in this area. One of her friends has even offered to give her a cell phone that they could easily fit in their family cell phone plan. A very generous offer, but again, I am not ready.

We don't have a cell phone plan. My cell phone is through the dance studio where I work. Michael rarely uses his so we have a pay as you go plan for him. So, to do a cell phone family plan would be a huge addition to our monthly budget, especially since Michael's new job and salary, will be lower than what we have been living on. I'm looking at this as a great new challenge that God has placed before us.

Anyway, my point is, we are not normal. We don't sign up for many activities, our kids are not over scheduled. As a matter of fact, when I leave one night week sometimes for an activity (speaking event, meeting, etc.), most of my kids whine that I am leaving too much. They have no idea what "normal" families are like. If you are a "normal" family, God bless you. I am truly not judging you, please know this. I just love being weird. I have always wanted to teach my kids the value of being weird. I want them to know it is OK to have dread locks. It is OK to wear socks that don't match (I do not match socks after laundered). It is OK to wear the hat with the jingle bell attached to it. When I was in junior high, I had a green sweatshirt that had s0 metal rivets in through one of the sleeves, and each rivet had a different colored ribbon tied through it. It was hideous. I loved it. My science teacher (whom was a total GEEK- not "normal"), would sing some song called "Buttons and Bows" that made me sick. Not because it wasn't "normal", but because he was a horrible singer.

I have mentioned in the past that my mom was a member of the Willmar 8. She was a quiet rebel, not normal at all for a small town mom in the 70's. I just think that "normal" is what the Lord planned for me. I am by no means saying He thinks I am going to be a superstar. Or that I will be famous. What I mean, is that I am not going to go by what the world says I should be doing. That I should vote for this candidate, or that candidate because I have a special needs child. Or because my kids receive assistance and go tot he public schools. Or because I believe strongly, to the core of my heart, in service and giving back. I will not do what the party line tells me to do. I am not normal, I am weird.

I do not make sense. Many people assume I am conservative because of my religious views. Many people assume I am liberal because of my experience/views on education and special needs kids. Again, I am weird. You cannot be guaranteed of either viewpoint with me. I am not normal. And I am so thankful to God for that stance. I am weird!!!! Wahooooo!!!

So, here is a picture of Zeke's birthday party, he had 3 buddies over. The boys got to have an overnight party this year, as it was possible with Akila being gone.

Here is Hezekiah's birthday party and the 3 buddies he had sleep over

The picture on the right, is of an Air Swimmers flying shark. The boys each got one for their birthday, Zeke got a clown fish one (don't have a pic of that one). They are honestly one of the coolest toys I have ever seen. They are basically a helium balloon that has a remote control and "swims" (flies) in the air. It is so cool, can't even explain it. Highly recommended for a Christmas gift.

Above is a picture of Imani cooking. Can you believe how grown she is? It is freaking me out. Puberty stinks on so many levels. I am not ready. But she is amazing, and we are blessed.

Home visits

2011-11-24T21:07:00.002-06:00

Akila had an appt on Wednesday morning that I brought her to, and then I brought her home for her first visit since she left to stay at the crisis home on Sept. 1st. She did really good, and it went super well and was so nice to have her home.

At first, she just walked around the house, kind of taking it all in and saying that she remembered different things. Then she played for awhile with Zeke and Imani, and spend a ton of time going through all the toy catalogs we have gotten in the Sunday papers. She also spent some time drawing.

When it was time to go, she did not put up a fuss at all. I had told her the day before the two rules were that if she got out of control, she would have to go back to the crisis home right away, and that if when it was time to go, whether she was being good or not, if she threw a fit and did not cooperate, she would not be able to come again for a home visit and that we might have to call the staff to come and get her.

Then this morning, I picked her up at 10:00 and brought her home. We were planning on leaving for my brother Tom's in Andover around 2:00, so she would have some more time to spend at home. Once again, she did great. She played a long time with Zeke and Imani, played catch with Hezekiah, and did some more drawing.

At Uncle Tom's, she was awesome. She asked Aunt Paula to show her how to knit. Paula knows how to crochet, and knit a little bit. But for a couple of hours, literally, Akila knit. She needed a good deal of guidance, but Aunt Paula was patient with her. The biggest challenge was that at the end of the night, Akila wanted to take the knitting stuff with her to the crisis home. Knowing that they are not going to allow knitting needles, I said no. She thinks it would be fine to have them there, I explained why they couldn't have them. She disagreed, and put up a fuss for awhile.

Normally, this would have been explosion time. It was not. Amazing. We normally can't stay as long as we did today. I had told the home we would have her back at 7:00, we got her back at 8:30 and could have stayed longer. I am definitely feeling ready to have her come home next week, and am looking forward to it. This medication change has been amazing. There have been other times when she has started on a med, and we noticed a good difference. But I have never noticed a difference this big. She was knitting for at least 2 hours. In the past two weeks, she has put together two 500 piece puzzles.

I am thankful for so many things on this Thanksgiving day. I am thankful for crisis homes and the staff that work there 24/7 and on holidays. I am thankful for medications that are able to help people function and become or stay healthy. I am thankful that after 3 months of unemployment, Michael will be starting a job on Monday. I am thankful for all 4 of my children, and that one is working so hard to behave, and the other 3 are working hard to support and love her. I am thankful that my neighbor/mom Kathy, has finished her last treatment of chemo and can now try to recuperate and get back to the active life she loves to live. I am thankful for some newly deepened relationships with some faithful women who are parenting tough kids. I am thankful for the blogging and the opportunities that we have to share and support each other through this virtual world. Mostly, I am thankful that Jesus laid His life down for me, and shows endless mercies on me daily.

Two words, meant a lot

2011-11-21T13:32:00.002-06:00

Akila was great yesterday when she was with us. The one "Akila moment" was when Zeke was checking us in at church. Our church has a computer system that you check in on and we have a bar code thingie we can scan so the kids name tags print out. The kids take a turn each week scanning the bar code and printing the name tags.

It was Zeke's turn, and he ran ahead to do it. I caught up to him when it was his turn in line. Akila came up and went nuts as she thought it was her turn. I told her it was Zeke's turn, and she disagreed, in "Akila fashion", but not quite as excessively as normal. She was argumentative, rude, and called me a liar. I ignored her and was just trying to walk Zeke through the computer. She kept calling names, and when Zeke was just about done she walked away.

I turned around and a father who was waiting in line behind us smiled and said, "It's OK, " very encouragingly. I smiled said, "thanks, it's our life". What was so nice about this brief interaction was that the man was understanding, encouraging and not judgemental. I know he only said two words, but his smile, body language and patience spoke also. It was huge, and it was what I needed.

Often, when in an almost identical situation, you can see, feel and hear people's judgement and impatience- even at church. It was a beautiful moment, I have thought about it more than once in the last day.

The other great thing about this situation, was that when Akila walked away, she went to the water fountain. When I caught up with her, she had already moved on and was no longer angry. This is unheard of, and she has been doing this for 8 days. I really think that the new med, Abilify, is helping her a lot. There have been several instances at the crisis home, where she could have gone off the deep end, and did not. She was even kicked by another consumer last Thursday evening and the staff said she handled it really well. This is nothing short of amazing, nothing short of the Lord intervening when we really needed some hope.

Other than that little incident at church, she was very well behaved yesterday. I think we are getting very close to the point where she will be able to come home, and I am really looking forward to it. This is nothing short of a miracle, another thing I am so thankful for. God is good.

Pointing the finger

2011-11-18T19:29:00.001-06:00

Akila is easily offended, and it is really difficult to deal with. She was offended last night because of the after school bus driver. She actually kept on complaining that he "abused" her. She is so going to get us, or someone else in big trouble someday with a false allegation. She was screaming that a staff was raping her last week while he restrained her. Can you say ticking time bomb?

Yesterday, the bus driver would not start to drive until the kids cleaned up some kind of mess they had made on the bus. I am not very clear on the situation, as over the phone, Akila gets rambling and mumbling, and is very difficult to understand. But he would not leave, and said he would sit there until it was dark. She feels this was abuse. I explained to her that is not abuse, and if they had made a mess, they did need to clean it up.

The comment about staying there until it was dark, is what seemed to put her over the edge. I explained this was just a figure of expression, that he was making a point that he would wait as long as it took for them to clean up the mess. But she did not get this at all.

Then there is a student at school who told her to shut up. She is very offended. This student also takes dance at the studio I work for and where Akila takes dance. She thinks I should kick her out of dance. I explained that I could not do this, and explained all the reasons. She of course disagreed, and said I was abusing her by not kicking this student out of dance. We went round and round. I tried to change the subject, to no avail. I also explained that she has done a lot worse at dance and has never been kicked out. She of course disagrees.

Today at school, something happened with a student also. I have no idea what, as she was so irrate as she was explaining it to me on the phone, that I did not understand any of it. But she was mad at her aide also, who was "rude" to her. She also gets going on the staff at the crisis home, and how rude they all are.

This is such a hard thing to deal with, as she would honestly sit and complain about others actions for hours. She just cannot see that it was her actions that usually caused others to have to do something that annoys her, or something she thinks is unfair or rude. Right now, when she is like this on the phone, and I can't distract her, I hang up. I'm not sure if that is the right thing to do, but I do it. Soon, I won't have that option.

Blaming language

2011-11-18T16:07:00.003-06:00

I recently found, or should I say noticed, some language that has bothered me a little and I thought I'd share it with all of you and get your opinions.

FASD is a primary disability, one that a child/person is born with. Then there are what are called, "secondary disabilities". This is where I have recently been a little bothered by one of the definitions used by some organizations. A definition that an organization I am familiar with has been using for secondary disabilities is: "Secondary disabilities are those that develop as a result of failure to properly deal with the primary disabilities."

Let me tell you the part of this definition that bothers me, if you haven't already figured it out. This part, "that develop as a result of failure to properly deal with". This to me, sounds like if us people who are parenting and loving our kids, had worked harder, and "more properly", our children would not end up with the secondary disabilities. Akila would not have ADHD if I had only been more proper in dealing with her brain damage. She would not have a learning disability if we had not failed to deal with her properly.

I know this organization probably does not mean it like it sounds. Or maybe I am misinterpreting what they are saying. But that is how it sounds, like I failed. And all of you out there who are parenting and loving our children with FASD, have not done it properly. According to this language, we failed. And this definition is being used when training people.

I did send an email yesterday with my opinion on the wording. I was not able to find their source on the definition, and I am guessing they have one. I searched through Ann Streissguth's book, "Fetal Alcohol Syndrome" where she talks so much about secondary disabilities. She is one of the main researchers on secondary disabilities. I did not find this definition.

Here is the definition that sounds better to me: "Secondary Disabilities are those not present at birth but occur as a result of the primary disabilities." Yes, Akila has ADHD, learning disabilities and other mental health issues. They are for sure a result of the prenatal exposure to alcohol that resulted in brain damage.

I know that some people may think that I am being too sensitive, and maybe I am. But it worries me that we are training people out there, educators, medical professionals, students, etc. with language like this. If someone is not involved enough within the field of FASD, or within the family structure of a family living with FASD, they could make some serious assumptions about us if that is the definition they believe.

I know that it is not our "failure" that caused Akila to have ADHD, and some of her other secondary disabilities. But people like me who are parenting children with FASD, get enough messages, subtle, and not so subtle, that we are failing. No matter how involved we are, no matter how hard we try, no matter how much we learn, we do go through periods of feeling like we are failing. How could we not with the extreme behaviors we are facing daily, hourly. We certainly don't need advocacy organizations to use language that sends the message we hear daily from the majority of the world.

I have said my peace.

Stupid van

2011-11-17T18:57:00.004-06:00

When Akila called after school today, she was not in a good mood. She was whiney and complaining like she normally has been. Hoping that she is doing OK the rest of the evening, and not spiraling back into the abyss.

The stupid van didn't want to start this morning (notice the word stupid in my vocab a lot lately? I am kind of immature, a teenager at heart!). Michael was going to take it to Honda to get new tires, they have a special and the garage we were at this week said the front tires were in really rough shape. Perfect. So he ended up at Honda, and had them fix the exhaust. They said the battery had something faulty with it also so we said to fix that also. Basically, we just about have a 1999 Honda Odyssey with over 184,000 miles on it, and all new guts. It should be good forever now!!!! But I know better.

Good news is that I found our receipt from 18 months ago on the battery and it was still under warranty. So our bill today for 4 tires and a fixing the exhaust system was just $737. Ouch!

But the even better news is that Michael has accepted a position and will start the Monday after Thanksgiving. What a relief and a blessing. It is close to home which is nice as his job the past 5 years has been at least a 30 minute drive (in Eagan). We will have the best health insurance coverage we have had in over 10 years, phew!!! The salary is much, much lower than what we are use to, so we are going to have to make some changes for sure. But we are thankful to the Lord for this opportunity, and will work hard to figure out how to make it work.

Hope

2011-11-17T01:03:00.002-06:00

Akila really has had an awesome week so far, and I am so thankful!!!! She started on a new med on last Friday, and has a great behavior streak going that started on Saturday. I really do think it has something to do with the meds, not just a fluke.

Tonight, she was in a great mood on the phone, both times. The last call, she put one of the staff on the phone who told us that she has had a great night, been cooperative, enjoyable and working hard. She said she hasn't worked this week yet, but when she worked last week with Akila, she struggled greatly with her. She said it was like Akila was a different child.

Oh how I pray this can continue. It is amazing how much hope this can give you. As I have been very honest and open with, I am not convinced. We have had too many let downs over the years, and I have learned to protect my heart from let downs. But I am hopeful. I know God can do amazing things, and work wonders. I have ultimate faith in Him.

I am also experienced enough with medications, to know that even if this med is helping her right now, it more than likely will not always. The majority of meds seem to wear off eventually, or their effect is not as strong long term. But even if this med gives her a good month, or a couple of good months, it is worth it. We are in survival mode, and we will take what we can get. Right now, I am just happy to hear good reports, after several weeks of rough reports, and lots of restraints.

On another note, I don't think I mentioned that our minivan broke down last week. We actually had an appt for this Monday to have it looked at. The lights on the dashboard started flashing on and off all the time about two weeks ago, so we made the appt. Plus, the steering wheel has been shaking for over 6 months and gradually getting worse. Then, last Tuesday, the van went dead and we had to have it towed in. Oh yeah, and over the weekend before it went dead, it started to sound really loud like a race car, and exhaust/muffler problem probably. Great.

During our current situation of unemployment, having one car is not so hard from a time perspective, since Michael doesn't need a car to get to work. But it royally stinks more than normal from a financial perspective. There was just one day last week when i had to get Akila to a Dr. appt, which was at the same time Michael had an interview. Dorothy and Robert were kind enough to let us use their extra vehicle for the day. Other than that, it has worked just fine having just one car.

We have a local garage that we have found where we love to go, when we have to. The two guys who run it are top notch, very ethical, and very fair priced. Turned out, the alternator they put in it in June was faulty so they replaced it at no charge since it was under warranty. But we also needed new engine mounts, all 3 of them, and that was not an easy process. $650 later, it is running. But it is still super loud. He said that the shaking from the bad engine mounts, effected the exhaust. It is totally fine to drive, and we can decide when to replace it in the future. So basically, you will know when we are arriving anywhere, as it is fairly loud. Fits right in our neighborhood!

Racial slurs

2011-11-15T23:10:00.002-06:00

Akila has been using racial slurs for several years now. She often doesn't use them in the right context. She will call me the "N" word, and a black person a "stupid white person". Most of the time though, she will use them appropriately. Haha. Appropriately. Wrong word. What I mean, is that she will call a white person a stupid white person, or a black person a stupid black person.

I and many others have had conversations with her about this, and how inappropriate it is. How it can and will get her into some serious trouble someday. She obviously doesn't get it, and uses these words when she is not very regulated, and is having a hard time controlling everything she is saying, and doing.

And now we have a new problem. A taxi is what is driving her to and from school while she is in the crisis home. Mpls Schools transportation says that is our only option. Not a great option. Different drivers all the time, and they are obviously not trained in dealing with kids, and for sure are not trained to deal with special ed kids, and are especially not trained to deal with Akila! There have been several issues. The taxi company has complained about Akila, how she won't buckle up, stay buckled, and is rude. And Akila has been complaining daily about the drivers and how rude they are.

Again, it takes a lot of patience to work with Akila, and these people are not trained. It turns out that Akila got the pack of cigarettes mentioned here out of the taxi. She said they were on the floor and she picked them up and took them. Lovely.

But here is the new problem. Many, I think the majority, of the taxi drivers are Somalian. Not a problem in and of itself, except that this is the new group that Akila hates now and is using racial slurs against. Last night, she was going off on the "blankety" Somalians. I told her that it is OK to be frustrated with someone, and to not like them even. But it is not because they are Somali that she has an issue with them. It is because of what they said or did. Now don't get me wrong, I'm not saying they did anything wrong even, but in her eyes they did. I have been saying that to her for months, as she complains about this staff or that staff at the crisis home, and brings their race into it.

I am now nervous, about when she figures out that several of the drivers are more than likely Muslim, and starts to say derogatory things about their religion. It is one thing for the crisis home staff to get called racial slurs, they know it means nothing coming from a child with brain damage (although I know it is still annoying), but for a taxi driver with no understanding of her disability, it might not go over well. So one of my new prayers, is that she can control her mouth with the taxi drivers and that if she doesn't, that the drivers will respond with patience. Lord knows that all who work with and love Akila, need lots of patience.

"Better" days???

2011-11-15T09:48:00.002-06:00

Akila has had a couple of better days at the crisis home, isn't that awesome? Then why am I not excited about that? Because today at 1:00 we have our team meeting.

At the meeting, the manager of the home will report that she has had 3 better days, where she has made better choices and calmed down more quickly. Everyone will be really excited, and think that we are getting close to having her settled down. Wouldn't that be lovely if that were the case? I pray with all my might that it is the case. But can you blame me for thinking that this is just a phase?

She has more than once, and in the past few weeks even, had several better days in a row. That is always how she has been. It use to be that she might have a good week, followed by two rough weeks, or two good weeks, followed by 3 rough weeks, or something like that. In the past 6 months, it is measured more in days.

As awesome as all of the staff at the crisis home are, and they are great, and as awesome as the leadership team is that meets every two weeks to talk about her, they still don't know her like I do. They don't know her patterns, her cycles. Same goes for the school. They have been totally awesome, but I don't know if they really know what to think when I tell them that she will start to go down hill in November, as she does every year. In many ways, I think people think that I am being negative, pessimistic, and that Akila will live "down to" my low expectations if I have them. But they don't know her as well as I do, nor do they love her like I do. And that is not at all a judgement or a bad thing, it is just a fact. Like I said, I think they are all really good at their jobs.

So, I will bring the incident reports with me that the crisis home mails me after each "hold" (restraint). It is truly comforting, if that is the right word, to have written documentation from this home of how Akila acts during a rage. One report, which I will not give you all the gory details from, is very interesting. The staff writes about how after she was very verbally aggressive (yelling racial slurs and swearing), and physically aggressive (punching with a closed fist, kicking, scratching and stabbing with a pen) the staff eventually after several attempts at redirection, decided to remove himself from the situation since Akila was mad at him. He was going to go downstairs, and while doing so, Akila ran at him and attempted to push him down the stairs. He was able to retain balance and did not fall. He went downstairs and she then turned her aggression to another staff. He returned after 2 minutes and ended up having to restrain her for quite awhile.

There are more details, that are even harder to share- I will spare you. The entire incident report, could be one that Michael or I wrote a 100 or more times. Just put our names in, and it is our life. I am glad she has had a couple of good days. My sincere prayer is that the medication is helping her to be more calm and make better choices. But I am not ready to believe that the aggression is over. I will share that at the meeting, and once again, I will feel like I am being a pessimistic mom who might be perceived as not wanting her child. I want her more than anything to be able to live with us. I am totally willing to put up with all the drama, all the querks, all the swearing, all the challenges. I just cannot put up with the physical violence.

So please join me in praying that these last 3 "better" days, are the start of something new, are an end to the violence. But also please join me in praying for what to do if it is not. That is what is keeping me up at night and is breaking my heart. What do we do?

Serving families w/special needs children- a unique idea

2011-11-13T20:59:00.002-06:00

I just got an email from a family in our church that is trying to serve families living with special needs children. A small group of families is banding together to provide a date night for families like ours. How cool is that? I am in tears at the mere thought of this.

Often it is hard for people, families, staff, agencies, etc., to figure out how to truly support and help families that are living with special children. People want to help, but don't quite know how. This is an awesome idea of how to support families like ours, and I am so thankful to God that people out there are praying for us, and trying to find unique ways to support us.

I learned when my mom was sick 6 plus years ago, to not turn down help. I learned that when people say, "let me know how we can help", this usually means they have no idea how to help- and rarely it means that they also don't want to get involved (the majority of people really want to help, but just don't know how, or feel uncomfortable). I have learned to suggest a specific thing or two I am willing and capable of doing when I think someone needs help. I also think it is a blessing to "allow" someone to serve you or help you. I know that when I offer to help someone, I truly mean it and feel better when I am allowed to serve someone.

I am so excited that this small group has found a way to "walk the talk" of a Christian. They are not talking about it, they are doing something. I have politely declined as the date night is next week when Akila is still at the crisis home. Michael and I have been able to get out several times during this respite as the kids can stay home for a few hours and take care of themselves now. I guarantee that if she were at home, I would be all over this wonderful invitation.

Not what I expected to find...

2011-11-13T17:56:00.002-06:00

When we went to pick Akila up for church this morning, I went with her into her bedroom while she was finishing getting ready. I grabbed her backpack to look through it for the missing money and she went ballistic. I told her I just wanted to get the fundraiser info so I could turn it in, but she wouldn't have anything to do with it. She obviously had something to hide in it.

On Friday after I found out she had "lost" the money from the fundraiser, I talked to one of the lead staff at the home and asked them to be on the lookout for the money. I also asked them to check through her room on Sunday when we had her at church. After she acted very suspicious, I asked the staff to for sure check through her backpack and told them how she was acting.

Akila was on edge today, kind of the typical Akila. Just about every Sunday, after we leave church, she is trying to remember the name of some of the songs they sang in Sunday School. When we don't know the name of the song, after she tells us 4 or 5 words, she gets very upset. Name that Tune is pretty hard with only a few words, no melody (she doesn't sing it, she just says something like "Christ Alone" and thinks we will come up with it). We had many guesses, but none of them satisfied her, although I am pretty sure we guessed the right song. It is not a game for her, she actually wants to know the title and doesn't. This causes much angst. Even when we are positive, tell her it sounds like a great song, tell her we know the song she is talking about but can't think of the title. Nothing matters to her except if we come up with the title, the right title in her mind at least. It is really fun.

Today, while she was getting upset, Zeke said something insightful. He said, "Akila, when we spend time with you, the purpose is to enjoy you. Not so you can be angry." She agreed, but kept on her pursuit of Name that Tune.

After we had lunch, and brought her back to the home, we all went inside to see a puzzle she has been working on. As Michael and the kids were in her room, the staff brought me aside and told me what they found in her backpack. A pack of cigarettes. NOT what I was expecting. I didn't even say anything to her. I need to, but am avoiding it as she is going to get yucky on the phone. But I guess I can just hang up. Maybe I'll call her now.

Stupid school fundraisers

2011-11-11T21:44:00.001-06:00

Yes, I just used the word stupid in my title, but with good reason. I hate school fundraisers. Let me clarify, I mean the ones where they want the kids to sell "crap"; over priced trail mix, frozen cookie dough, trinkets, etc. I think they are stupid, and I can't hide my emotions about them. I believe I probably blog about them every year, but I am too lazy to go back and look.

I think that I mentioned withing the last few weeks that Akila called me on the night that the school handed out the fundraiser info. She was gung ho on selling it and the staff had told her that they don't do it, she would have to do it with her parent. I think she wanted to go door to door. When she called me, I reminded her that we never participate in these fundraisers. I always do a straight donation to the school, as they get MORE money that way, instead of getting the 20% or whatever it is that they get from the sales. Won't be doing it this year due to our current unemployment situation, but I have every year.

Plus, in a larger family, there is now way for each kid to sell enough stuff to get the STUPID prizes that get them so excited about. Who out there wants to give my kids a limo ride, so they can stop being obsessed with selling crap to get a limo ride!!!!!!! So dumb on so many levels. Then add a special needs kid into the mix, and it is a horrific situation.

Anyways, I reminded Akila how we never participate in them, and she just fought with me. Eventually, I had to hang up. Later, she was restrained. The instigator of a horrible evening, once again, was this stupid fundraiser. Have I mentioned yet that I think it is stupid? I'm a little obsessed with that word tonight, forgive me.

Tonight, Akila tells me that she lost two five dollar bills. What? I asked what she was talking about. She sold something out of the "stupid" book (I'm calling it that, not her-shocking) to her after school teacher. She now can't find the money. Perfect. I tried to get her to think of where she put it,but she kept getting mad. I also tried to remind her that this is one of the reasons why we don't participate in the fundraiser. It is too hard to keep track of the money. Now, more than likely, I am going to have to pay $10 to order this teacher's item.

I will repeat it again. Stupid school fundraiser!!!!

Structure within the home

2011-11-08T15:14:00.003-06:00

I was just trying to explain to somebody how I anticipate things working out when Akila returns home. I fully expect things to be nutty again, and for it to be back to "normal" fairly quickly. I said that we plan on trying to implement some of the structure that the crisis home has, but we can't do it all.

After all, we want to remain a home, and if you place to much structure within the home, it will not feel homey. That is my opinion. One of the things they have been doing at the crisis home, is having Akila shower right after school before she can do any of her choice activities. She fights this every day. She did at home as well, and we normally tried to get her to do them in the evening. They did originally, and switched it to after school due to the problems that would arise at bed time.

She complains to me almost every day about the shower schedule. It infuriates her. I tell her that I agree with them and that she will have to do it at home also. She is not happy about this. Well, here is what I anticipate. All 4 kids get home from school, and I spend 30-120 minutes trying to get Akila to take a shower. While the other 3 kids sit and wait for attention/help. And during this shower game, she will be violent. There will be restraints. It will not be pretty. They have been doing this shower schedule with her for 9 weeks, and she is still fighting it. Not to mention that when she gets home, she will think that all the rules at the crisis home go out the window. Even though I have told her that we are going to implement some of the same rules, including the shower schedule. Blasted puberty and body odor issues. I so wish she did not need a shower everyday!!!!!!

So I am struggling with which of the rules to bring home, what kind of structure makes sense within our household. I admit I am not a structured or organized person. It is not in my nature. I am willing to do some of it for sure, but I don't think we will be able to make enough changes that it will make a big enough difference.

Anticipating non-school days with joy

2011-11-06T17:12:00.002-06:00

There is no school tomorrow. Normally, I start dreading a non-school day a few weeks before it arrives. It has been a strange phenomena while Akila is staying at the crisis home to not have this feeling of dread lurking up on me.

I actually look forward to these days lately. Unfortunately, when Akila is home, a non-school day means another full day (vesided the weekends), of putting out fires, staying off rages, protecting the other 3 kids and other fun things like that. Tomorrow, we are going to have a playdate with another family and get out of the house and do fun things, without having to worry about issues that may arise. Not saying we won't have any issues, but they will be the typical kind. Another thing I look forward to on a non-school day, is that I get to sleep in. When Akila is home, she is my alarm clock. I am a night owl and not a morning person, so this is a true treat.

I know that Akila will be coming home either at the end of this week or within a few weeks, but I am making sure to try to get as much out of this break as possible. I know things are going to change immensely when she returns. And as much as I have truly enjoyed this break, and am so grateful for it, there is still a part of me that longs for Akila to come home so I, or we, can feel whole again. I will easily feel differently after she has returned and starts beating on us again.

A sidenote- please keep us in your prayers as it pertains to employment. Michael is still unemployed (since Aug 15) and he has two interviews this week. Pray for wisdom if he is offered either of the jobs, as they are both below the pay range he is looking for. But God knows what we need to be sustained. It would be a real blessing in timing for him to have a job before Akila returns home.

Staff

2011-11-05T09:59:00.002-05:00

At the last team meeting at the crisis home, I shared my appreciation at how good the staff are. I told the manager and director that it is a very odd feeling to walk out of the house while your child is in a frenzy, calling names and obviously escalating.

They said no worries, that is what they are trained for and paid to do. None the less, it feels very strange. I will not lie, it also feels very good in an odd sort of way. To be able to walk out the door, or hang up the phone when she is completely dis-regulated and acting out of control, is a nice option. It is an option that when we are living with her 24/7, we wish we had sometimes.

This is one of the gifts of this break, this respite. To be able to walk away or hang up. And as good as it feels, it also feels very strange. Akila is my daughter, I love her deeply, I am responsible for her. And to leave her in a rage, knowing that she will more than likely be hitting, kicking or biting the staff, is an awful feeling.

It is similar to when your child, neuro typical or not, bites a kid on the playground or in preschool, or hits them. You feel awful. You apologize to the other parent, assure them it will not happen again and teach your child it is wrong and give them a consequence. The neuro typical child, will more than likely learn not to do it again. The brain damaged child, will more than likely not learn. Either way, it is embarrassing, and you feel awful. You apologize.

Each time I get a call that Akila had to be restrained (she was twice yesterday), I want to say can I talk to the staff she was attacking and apologize. Again, the manager and director tell me they are use to it. They also say it is easier if the parent does just leave when it is getting dicey. I totally understand that. It is similar to when I work in the church nursery and a child is having separation anxiety. It is much easier if the parent just bolts instead of trying to acclimate the child to the environment. We can do that, and the longer the parent stays, the less likely we will be- usually.

I keep wondering how much they pay the day to day staff. I'm guessing no more than $15 an hour, but hopefully I am wrong. These staff put up with a lot. Akila is not only hitting, kicking and biting, but she is also using racial slurs. Saying she hates black people one minute, white people the next.

The huge advantage these staff have, is that they get to go home and decompress. Parents don't get to do this. Now, maybe one or two of the staff also have a challenging child at home, and I can't imagine doing it at work and home. Akila will be coming home in the next few weeks, and we will go back to 24/7 challenges.

It has been nice to let my brain decompress these past two months. When Akila is at home, I am always thinking ahead, hot to avoid a rage or an issue. Then during a rage or issue, I my brain is at a heightened arousal mode obviously. After the rage or issue, my brain is processing what just happened, and thinking of ways to avoid it in the future. And the cycle continues, on average 5-20 times a day. Yes, my brain needed this rest, as did my body.

Not only is it hard on the body to be hit, kicked, and bitten each day; but it is also hard to restrain her. My lower back was not good going into parenting Akila. Now, it is a mess. The stress also does a job on my body. I have gained weight, and I am sure that some of my headaches are a result of the stress (although I have struggled with headaches/migraines since I was a teen).

I am so grateful for staff people who work in crisis homes, group homes, and residential treatment centers. I am sure that some of them are not fantastic, but I have only ran into fantastic ones at this crisis home. What I also appreciate, is that the staff at the crisis home, especially the director and manager level of staff, seem to understand FASD. And as I have shared, that is hard to find.

A Legislator

2011-11-04T22:01:00.003-05:00

Last weekend, our local state legislator Bobby Champion was door knocking, and he came to our door. I listened to his spiel about light rail in North Minneapolis. Then, he graciously listened to my spiel on FASD. To his credit, he was a little bit familiar with FASD. He had some ideas about working with the churches to get the word out.

He even said to give him a call if I wanted to work with him on this. Well, what do you think? Am I going to call? YES!!!! I told the MOFAS Policy person at the MOFAS Annual Meeting on Wednesday night also (right before I went to the Kitty Kat Club- Meooowww!). She was excited and wanted to make the connection with me.

I mentioned to Mr. Champion that I believe FASD is what is causing so many issues in our community. The gangs, prostitution, drugs, etc. I watch my neighbors, I see pregnant women drinking, I see young people and adults who have all the behaviors of a prenatally exposed person, and I know we need to hit neighborhoods like mine HARD!!!! I am not saying that we don't need to hit middle and upper class suburbia also, we do. I especially see the light to moderate social drinking that is effecting tons of unborn babies. But in my neighborhood, I am seeing heavy to severe drinking effecting unborn babies (again, I know it happens everywhere, but I believe it is happening at an alarmingly high rage here).

I am excited that I may have found someone who will join "our" team. I just have to follow through. And I will!!!

Kind, firm & consistent

2011-11-04T09:33:00.003-05:00

I had mentioned in this post that I was going to write about a report that was done by an OT at the crisis home. I'm finally ready.

Now, the main reason I can give this lady some slack, is that she was not able to interview us, so it is harder to get the full view of the situation. But even considering this, she has several false things in the report. When we did the intake at the crisis home, we brought a stack of paperwork, and were interviewed. I have looked through the paperwork we gave, and am not sure where this info is coming from.

One really interesting mistake, is that the report says "In addition, she has a past diagnosis of Alcohol Related Neurodevelopmental Disorder (ARND) prior to her diagnosis of FAS." Interesting, since Akila has never been diagnosed with FAS. But OK, maybe a staff told her that. She also states that there are conflicting reports as to whether her siblings are biological siblings or not. Again, maybe the staff were confused on this one. No big deal. She also stated that "reports indicate that Akila had prenatal exposure to cocaiine and alcohol." It was heroine, but doesn't really matter I guess.

As I read further in the report, what bothered me were several subtle phrases that basically put the blame on us as parents. There is a phrase that says, "The kind, firm consistency seems to be effective in order to handle her acting out behaviors". This statement follows an area talking about how her aggressive behaviors have diminished. OK, great advise. If only we would be more kind, firm and consistent, all our issues would diminish. Thanks. I've got to write that one down on the fridge so I remind myself of it hourly. Kind, firm and consistent.

It was also reported to the OT, that "Akila has overtly sexual behaviors and has reportedly sought out adult sexual sites on the Internet." This is true, we made sure the staff knew about this so when they brought Akila to the library for outings, they would then monitor her computer use. The next phrase, is yet another subtle message; "It is not clear where her initial exposure to this occurred". Later on in the report, she states again that Akila "has a history of sexual behaviors far younger than that which is expected and it is unclear how she was exposed or learned of such behaviors." Then, "It is highly recommended that access be limited to any inappropriate Internet sites as this puts her and others at risk." Oh, that's what we should do, "limit her access to these sites." Good to know. That isn't why we told the staff to control this one, and to watch her like a hawk at the library (since public libraries don't have controls on the computer as it abuses our free speach- barf!). Kind, firm and consistent- I must keep reminding myself. I also like the "limit" her access, instead of "deny" it, or something like that. Limited exposure to that inappropriate stuff is OK, right?

I am sure that this OT did not mean anything by these few phrases that I felt annoyed by. The problem, is that we as parents of FASD kids hear these things over and over and over by a variety of professionals. Sometimes more subtle, and often not at all subtle. I know these professionals don't necessarily mean it in the way that it comes off, but I am sure that some of them do. I think that this OT should have gone the extra step and called us, especially to clarify some of the things that she knew were conflicting. However, I still think she would have had some of these subtle messages.

When I did the training earlier this week with the counseling center staff, one of the things I listed as a stressor for marriages, is the blame and judgement factor that we as parents always feel. It is often a very deflating feeling to consistently get this message. You can't help but sometimes really start to question what you are doing, and if you should be doing this at all.

Somebody put a comment at the end of the post I mentioned earlier in the first sentence. In that earlier post, I wrote about how the OT report annoyed. Here is what an anonymous commenter posted, "Pride sucks. Get over it Barb, and receive the points of views. In order to see a gem shine, it has to go through the process. " While I understand what he/she is saying, I don't think that they understand what my point is.

Yes, pride does suck. But my point is that I have my head between my legs right now. We are so at a loss for how to parent Akila, how to deal with her aggressiveness, how to deal with her anger, that we have agreed to have her in a crisis home. We are basically saying that we are in over our heads and need help. That is why I requested an OT evaluation. I don't know what to do, and I am asking for help. Not sure there is a lot of pride in that.

I will totally take some of her points from this OT report to heart, and move on with some of her recommendations. What my main point here is that the professionals need to be careful in their language choices, in the subtle messages that are hidden behind some of their words, so they can empower us parents instead of make us feel more guilty than we already do. What I guess I am saying, is that the professionals need to be kind, firm and consistent.

Two types of kids on the spectrum

2011-11-03T20:41:00.003-05:00

Akila had two good days, she was pleasant to talk to on the phone both times yesterday. Today the director of the crisis home called and said the Psychiatrist thought we should put her back on the risperidone, on top of the topomax that was recently introduced. We decided to hold off awhile first, to see if doubling the topomax which we started on Monday evening helps.

Then tonight, she had a bad night. Just when you think something might be helping. On the phone around 5:30 or 6 pm, she was yucky. The around 8 pm I got a message that they had to restrain her. She was upset about something, started hitting, kicking and biting. Then she went after the staff with a butter knife (other ones are locked up of course). That's the Akila I know and love. I say that jokingly, but seriously also. I don't really expect her to stop with the extreme aggressiveness. I would like to be wrong, I would be fine with that.

Last night, while Dorothy, Julie and I were hanging out, we were talking about the two types of kids on the Fetal Alcohol Spectrum. We know that there are several diagnoses on the spectrum, FAS, ARND, pFAS, ARBD and others (I think that tons of kids with LD-Learning Disabilities and ADHD are on the spectrum also, if they were prenatally exposed to alcohol). But regardless of what their diagnosis is on the spectrum, there seems to be two types, maybe more, but two main type of kids- or adults for that matter. Not sure what to label the two types. Could be "Excessively Aggressive" and "Non-aggressive"; could be "Manageable" and "Unmanageable"; could be "Violent" and "Non-violent". There were a few other names we had for them, but they are only the type of names you can share among close girlfriends, if you know what you mean. We all need to let lose and vent after all.

It also seems, that the ones in the tougher category, the "Violent" category, more often have a higher IQ, whether they are FAS or ARND. This would be consistent with research that has shown that kids with ARND and higher IQ's, often struggle in life more. I was talking with another friend today of a ARND kid who has a lower IQ than Akila and struggles more with learning. She also struggles with behavioral issues, no doubt about it. But there is also more hope, and a sense that she will be able to have an "easier" future. Well, easy is the wrong work, but hopefully you know what I mean.

Right now, Akila is still a tiny little thing. She weighs about 90 lbs, and we are still able to restrain her (although I do have some good back pain that is aggravated very time). Watching her violence, her anger progress as she gets older, is pretty scary, and profoundly sad. It is so sad to see her full of anger, over the smallest of things. Today, she is mad because the school sent home the stupid fundraiser junk.

I should say, the really STUPID, rotten horrible fundraiser junk. I hate these things, even for my neuro-typical kids. I refuse to do them. I hate the way they pump the kids up for the limo ride, and all that crap. It is especially hard for families with more than 2 kids. But every time they send this CRAP home, it causes problems with Akila. She was mad and yelling on the phone. I told her to go ahead and sell some. Well she didn't know who to sell it to. I said EXACTLY!! I refuse to bother all my friends, family and neighbors with buying trail mix at twice or three times the price as it is at Target.

Anyway, I digress. She was mad, angry, and I am assuming this is what caused her rage. She has raged at home over wanting a certain type of cereal that we are out of. And before she gets to the point of raging, she often is consumed with anger for up to two hours, or even more. Last week during one of her rages, they documented that for 1 hour 45 minutes, she was angry about something, before they finally had to restrain her, which they call a hold. In the past 4 or 5 months, she seems to be angry 50% of the time, and that may be even less than it is.

It is sad. I think about how I feel physically and emotionally when I am angry, and it is horrible. To feel like that all the time, and to seemingly have very little control over it, that is sad. I might have to talk with the Psychiatrist about that next week- the constant angry state is what is making things really tough.

Kitty Kat Club

2011-11-03T00:52:00.003-05:00

Julie, Dorothy and I went out tonight, it was great fun. We normally have been meeting in Elijah's hospital room, or in the apartment by the U of MN where Julie is having to stay with Elijah now. Tonight, Julie had a nurse on and we went out!

Today, I was trying to find a place where we could go out. I really wanted a coffee shop style place with comfie seating, but one that is open later. I was googling restaurants with couches, and places like that. I found a place in Dinkytown at the U of MN which is called the Kitty Kat Club, check it out- the pictures don't even do it justice and they look amazing!

It was the coolest looking place on the inside, we were stunned. There is a huge room with different seating areas with old couches and chairs, and antiques everywhere. We got there earlier than normal, 8:00 and it was great. Had some diet cokes and french fries (from Annie's Parlor- it is under Annies, and they share the kitchen and just get food from Annies), and good conversation. Until the band started. Then it got kind of loud, and we moved down the street to a coffee shop that is open until midnight. Then we got kicked out of there. So we ended much earlier than normal, often we hang out until 2 am or later.

It was pretty fun to get out and to be in such a cool place. The atmosphere was great, I'm sure it is different on a weekend!! It's just too bad the band chased us out!! I guess we should have just gotten up and danced, now that would have been entertainment for those youngsters!

Research study in Mpls area

2011-11-02T10:03:00.002-05:00

If you live in the Twin Cities, Delve Research is looking for 6-10 year olds to do a market research study on Nov. 12th. It is taste testing Gogurt. It compensates $50 and they told me to spread the word as they need more kids. Call 952-858-1550 if interested. Zeke is going to do it (only 1 kid per family, and it is his turn).

Swearing

2011-11-02T09:39:00.002-05:00

I am post happy this morning. Not only did I do the training yesterday that has been keeping me swamped, but I stayed up past midnight (6th night in a row) to finish some dance work (needed to charge all of the customers for costume fees that were due Nov 1st, not the best timing since I wanted to come home from the training and veg!).

My friend Kari's blog recently went private, but she always has great posts, so I commented to her today that I am just going to have to copy and paste her info in my blog. She did some research on swearing and it's connection to the brain. Here is what she came up with:

Many studies suggest that the brain processes swearing in the lower regions, along with emotion and instinct. Scientists theorize that instead of processing a swearword as a series of phonemes, or units of sound that must be combined to form a word, the brain stores swear words as whole units [ref]. So, the brain doesn’t need the left hemisphere’s help to process them. Swearing specifically involves:

The limbic system, which also houses memory, emotion and basic behavior. The limbic system also seems to govern vocalizations in primates and other animals, and some researchers have interpreted some primate vocalizations as swearing.
The basal ganglia, which play a large role in impulse control and motor functions.

Swearing is connected to the limbic system and basal ganglia, located in the interior of the brain.

Interesting, don't you think? Living with a child who swears like a sailor, is no fun. I have gotten use to it, but it still drives me crazy!!! I work really hard to try and not focus on the behavior and to not react to it, and understanding this helps me with my patience. Gosh, alcohol does a real number on the brain!!!!!!!!!!!!!!!!!!!!!!

3 restraints

2011-11-02T09:11:00.001-05:00

Akila has been having a difficult time the last few weeks. After going 7 weeks without needing to be restrained, she has needed to be restrained 3 times in the last 10 days or so. Her physical aggressions went like this:

Week 1:0
Week 2: 0
Week 3: 1
Week 4: 1
Week 5: 6
Week 6: 16
Week 7: 14
Week 8: 18
Week 9: 19

Around week 6, that is when a med change was made so that is why most people think the behaviors changed. I think that is a small part of it. Week 6 is when she started to feel comfortable with the situation. That is when she started to realize that she wasn't going to be coming home the next day. She still complains and wants to come home, but she knows that it won't happen until at least the next team meeting (team meetings are every 2 weeks).

She will be there until for sure Nov. 11, and possibly Nov. 29th. It is obvious to everyone that we need more time to work on the meds, and we also need to hire a PCA (it is pretty hard for a PCA to sit for 2 months with no hours, so the one I was hoping would have the most hours, can now only do one day a week). Email me if you're interested, or know someone else who would be.

Last night I brought Akila to dance. The transport of Akila is usually not fun. She has mainly been goofy on the ride back to the crisis home, which I can understand. The thought of returning there would make me anxious if I were her. Last night, she was goofy on the way to dance. I prefer it this way if we have to have some goofiness. She was babbling about how God would not be happy with Michael and I for keeping her at the crisis home. She was talking about how we always accuse her of doing things and said she never accuses us of doing things. "How do you think it would feel to be accused all the time," she cried. Eventually I stopped communicating with her. She was making no sense. This made her mad.

Eventually, she quieted down and after about 5 minutes of silence, apologized. She has been better at doing that lately. I hope that continues when she returns home. Being the skeptical mom who has been burnt so many times, it is hard to know if it is really genuine. I think she wants to come home so bad that she is thinking about that when she apologizes. But this is a huge step for her. Often, she is not able to think ahead like that.

On a really positive note, Friday is the end of the quarter and Akila is doing really well in school. She has 2 A's , 3 B's and 1 C-. I'm sure there might be some change by Friday, but that is what the online site says right now. That is amazing. I am very proud of her and told her so last night. She is very proud of herself also, as she should be!!!

Training

2011-11-02T08:47:00.004-05:00

I have been swamped the last week and I'm sure that you are all just dying with my absence. NOT! I did a training yesterday at Pathways Counseling Center for the adult forensics staff, the staff who work with adults, and mainly adult offenders. It went really well, but it was a challenging one for me. I'll tell you why.

These staff have already received FASD training and have a solid foundation of knowledge on FASD. This is due to the fact that the director of their program, Jerrod Brown, really gets it. Jerrod is the man who is pulling the Adult FASD Provider Network, he also has a Forensics Institute which is hosting the "Legal Aspects of FASD" training that I mentioned here. I believe you can still register and get 1/2 off if you give my name. The training is being done by a judge from Washington state.

Jerrod wanted the training I did yesterday to be on the FASD Family Impact. Sounds easy, right? I was tempted to just sit and tell endless stories of the craziness that Akila brings to our family, that would have taken way more than an hour though. But he wanted me to focus on things like domestic violence, child abuse and the potential connection to FASD. So I had to look at it from a different view, from the aspect that alcohol effected people can get into lots of trouble with the law, and how that impacts the family.

I had to use research of course, instead of just basing it on my gut. This is where the great challenge lied. There is not much research at all that I could find on FASD and domestic violence for example, so I had to make connections in a round about way. I found the "profile of an abuser", and showed the similarities between FASD behaviors. The hard thing about it all, is that when you are looking at things like this, it does not make individuals with FASD look very good. But the cold hard truth, is that we know that prisons are full of individuals with FASD. It is estimated that 60% of the prison population was prenatally exposed to alcohol.

While putting the presentation together, I struggled with this. But the good thing, is that these staff are caring and compassionate and are trying to help people, and they realize that a ton of the people they are dealing with are undiagnosed FASD. Again, the training went really well, and I feel good about the outcome. The one thing I would change, is that I needed to close with some more positive things about individuals with FASD but I ran out of time and spaced it out.

I basically spent about 5 nights in a row working til 1:00 am putting it together. I have done so many trainings in my life, but this was a new one for me. The basic and advanced trainings on FASD I have been doing, are all put together by MOFAS. I haven't had to put the powerpoints together, or do the research. Before I was doing it through MOFAS, I have done some other trainings on FASD, but they were much easier to put together. All of the trainings I have done in the youth work field, have also been much easier for me. I can put together a team building training in an hour. A youth leadership one also, but this was a bit harder. Especially due to the lack of research.

I found research on Autism and divorce. Down's Syndrome and divorce. Nothing on FASD and divorce. I found info on Down's Syndrome and how it effects siblings. Nothing on FASD and siblings. So I used some of this other type of research, and made the connections. I sure hope that there is a bunch of research currently underway on different aspects of FASD, as it is amazing how little is out there.

Adult FASD Provider Network

2011-10-29T09:53:00.003-05:00

There is good stuff going on behind the scenes in the FASD world. I was at a meeting yesterday that is a group of people called the Adult FASD Provider Network that a man has organized. There were people from the Hennepin County Public Defenders office, Ramsey County, several social service organizations who work with adults in treatment and counseling roles, MOFAS, and parents. If you have some ideas of other organizations or people who could sit at the table, let me know.

The group is going to try to address some issues that adults with FASD face, like the major lack of diagnostic clinics, transition issues, facilitate training for service providers, networking opportunities for providers, develop a screening that providers can use and several other areas. It was a great meeting, full of people who are passionate about FASD and the people who are impacted by it.

Why am I on it? Because in less than 6 years, Akila will be a legal adult, and that scares the crap out of me. It is hard enough to get her services as a child with brain damage and issues, let alone when she is a legal adult who looks totally "normal", but is still making dumb mistakes.

I am very thankful that there are some people who are working on organizing things like this since there is such a need.

Abstract vs. concrete

2011-10-28T14:31:00.003-05:00

I picked Akila up from an after school program yesterday so I could get her to the crisis home earlier than normal. They were having their Halloween party at the metro office and Akila wanted to go. She was in a good mood, happy to see me. We were walking down the hall and she showed me she had a big piece of tag board and said she needed to work on a project for tomorrow. I said, "Oh, you have homework, cool. You can work on it after the Halloween party." She very angrily yelled at me "I don't have homework STUPID, I have a project!!!" I said calmly, "Oh cool, you have a project." She then called me an idiot and several other names, had a horrible scowl on her face, and was mad the rest of the time I was with her.

I wasn't bothered that she was upset that I used the term homework and she was stuck on a project, not knowing that if she is working on the project at home it then falls under the umbrella of homework. We work hard to try not to use abstract concepts with Akila as we know that these kind of terms are hard for FASD kids to understand and that they can get stuck on an abstract term. I did ask her to try again and told her a better way of letting me know it was a project was to say CALMLY, "No mom, it is a project not homework." I told her that this would have helped me to better understand what I had said that was wrong instead of yelling and calling names. She just got more mad and called me more names, I will not type them.

The entire ride to the crisis home, she was whining/sobbing/complaining. What is a bummer, is that this is just how she was all summer, it is like she is mad at the world. Nothing makes her happy. She will find the piddliest thing to obsess on and be mad about. I think the honeymoon is over at the crisis home. This is partly a med thing, but it is more her being comfortable and letting it all out.

It is a bummer. A few weeks ago, I was looking forward hanging out with her as she was so enjoyable. Not anymore. She is now whining and complaining the whole time. When she calls, 75% of the time all she does is complain and whine. It is so nice to just be able to hang up when she gets rude and elevated on the phone, a nice aspect of this bit of respite.

Today, I picked her up from school to go to a Dr. appt. In the van, before she got to her state of anger, she was telling me that she saw Zeke at school today. She was actually very cute, saying that he is a "precious brother" and talking about her love for him. Then she was calling him her little tootsie roll because he is brown like a tootsie roll. Very cute, for a few minutes. Then the anger came. We are increasing her new med to see if it helps at all. I am hopeful, but have my eyes wide open.

Taxi problems

2011-10-26T17:00:00.002-05:00

School transportation for Akila to the crisis home, has been a challenge. The only option we have basically been given is to have Akila taken to and from school in a taxi so this is what has been happening. Last night Akila was complaining to me (which is about all she does lately) about the taxi driver telling her to shut up. I asked her what she had done or said beforehand; she said nothing. I said she had to have been saying something for him to tell her to shut up. She then said she was talking to herself. I asked her what she was saying to herself. She was quiet, then said she was just talking about school.

FASD kiddos take things so literally. She may have been talking to herself, but was telling herself that the taxi driver was an ugly stupid idiot or something like that. I could tell by the fact that it took her time to answer me, that she wasn't being truthful. Well lo and behold, this morning I got a call and an email that the taxi company is complaining about Akila and that she has been not putting her seat belt on, or taking it off while they drive and being rude to the drivers. The behavior specialist had Akila in his office.

I got on the phone with her and told her that she is to put her seat belt on right away, get a book out, and read it during the ride and to remain quiet. She agreed, but that in no way means she will do it. Maybe the taxi driver should do a reward chart, I should mention that idea!!! ;)

Reward charts

2011-10-26T16:28:00.002-05:00

I was at a meeting today in our county and it was full of FASD interested people. There was an expert panel on the topic, there were probably 30ish people there and 4-5 parents. The experts were talking about reward charts, putting marbles in a jar and you get an ice cream cone was an example.

One parent shared her experience with reward charts and the fact that they are not very effective in the homes, but work better in schools or programs. She went on for a little bit. The other parents and I were vehemently shaking our heads. I agreed and said that I want to throw up when a provider mentions doing a reward chart.

I also shared that when Akila was in 1st, 2nd, even 3rd grade, we had more success with the reward chart, but now it is not at all effective. All of the parents totally agreed, it was an interesting moment, one that felt good. Not because we were telling the experts off. Not because we are right and they are wrong. Not because I think the experts ideas are dumb or invaluable. But because we ALL agreed and had the same experience.

So many times, you wonder if you are the only one feeling a certain way, or if you are the only one willing to at least vocalize something. It was affirming to hear from other parents, who I have never met or spoken with before, that they have had the same experience. Sometimes I wonder if I am just being lazy. Truth is, reward charts take time, especially some of them. But, I do know that if they worked, I would take the time and do them!

It is like a friend I have who swears that when she gets calcium/magnesium tablets into her challenging son, he behaves perfectly. But she can't seem to remember to get it into him throughout the day (she says she needs to give it to him every 4 hrs or so). Well I can guarantee, if these tablets improved Akila's behavior, I would have a digital watch set every 4 hours and she would get those tablets. It is like the meds that she is on. I know they help her behaviors, and we are militant about getting them into her.

There is great relief when hanging out with other parents with the same experiences, or even similar experiences. It was great to be on the same page with them regarding reward charts!

Ups & downs

2011-10-23T20:41:00.003-05:00

Akila has had a week of ups and downs. The week started out really rough with the restraint and putting a gash on a staff person's head. On the phone, she was pretty whiney but I think was fairly mellow the rest of the week, but I'm not sure. I took her to an appt at our clinic for some immunizations and we went to a movie after on Friday. My 16 year old niece came with as she stayed with us over MEA (which was really fun!). She was in a good mood and was fun to be with.

This morning, we were picking her up at 10:15 to go to church and lunch. She called when I was in the shower and it was another "urgent matter", and "emergency" according to her. She had Imani bring the phone into the bathroom. Michael ended up talking to her, and I did once I got out of the shower. The "emergency", was that the staff took her Halloween candy away from her. Alert the media!!!

Yesterday, the staff brought her to Como Zoo to a Halloween event and she got a bag of candy- this is what they took away from her. She was on fire about this!!!! Went on and on about how wrong it was that they did this, and I could not distract her. I told her it was good they took it from her, and tried to support the staff, but I always wonder what they think I am telling her as they sit there and listen to her trash on them.

I eventually had to hang up on her as she would not stop yelling, name calling, and just plain being angry. The phone rang right after I hung up and I thought about not answering it, but I did. She often calls right back. It was actually the staff person explaining why she took the candy away. I told her I supported her and was glad she took it.

When we went to pick up Akila, I could see her yelling and being rude to the staff. She was yelling at them to unlock the door. I heard the staff tell her they would not open the door until she stopped yelling. It took several minutes. I mean several. As I stood there waiting, I have to admit I was quite nervous about how church was going to go. Michael and I had said that before we left home even after we had been on the phone with her.

Amazingly, when she got in the van, she was transformed into a happy child. She completely forgot about the fact that they had taken her candy. Know why? Because they sent the candy with me. I gave it to her, and she then shared it with all the kids. If they had not sent the candy, she would have been on fire the entire time. Thankfully, when we dropped her off, she told me to keep the candy at home for her.

She was very well behaved the entire time with us, which was wonderful. She did call tonight, and was mumbling on the phone about her morning. She was telling me that the staff were writing things down about her when she was mad. She then actually got the notes and read them to me. I could not understand everything she said, but I did hear "kicking and biting".

She was very upset that they had taken notes as she knows that these kind of behaviors are part of the reason why she is still there. She told me that she is trying hard to make better decisions, but it is hard when people take her stuff. I told her that I would have taken the candy also and that she would have then kicked and bitten me, which is why we need a break from her. The hard thing about this, is that I can seriously handle it if it happens maybe once a day, or every couple of days. But it was happening at least 3 times a day and it had gotten very intense.

I did a training for Children's Home Society staff last week on FASD. The staff worked mainly in mental health with kids ages 3-18, school based and in day treatment. It went well, had lots of good questions. My old lady moment was when I recognized one of the staff people and thought that she was a daughter of one of my former colleagues. But no, she was one of my former students. Getting old.

I am also putting together a training in the next week on the impact that FASD has on a family and will be presenting it to some counselors who work a lot with the adult population, especially with adult offenders. If anybody has some thoughts or quotes they want to send me, feel free!!

One last thought, I will write on later this week hopefully. We got an OT evaluation done on Akila at the crisis home, and it has me kind of annoyed. It has several of those subtle parent blaming sentences strewn throughout the entire report. I feel a blog post brewing, but am too swamped with other work right now.

Restraint

2011-10-18T10:29:00.002-05:00

I just got a call that Akila was restrained last night after I left her, this is her first restraint. She has also been up since 3:30 am and hit a staff with a cup this morning and left a gash on their head. I am so grateful that we have professionals helping us right now, but have to say that inside I am so nervous for her return to our home in a few weeks.

It also feels very weird to know that my child is hurting others, leaving gashes and all. Please pray for her to calm down...

DD waiver info

2011-10-18T08:32:00.002-05:00

I am going to attend a community info meeting for Hennepin County tomorrow so I can better understand waivers, which is something we are trying to get Akila on. Here is the info in case anyone else needs to learn more:

Developmental Disabilities Waiver Overview

Developmental Disabilities (DD) Waiver services provide funds to teach life skills in the home and community. This training reviews the menu of services provided by a licensed or traditional service provider and outlines the similarities and differences. This session will also provide an overview of Consumer Directed Community Support (CDCS). We will also be discussing changes in non-licensed personal support services. Attendance is highly recommended if you are currently receiving DD Waiver services. If you are interested in more information on CDCS please call our coverage line at 612-596-6630.

Who Should Attend?
Parents, providers, legal representatives and persons with disabilities

Wednesday, October 19, 2011
3:00 PM to 5:00 PM

Champlin Library -
Meeting Room
12154 Ensign Avenue N
Champlin, MN 55316
612-543-6250 for directions

Register by calling 612-596-6631

"Urgent matter"

2011-10-18T08:12:00.004-05:00

On Sunday when we brought Akila to church, she had me feel her arm/elbow area and the dry skin that she has. She has always struggled with dry skin, and has always been horrible at putting on lotion, or letting me put lotion on. I told her that it was Eczema, which is really dry skin. I goofed, she is now obsessed with this. I have told her this many times in the past, but now she is obsessed.

After church and lunch, we stopped at Target to get her some hair grease and a few things she needed. We also bought some hydrocortizone for her dry skin. She called me Sunday evening and was furious because the staff had taken the hydrocortizone away. I forgot that they need a Dr. order for any OTC type of thing. I told her that I would email Dr. Mackey and have her send an order on Monday.

I picked her up from school yesterday to bring her to dance. She was obsessing on the fact that the staff took the cream away. I explained why, but she didn't care. She was mad. We got to dance early and I don't have a key to the new studio yet, so we ran over to Walgreens and bought some more hydrocotizone cream. She applied it as we drove to dance. I thought the issue was resolved, until we get the order from the dr. I was wrong.

On the way home from dance, she started to perseverate on the issue. She wanted me to go into the crisis home and talk to the staff. I told her that it didn't matter what I said until we have a dr. order, and that Dr. Mackey must have been out today. None of this mattered, because it is urgent. She was sobbing, and must have said this was a serious and urgent matter at least 30 times, I kid you not. And I don't care obviously because this is a very serious issue and I don't seem to understand it.

I kept my tongue in line, and did not point out that she has had this Eczema for YEARS and it has never been a serious issue to her. I also told her that she had already put the cream on, and that we could put a 2nd application on before we got back to the home. Then today, I would call the clinic and make sure we get the order. She wasn't listening, she was just stuck in being mad and none of my solutions mattered, I offered several others.

Before you knew it, she was saying, "You people are all retarded. No offense mom, but white people are all retarded. I don't mean to offend you, but you guys are all retarded." By this point, I had decided to not respond at all, and was driving in silence, which makes her go on and on even more- she hates the silent treatment. I will tell her that when she is ready to listen, I will talk, but there is no reason for me to engage and go back and forth with her when she is clearly unreasonable. I just sat there listening to the message of "urgency" and the name calling and was trying really hard not to laugh, but I did drive with a smile. Some of the things she says when she gets babbling, are pretty funny.

When we arrived at the home, she then started to obsess about wanting to take the box of crackers into the house. They don't want the kids to bring in outside food as it causes issues with the other consumers. She was mad about this now. I brought her into the house, confirmed with the staff that she could not use the cream until we had a dr. order, which I did only for her benefit. She was mad, and going off. Holding onto my arm and yelling crazy. She was standing in front of the door so I just told the staff to unlock it so I could go. She got really mad as I walked away from her tirade, and was starting to call me a mother effer as I walked out the door. It was so nice to be able to leave and walk away. As I backed out of the driveway, I could see her in the living room giving the two staff members a mouth full.

It was very sad, but also so nice to be able to drive away. Only a few more weeks left of this respite, I need to finish getting a few things done around the house, but more importantly, I need to make sure I am refreshed and ready to handle these kind of "urgent matters".

Professionals

2011-10-15T09:44:00.003-05:00

We met with a practitioner from an in-home therapy place on Wednesday with Akila, we had the meeting at school. We are desperate to find things that will help Akila and us when she comes home, to help things work so we don't end up in a bad place again. But I have to admit, and I'm not suppose to feel like this, and I'm certainly not suppose to admit it publicly, I am skeptical. Here is why...

We have done counseling/therapy with Akila in the past, and it has not helped. Generally, when you are seeking professional help, there is a reason. The reason usually is that you are in over your head, you are trying to keep your head above water when things are really rough, and you're trying to find someone who knows more than you about the problem; this is why they are called the professional, right? Well the main problem with this strategy which works really well in the majority of situations, is that it is nearly impossible to find a professional who knows more than I do about FASD. I am not saying that to sound conceited.

Usually, when you take your child to a medical doctor looking for answers, they know more about the problem than you. Zeke has been diagnosed with Chronic Hives recently. This annoying diagnosis, has been the root of the joint pain, hives, angieodema and other issues he has been having more several months. I know nothing about Chronic Hives. I have been reading up on them, and trying to, but his doctors know way more than I do about them even after I have been reading for a few months. Do they know Zeke better than I do? NO. I am a very important piece to his treatment as I know all the details about him, but I do not know more about Chronic Hives than his docs do.

I have yet to find a professional who knows more about FASD than I do, and I am not talking about my personal experience of living with FASD, which is very valuable and important as well. But I mean from an academic perspective, or knowledge perspective. I have read practically every book on FASD, even one or two which were very medical based and hard for me to understand and took me 3 times as long to read. I have been to multiple conferences and workshops on FASD. I have been told by MD's that FASD was barely skimmed when they were in med school, and for the majority of MD's, only Fetal Alcohol Syndrome (FAS) was covered, not the more dangerous and common Alcohol Related Neurodevelopmental Disorder(ARND).

A few years ago when Akila was going to a highly recommended Psychologist, I asked him if he had much experience or knowledge of FASD. He said yes, he understood it. I should have dug more before we waisted our time and money. He obviously did not understand it, or have much experience with it. He developed a very confusing (for me even) reward behavior chart (otherwise known affectionately to many of us as a sticker chart, or "stupid sticker chart" in my book). I can't remember all the details of it as I have tried to repress it, but it was something like Akila had to rate her behavior at the end of the day in a couple of categories from 1-5 and so did we, and then we had to compare our ratings, and if she was within 5 points of where we rated her, she received a sticker. At the end of the week, if she had 4 stickers, she earned a certain thing, 5 stickers a different thing of higher value, and so on. We were both confused. Needless to say, it did not work.

During these sessions with him, he also was convinced that we should be doing the typical time out system. I explained that it is well known by FASD experts that time outs are not very effective with the FASD brain. He disagreed. During one session, he tried to get Akila to take a time out when she had been rude. It was not working well. The timer could not start until she stopped talking. Finally, he had me going out into the hallway and coming back in, in order to get her to take her time out. I went back and forth a million times, feeling like an idiot as people were passing me. I was sweating by the end of the ordeal, and after over 45 minutes, he got her to take a silent 2 minute time out. He was very proud of himself and said we should be doing them at home, and that it would just take several attempts like he just did to get her to do them consistently. We never went back.

So, I was skeptical when meeting on Wednesday with our latest therapist. I still am, but there was one great thing that happened. She was personable and easy to get along with. But the thing that I felt was refreshing, was that she admitted that we knew more about FASD than she does. She admitted that she is not sure how she is going to approach this situation. Wow, a practitioner who is not full of them self and sure that they can fix all the problems. I find that this is half of the battle. Don't get me wrong, I would prefer a professional who knows more about FASD, has had tons of training in it, and just flat out "gets it". I have really only heard of one of these people in the Twin Cities though, and I don't think she is the type of person who works 1:1 with the child each week.

I have found a Psychiatrist who gets FASD, and I highly recommend her. Dr. Elizabeth Reeve with Health Partners. My friends and I have been clogging up her schedule lately. This is why I tell almost every young person that I know who is majoring in counseling, psychology or something like this, to specialize in FASD- there is a mint to be made. But more importantly, there are a ton of families like ours who are desperate to find pro's who "get it". We had a PCA who is getting her PhD in Psychology and I was hoping she would specialize in FASD, she even tried to get her internship to be at the U of M FASD clinic, but they were too slow in getting back to her. After working 1:1 with Akila, she really gets it. But I think she has realized that her area of interest might be with children, even though she was great with Akila.

So my skepticism with this newest practitioner, strike that, with this new series of therapy, doesn't have so much to do with this individual practitioner. It is more about the system. The fact that we keep training, educating and sending professionals out there who have no clue about FASD, or very few clues. I really liked this woman, I hope she is able to help out. But the fact of the matter, is that Akila will still have brain damage in the end, this part is not fixable or reversible. And if we can have someone working with her who understands this, it is half of the battle.

Meds and extension

2011-10-13T22:04:00.003-05:00

We did some med changes with Akila this week, and it did not go well. She has been off of Risperidone all week and she has been bouncing off the walls. We had to taper her off the med so we can try a different one, and it has been helpful to me to see that the meds do make a difference. By the end of the summer with the horrible behavior we were having, I was wondering if the meds were even phasing her. I know now that they have been.

The crisis home has noticed a big difference in her behaviors. They chart behaviors, and she has basically doubled in physical and verbal aggression in the last week compared to the previous week. And school, that has been really hard. Her aide has been communicating with me daily saying she is on fire, and just being awful. She is starting the new med tomorrow, and it isn't soon enough!

I did have her on Monday and Tuesday evening, when I brought her to dance class. I work at the studio, and we started later this year as we moved to a new location and have been in the midst of construction. Partly why I have been absent from blogging this week (and I was out of town last weekend). I noticed a huge difference in her behavior on those two evenings also.

Her stay at the crisis home has been extended, which I am really relieved about. Having her at the crisis home, feels crappy, yet the idea of her coming home doesn't feel right either. She will be coming home, but we need longer to work on the meds so I am so grateful that her stay has been extended. When I was talking to the crisis home manager yesterday, and reporting what the school has been dealing with, she told me about how horrible Akila has also been a the home. I told her that this made me very nervous with the possibility of Akila coming home this Saturday when she is extremely dysregulated. She then called one of the people working on that decision and then called back saying we had the extension. Phewwww.

Another thing that I have noticed while her meds have been different this week, is she has even less filters than normal. At the dance studio, I was sitting next to her. She pointed to a scar that is on my hand from a deep scratch she gave me this summer. She said, with kind of an evil smile, I feel really bad about that. It was creepy. She was smiling while she said it. Then she was telling a dance mom that I was talking to that her blonde hair is really dark, darker than mine. Then she started telling her just her roots were dark. Embarrassing! Another dance mom was asking her how school was going, she said "good, but I have had a huge attitude with my para". A month ago, she would have just said good. Not that she has good filters when on meds, but they are better than they are now.

Obviously, the filter issue isn't the reason we do medications. The fact that she had 6 episodes of physical aggression last week, and 27 this week, is why we do. She had 15 episodes of verbal aggression last week, and 27 this week. And this is a lot less than at home, due to the comfort level of Akila, and the less structured environment. This is part of the reason why we medicate, and it isn't even including all of the benefits to how much better she learns when properly medicated.

IEP meeting

2011-10-06T22:19:00.002-05:00

We had Akila's IEP meeting this year. Here entire team is new except her 1:1 aide and the associate principal, who only stays for a few minutes. Her special ed teacher, school psychologist and 4 core academic teachers are all new. This is cool, it just means putting in some extra time to get to know a new group of people.

The meeting went really well, and I am so grateful for that. I have so many friends who have nightmare stories from IEP meetings and the fallout after the meeting. Akila has a really great team and people who are willing to figure her out, work with her, and cheer her on. I think I wrote about this but I'm too tired to look back, but I think that Akila has been treating her aide very poorly the last month since doesn't have the opportunity to be rude to us while she stays at the crisis home. Her special ed teacher has seen some of her attitude, but she has hidden it from the main teachers.

As a matter of fact, the teachers all had great things to say about how hard Akila has been working and how she has been pretty focused. They have done some testing in the last 2 weeks and her lexile reading scores went up and are around 627, which is an improvement. Her math testing stayed the same as last spring which is awesome that she didn't regress. I am really happy that she is working hard and doing well, but I am also cautious. She has a pattern of around November each year, starting to decline and lose interest. That is when she starts to feel comfortable with the new teacher(s) and the kids in her classes.

I remember last year, at the October conferences (which are next week), her teacher saying that she was doing great and she had very few issues. Then at the March conferences, she was talking about how much she was struggling with Akila's behaviors and being so mean to other kids. That is pretty typical, I hear how great she is at the beginning of the year, and then after January I hear a little different tune. Oh how I wish she could continue with the academic start that she has so far, I will be praying for that.

There is a new "consumer" at the crisis home- that is what they call them. Evidently, Akila doesn't like him after two days. This morning, she was trying to go after the kid and attack him. This kid is 16 and has been described to me by Akila and a staff person, as being very large. Another typical FASD thing, they have no sense of who they could even take on. This kid could crush her. She has been taking a taxi to school, and the staff had a hard time getting her into the taxi she was so worked up about this boy and wanting to go after him.

She called me after school and I asked how her day was. She said "Good. Well, kind of good". I asked why it was kind of good. She said she had a bad morning at the house. I asked why. She started in a tirade about this boy and how she doesn't like him and he keeps getting in her business and she is going to smack him right in the face and on and on she went. All the while, using her ghetto talk attitude voice. I had the feeling that the boy was within ear shot of her and I was trying to distract her to a different topic so she didn't antagonize him and get him to come and attack her. She wanted to keep going on though. She said he said something about me!!!! I said I didn't care and to just ignore it.

The staff said that Akila was the one being mean to him and starting the whole thing, which I can see happening. They might have their hands full with this combo, like they weren't already full.

I DON'T HAVE ANYTHING TO WEAR!

2011-10-05T08:30:00.005-05:00

I was just posting recently about how easy our mornings are around here while Akila is at the crisis home. When she is home, we get up 1 hour before school- it is best not to be in a rush with her, or the rush causes all kinds of issues. I have been waking up the kids about 20 minutes before the first bus leaves and it has been really smooth.

As I was walking home from the bus stop around the corner this morning, I was thinking about how the mornings will be much "ickier" when Akila returns home. Some of you know exactly what I'm talking about. For those of you who don't, let me just say that it sucks. When she finally leaves for school, most mornings I have been called umpteen different nasty names, heard a ton of other foul language, possibly (usually) been kicked or hit a few times, had to try to get her to stop calling her siblings names and comforted her siblings, and had an epic fight to get her meds in her. When she gets on the bus and I get in the house and close the door, many mornings I feel like crying, but most often I just feel numb. It is not a fun way to start the day. Most mornings, this is when I go to the Word and spend some time in it.

One of my friends who has a teenager with FASD, recently received the following text from their daughter in the morning before she left for school: "I DON'T WANT TO GO TO SCHOOL. I HATE MY LIFE. I HATE EVERYONE AT SCHOOL. I'M RETARDED. IT'S TOO HARD. I DON'T HAVE ANYTHING TO WEAR. I HATE MY LIFE." It sounds like it was not a fun morning, the teenager was still yelling as she went out the door.

Often people who do not understand FASD ask me if it gets easier as the child gets older. My answer to this is always "NO!!!!!!!!!!!!!" It only gets harder. I think back to when Akila was 3, or 5 or 7 even- those were the good ol' days. When Akila is having good moments, like now when we visit her at the crisis home, it is like we are seeing the old Akila that we were able to enjoy so much more. Yes, she had issues back then, but the issues were not violent, did not include swearing, and the intensity level was lower, much lower. The majority of people don't understand this, they think that as a child gets older and more "mature", they should be able to control their emotions better.

This is where they do not understand how FASD impact the brain. Akila for example, is developmentally in most areas, closer to a 6 year old. Her body is that of a 12 year old (kind of, it is a bit complicated due to her Turner Syndrome diagnosis also), and she is surrounded by 12 year olds at school and is expected to act like a 12 year old. Now, yes, I agree, 12 year olds are generally stupid. I say that with much love and a degree in Youth Studies and years of experience working with middle and high school kids. I love teenagers, they have been my life passion professionally. But let's face it, they are dumb.

There is research showing how when kids hit the middle school years, they turn into dorks. That is exactly what the research says, dorks. Ha, not. But you know what I mean. Their bodies are going through tons of changes and they don't understand them. Imani who is 11, has always been the most sweet and mellow child. Well in the last 4 months or so, she is having these crazy fits of explosive anger. I thought it might be due to the stress of living with Akila, and on some level I still think it is. But I am really starting to think that it is due more to the hormones that are raging in her body and making her wacko.

FASD kids have a hard time when they hit the upper elementary, middle school/high school years. Learning becomes more abstract which they struggle with usually. Their learning disabilities become more apparent and they start to feel not as smart as their friends (if they have friends). Most special education programs in most schools, do a very poor job of understanding this. The kids are often called lazy, teachers think they are not putting enough effort into it, especially if they are not receiving much assistance. So far, Akila has done OK in this area, but I think it is mainly due to her excellent aide who helps her. Not all kids get a 1:1 aide though.

The text from my friend's child made me laugh, and it made me sad. The part that made me laugh, was the "I DON'T HAVE ANYTHING TO WEAR". This is classic FASD. She was going on about some real emotions, some real struggles. Feeling retarded, hating people at the school- these are serious issues.

I can sympathise with going to school and feeling retarded. I have always struggled with math, and I therefore have always hated it. With a passion. I was always in the lowest math group in school. Even in high school, I had to take the "stupid" level math class (that is what I called it back then)- and I struggled through it and barely passed. I still have math anxiety; I hate helping my kids with math homework, once they hit about 4th or 5th grade, I'm done.

I actually hate how they push complex and difficult math concepts on a kid with FASD. I actually believe strongly that when a kid with FASD, or a different learning disability that cripples the child, gets to a point with math (or a different subject for that matter), they should stop on the learning new concepts and just focus on the basics and reviewing that for several years. Seriously, algebra has done nothing for me except make me hate math with a passion- what good is it going to do Akila? These are often the breaking points for a lot of kids, when they start to hate school, start to skip classes or want to quit school all together. It can make their effect their entire school experience- often they start to do poorly in other subjects that they would be able to muddle through, but they are so caught up in hating school and how much their life sucks, that they stink in other subjects based on their attitude.

I know this does not apply to all FASD kids, but it does apply to a lot. I have been focusing on math, and this is probably because I HATE MATH. If I had a cell phone in high school, I probably would have sent the same text to my mom. And I really think that I probably am FASD as I know my mom drank while pregnant with me. Seriously, it could easily be why I stink at math.

I wouldn't have sent the part about "I HAVE NOTHING TO WEAR" though as I would have been smart enough to know that a sentence like that just took away some of my credibility. Like I said, when I read the text, I laughed about that line. Partly because humor is what gets me through this life, no doubt. It is like an Electric Company or Sesame Street (can't remember which show) skit on which one of these does not fit with the other. This is a young woman who has tons of great clothes, but nothing is ever enough. Another classic FASD thing; Akila is never satisfied. On the day of her birthday party, she received a ton of great gifts, but still threw a fit over wanting to go to the store and buy another doll (she had received 3 as gifts). I know another parent who is in the midst of bankruptcy and a big part of the reason, is that she would never say no to her FASD kiddo and bought them everything to avoid rages.

One of the really hard things when you have a kid with FASD, is to be able to see through all the crap and be able to figure out when you really need to step in and advocate. This is due to the fact that our kids are almost constantly in turmoil. When do we know if it is just them being a drama queen, or if they are at the point where they really need help. I'm not at all saying this about my friend who's daughter sent this text, but I am being more general.

It is exhausting dealing with all the drama, there is no way as a parent that we could sit every time our kids say they hate their life, and have a deep in-depth conversation with them about it. It is the boy who cried wolf syndrome. Our challenge as parents, is to figure out, when we need to step in. Is there something we could do that could make their life easier? Because I'm telling you, their life is not easy. I am always writing about how hard this is for me, or for Michael.

But can you imagine how hard their life is? Akila has no friends, and her siblings can't stand to play with her very often. She goes through the school day confused, lives in a constant state of anger and agitation. It has got to be hard. Right now, Akila genuinely believes that when she comes home, she will not return to her old violent behaviors. She can't understand why she can't come home yet. This must be confusing for her. Her life is infinitely more difficult than mine is, and her future is a rough one. But there are times when we as parents need to step in, see what changes we can make or advocate for, and see if it can make their life easier and thus ours as well.

I pray for this often in my own life. Lord, give me the strength and foresight to know when to make decisions for Akila; when to keep her home from school for a day and spend time bonding with her, when to turn into mama bear at a school meeting and buck the system, when to fight to so she is able to attend Bible Camp, when to start her on birth control, when (and if) to start legal guardianship papers for when she is becoming an adult, when to pull her from a class that she should not be in and I know this in my heart, when to fight with the county and other agencies to get her the services she needs to be successful.

It can sometimes feel like all I am doing is fighting, maybe the right word is advocating, but it feels like fighting. Fighting with the county, the school, the state, with Akila, and way too often, with my trust in the Lord. He knows Akila, he knows her needs, her issues. He knows her heart and He loves her dearly, and He loves me as well. I must focus on this more often.

Legal Aspects of FASD's Training

2011-10-03T20:52:00.004-05:00

I have made a new friend and his name is Jerrod Brown. He has started up an organization called the American Institute for Advancement of Forensic Studies and he is interested in FASD as it relates to forensics. He is also working on starting up a clinic called the FASD Clinic of Minnesota, and he gets FASD. His AIAFS group has several trainings upcoming, but one that many of you might be interested in is titled the Legal Aspects of FASD's, and Judge Tony Wartnik from Washington State will be coming into town to lead it.

The training is in January and I am going. I'm not sure if you are able to see the above flyer, but if you are interested in it, email me and I will send it to you with the registration form. If you write on it that I referred you, you will get 50% off- what a deal!!! Hope to see you all in January!

Record breaking day

2011-10-03T00:30:00.002-05:00

We took Akila to church today. Life is very strange. She has been gone for 4 weeks, but will probably be coming home in a few weeks. It doesn't feel normal, or good to have her gone. I can't imagine if someday we get to the point of having her in long term placement out of the home, that will be very strange.

But, I am struck at how much we have been able to enjoy her the past 4 weeks. When we are with her, she is so enjoyable, it is almost like the "old" Akila, the one we remember from before her raging days. This is what makes me think that if we do get to a place of out of home placement, it will in many ways be good for our relationship. That sounds strange. But this is a strange way to live, nothing normal about it. You all know that, whether you are living lives with challenging kids or not. It is very obvious that our life is strange!!

It is so nice to spend 5 hours with her, and see her smiling, happy and not getting into her horrible moods. This isn't to say that it is without hitches, but they are very minimal. Over a week ago, she was perseverating on the stupid fake fingernails that I hate. Haven't heard about them all week, thought we were home free. Then we picked her up, and she had some type of flyer with her. Before we could pull out of the driveway, she was showing us a coupon for $1 off of fake fingernails. I almost threw up.

She was asking if she could get some as they would only be $4.99 with the coupon. I said we weren't going to talk about it. I just want to break her of this obsession!!! This obsession has caused so many issues, so many rages, so many bruises. We have bought them on and off over the years, and it is never enough. You get them for her one day as a reward for good behavior, and by the end of that day, she wants to go back to the store because a few of them fell off and broke, or won't stay on and she needs new ones. I have fallen for it too many times. Yes, it will help her to be quiet, for about 30 minutes. And then she has some other idea of something we should buy for her. It does not stop if you buy the fake fingernails. Many people don't get that. they keep saying, "just buy her the fingernails!"

She won't take no for an answer. We said that a few times before we were even a block away. Then I finally said we weren't going to talk about it now, as I wanted to enjoy her and see how her morning was. We tried to distract her and talk about other things. Five minutes later, she brought them up again. She brought it up at least 10 times during the church service. I kept telling her "later", we will talk about it later. We got into the car in the church parking lot, and she asked immediately.

We told her no, we wouldn't be buying them. Why, is her question of course. We gave her several reasons, but she kept going on. And on. And on. Undoubtedly, if we were home, and not in the crisis home situation, she would have been swearing, and hitting eventually over this obsession. More than likely, we will be back in this situation in a few weeks. I am a realist.

We went out to lunch, and then to a park. It was a gorgeous day, and we had a nice time. Again, it is so nice to be able to spend time with her that is not tense, that does not end in her hitting us and totally losing it. There was no swearing, no hitting, no raging, no restraining. This is the longest we have gone in at least 5 years without her getting physically and verbally aggressive. What a great record to break.

Team meeting

2011-09-28T21:25:00.002-05:00

We have a team meeting tomorrow at the crisis home. We tell Akila this is when we talk about how she is doing and when she might come home. This translates to her mind that she is coming home after the meeting and has been telling me for two weeks (since the last team meeting) to tell everyone that she is ready to come home. I just tell her that I will tell the team that is what SHE thinks- you know, she has learned her lesson after all.

This morning, her aide at school called to tell me that she has been really horrible and by 10:30, she had pulled her out of class twice to talk about her attitude. She said it had been really bad and wondered if we should call the crisis home and have them come and get her. I asked to talk to her. I then proceeded to tell her that it was obvious to me that she had not learned her lesson if she was being this rude at school and showing so much attitude. She of course disagreed and said she would clean up her act.

Michael and I were just about to leave to go have lunch with her. We did, and then talked with the aide some more. She said that Akila has been really horrible so far this year, especially the last two weeks. I told her that I think she is getting more "crap" from Akila because Akila is most comfortable with her. She doesn't have us to beat on, verbally or physically, so she is letting it out on the aide (who has been working with her for 3 years). I told her I was really sorry, but thankfully she understands that we don't have much control of the little twirp. Yuck.

When she called this evening, she was once again telling me that she is ready to come home tomorrow. I told her that she won't be as it is very clear to me that she has not learned her lesson based on her attitude at school. She disagreed, over and over. And over and over... She thinks that we should bring her home and she will then prove to us that she behave better. I told her that I would need to see the behavior first. She disagreed, over and over. And over and over.

Respite blessings

2011-09-27T11:02:00.002-05:00

Akila has been at the crisis home for 3 weeks. It feels strange, it feels good, it feels yucky, it feels... peaceful. I like it, and I don't like it. Lots of mixed feelings as I have blogged about several times.

I'm going to focus today on the blessings of this bit of respite, the things that I want to make sure I appreciate.

Unlocking. We have been able to keep the safe that stores knives and scissors open and unlocked, as well as the safe I keep in the bathroom with my make up and hairbrush.
Sleeping. Sleeping in 1/2 hour longer on school days, and having no hassles getting the kids ready and out the door.
Bedtime. Can't tell you how weird it is to just put the kids to bed and be done. It doesn't take an hour or longer. And I'm not totally stressed and feeling mentally and physically exhausted when finished.
Leaving. I went to a Twins baseball game last night with my brother Tony, who is in town from Virginia. I just left. No drama, no big deal. Mom went out for the evening, and I didn't have to worry about what was going on at home.
Date night. We took Zeke on his date night last week, and didn't have to get phone calls the entire time of chaos at home, and were able to come home and talk about it without drama.
Hygiene. When I tell a child to take a bath or shower, they do so with very little whining. We were having major issues with getting Akila to shower.
Organizing. I can clean out the hall closet or some other area without worrying about her seeing me doing it, and wanting everything she sees in the closet. I can take old clothing to donate at Goodwill without hiding it from her, or old toys.
Outside. Kids can play outside, play with neighbor kids, and there are no issues that I have to deal with every 5 minutes.
Games. We have actually been able to play some games with the kids, like Monopoly- without having meltdowns and game boards overturned or ruined.
Thinking. My brain has been able to take a rest. I feel like it is always in hyper-speed mode, thinking ahead, trying to avoid situations/rages/issues.
Enjoying. I have actually been able to enjoy Akila more than ever. When we have our visits with her, she is so happy to see us, that her behavior has been excellent. There has been the sadness and whining to come home, but that is to be expected. But it has been really nice to spend time with her without the constant issues and fights. It is almost like the beginning of a relationship, when you are dating someone new.
Siblings. The other 3 kids, although they miss Akila and want her to come home, have been able to play like "normal" kids, without fear of being hurt, without fear of doing something that would spur Akila to hurt mom or dad, without having to hide things from her. They have for 3 weeks played nicely, with only the typical sibling issues (don't want to make it sound like there are no fights or anything like that!).

These are a few of the tiny little things that have nice the past 3 weeks. Again, don't get me wrong, I truly miss Akila. But I can also tell that this "break" has been good for all 5 of us. We have been able to let our guard down, smell the fresh air, and breathe. As hard as this break has been, it has been good. God knew we were at the end of our rope, and He gave us a much needed break.

Nick & Suzanna's wedding

2011-09-26T10:43:00.017-05:00

Nick & Suzanna, the happy couple!

Me and my two older brothers, much older!!

We went to my nephew Nick's wedding on Saturday in the St. Cloud area. His new wife is Suzanna, and she is awesome, they make a great couple. The wedding was beautiful, and our whole family enjoyed it. My brother Tony who lives in Virgina flew in for the wedding, so it was nice to see both of my brothers.

Akila came with and was acted beautifully the entire time. She did become sad when it was getting close to time to go, and on the ride home. When we were saying goodbye to Tony, he mentioned that he is coming to stay with us on Monday, today. Akila then grabbed on to that and perseverated. She thinks she needs to come home from the crisis home so she can see uncle Tony, permanently. We listened to that the majority of the ride home.

She was once again telling me how she had learned her lesson, and that she wouldn't be mean anymore. I asked her how her behavior has been at the crisis home. She said good. I asked if she had kicked any of the staff. She said no. I know she kicked at least two different staff last week, and took a swing at another staff member's face, but had to stretch so far that she did not connect. She told me she has not kicked or tried to hit them. I said nothing in return. A few minutes later, she admitted to kicking one staff. But it was because she was mad and annoyed.

I reminded her that at home she would get mad and annoyed also. But she is convinced that she won't hit or hurt us anymore. I know that she truly thinks this, and this is what is heartbreaking. I can't tell you how much I wish she could come home now, and not be violent anymore. My heart desires this so much that it hurts.

Thankfully, she got out of the car without a scene and all in all, it was a super time with her. I am so glad we brought her with, as we debated if it would be a good idea and in the end, decided to take her with. She was facinated with the wedding. Moved to an aisle seat by herself in a different row so she could see and take it all in. Went through the receiving line 3 times as she was so obsessed with how beautiful Suzanna looked. It was sweet.

She also perseverated on the fact that she was not a bridesmaid and was not happy about this. We left the reception before the bride threw the bouquet, and this is good as she was convinced that she was going to fight tooth and nail to get it. We explained that it was for single women, over 18. She did not care. She wanted to sit at the head table with the bride and groom, and didn't understand that it doesn't work that way. We arrived at the reception before the wedding party, and of course she had to go and sit at the head table for awhile.

Holding the course

2011-09-22T21:19:00.003-05:00

On Tuesday night, Akila kicked a staff at the crisis home. Last night when I picked her up before we went to the hospital, she was very upset with a staff person and was yelling at him. The last 3 days, she has been obsessing again with the fake fingernails.

All this to say, I think we are close to her letting loose at the crisis home. What an odd feeling. I hate it- I wrote about it here a little over a week ago. I am having the mixed feelings of wanting her to rage for them, yet not.

She gets to call us 3 times a day. I may have to change this on school days. Three calls in an evening is too much, basically every hour. And she has nothing to say. I try to ask about her school day, what she ate, generic things like that. Her answer is almost always "nothing". She just wants to complain about something, mainly when she is coming home.

Of course, the last 3 days, it has been the fake fingernails. I told her the first two times she called, that if she didn't stop asking about the fake fingernails, that I was going to hang up. I had to hang up. She wants to make a compromise. She will never call again and cry to come home if we get her the fake fingernails. Right. I believe that. The hard thing, is that she is being sincere. She thinks she could really not call and cry to come home again. I know that she won't be able to control that.

The last few days on the phone, and seeing her last night, she seems a little more "back to normal", that is Akila's normal. Which is why I think she might be close to showing them the real her. She has been there for 3 weeks now, and it has been peaceful at home. I am over the initial horrid emotions but it still feels weird, yucky.

I have been enjoying the little things that we feel during this respite. It is nice to not have to lock up the knives. We can sleep in a little more because we don't have to deal with huge drama in the morning before school. Weekends, I can truly sleep in as Akila is my alarm clock. Bedtime is a breeze, wow I didn't know it could be so easy. It has been nice.

But a small part of me this week has been wanting to say, let's have her come home now. I know this is not a good idea, it is not the right time. I fully know that when she returns home, she will return to her "normal". I know it won't be good. I know that the Psychiatrist wants her to stay in the crisis home while we taper off meds and try new ones, so it is easier to measure how she is doing on the meds, without the "family factor". But I do miss her.

Perception

2011-09-22T08:13:00.001-05:00

A huge challenge with most FASD kids is lying. Some people think of clever things to call it instead of lying, kind of like not calling stealing, but saying something like they have "ownership issues" or something like that. Akila has always had issues with lying and she can tell some doozies.

Often they are very grandiose things like I have cancer, we were in a major car accident yesterday, we are flying to China to adopt 3 children next week, my sister died (never had a sister), etc. Sometimes the lies are on smaller topics, like we went to the Mall of America yesterday, or my mom bought me something that I didn't buy her, or little things like that. I will never forget a few years ago when I was going to an IEP meeting and beforehand, she was telling me to tell "that dude" that she really has 12 siblings and that we live in a 10 bedroom mansion. I had no idea who "that dude" was. At the meeting, I met the dude- he was the new school psychologist. I had forgotten about what she wanted me to tell him though (not that I would have gone along with her lie!). Throughout the meeting, I could feel him staring at me from time to time, it was very odd. Towards the end of the meeting, I was informing her new team of her issues with lying and gave them examples. I asked them to email me any lies she might say as we try to document them. He then said, "so you don't have 13 children and live in a 10 bedroom house?". I laughed and said no. He had bought right into her "creative stories", and was trying to get a grasp on me throughout the entire meeting.

But sometimes, an even bigger problem than Akila's outright lying, is her messed up perceptions. Another consumer at the house, said he was going to hit her, but never did. The threat was enough. In her mind, she thinks he hit her, she is convinced of this. She told staff, she told me. The staff are basically 1:1, and are very good at keeping things like this from happening. Last week, when she was trying to convince me that this other kid had hit her, as I pushed for more info, she basically admitted that all he had done was pull her coat. That, along with the threat, was enough for Akila to think that he had actually hit her.

Two nights ago, we were on the phone. I heard a staff person tell one of the kids to get away from Akila and give her some space while she was on the phone. The boy did touch Akila's arm. Akila's perception was that he pinched her. There was no mark, and the staff person was right there. Last night, she tried to tell me how this kid pinched her.

We have the same problem at home, especially during the rages and restraints. If our hands end up anywhere close to her neck while trying to get her into a restraint while she is attack mode, she is convinced that we have choked her. I have tried to explain what choking is to her, as we have never gotten close to choking her, but she is positive that we were "trying" to choke her. And she really believes this.

FASD kids are often known to have poor skills are reading social cues, and things like body language and stuff like that. This is very true of Akila. This deficit, tied together with her lying and messed up perception skills, is a pretty dangerous mix. This is what has lead to a ton of families and staff that work with FASD kids being falsely accused of wrongdoing. I know of several families who have been put through the ringer while their FASD kid has falsely accused them of some wrongdoing.

One of the things that is so sad about this, is that it makes it really hard to deal with and work with a FASD kid if there was true abuse. How could we believe Akila if something ever did really happen, without some kind of obvious proof? It is the boy who cried wolf syndrome. This is what makes our children so vulnerable, and so hard to protect.

I can easily see us in a situation in the future where Akila has wrongly accused us or someone else of doing something. I can only pray that it doesn't happen, and if it does, that it would all work out. This is why I recommend to any families out who are loving and raising kids like this, to document. Document. Document. Yes, it feels weird to have a file in my email inbox of the "lies" that school staff have sent me. It feels kind of weird to be gathering that info up on my daughter. But I am doing it in her best interest, our best interest, and for the best interest of all people who work with here really. Hopefully, I will never have to use this file.

Fake fingernail therapy

2011-09-20T21:21:00.005-05:00

Akila called three times this afternoon/evening. I might have to ask that they cut her calls from 3 to 2, on weekdays at least. I feel like I am on the phone with her every hour in the evening. The good thing is that she wasn't perseverating about coming home. She was back to an old obsession.

Fake fingernails....

Frankly, I was very relieved that there was a few miles in between us tonight on the phone- if there wasn't, no doubt she would have escalated and been hitting. I am going to go and visit her tomorrow evening. I will take her out to dinner, and she wanted to do something else. Getting fake fingernails at the nail salon was her brilliant idea. I calmly said no. And we went round and round like we have umpteen million times on this topic, my most favorite topic of all. She must have seen someone today with some pretty fake fingernails. God help me.

She wouldn't get off the topic, until I threatened that I was going to end the call if she brought them up again. She was trying to make a compromise. Hahahaha. No my darling, I will not compromise on these stupid things, which have been the instigation of at least 100 rages over the past 3 years. Have caused me many bruises, scratches, and headaches. I have compromised several times, and where did it get me? Right to rageville. No dear, mommy has learned her lesson. I know that you keep telling me you have learned your lesson, but my gut tells me otherwise. Sadly.

I could not think of something for us to do, that is free or inexpensive. It is suppose to be rainy and chilly, so a park is out of the question or something outdoors. Finally, I remembered that she has been begging me to go and see Elijah at the hospital again, so that is what we settled on. Perfect. I get to hang out with her, Elijah and Julie. Now I am looking forward to it even more.

I just pray that she doesn't bring up the fake fingernails. I need to do some deep breathing or anger control skills (the ones we have tried repeatedly to teach her) when I hear the term fake fingernails. I am pretty sure that if you hooked me up to some machines, you would see my blood pressure rise when the term is brought up. And I don't want to pass judgement on any of you who wear fake fingernails, but every time I see someone with them on, a little bit of vile comes up in my throat. I might need some therapy, I have issues with fake fingernails.

Sunday with Akila

2011-09-18T20:53:00.002-05:00

Akila went to church with us today. Michael has been fighting a bad cold so he stayed home. The kids and I picked her up and went to church. She was very good during church, leaning on my shoulder and holding my hand the entire time.

We went out for lunch after church, and other than a few issues with feet under the table, she was great. This is almost always an issue at a restaurant. If another child accidentally touches her foot from across the table, she goes nuts. Today, she asked nicely for Hezekiah to stop, the first two times. Then she got mad, but didn't lose it. She is just so happy to be with us that she is working hard to control herself.

On the way back to the crisis home, as we were getting close, she started to say that she didn't want to go back. I said I know, but it wasn't time to come home. A minute or so later Imani was crying and the boys were being brats and saying something snotty to her. I told them to be quiet and asked Imani what was the matter. She burst out crying saying that she didn't want Akila to go back to the crisis home. I said I knew it was hard, but is what we need to be doing right now. Akila leaned over and hugged her, and the two of them sat holding each other between the seats.

Now, here is what is kind of bizarre. A typical brained child, would have more than likely started to cry with Imani, and gotten as emotional if not more emotional than Imani. Not Akila. She was almost smiling, and feeling cheerful that her sister was crying. It reminded me of when our dog Hibeam died over a year ago and she was so intrigued by all of our tears and she just sat and watched us all cry. When we pulled up to the house, she comforted Imani and told her it would be OK and that she would see her next weekend. Obviously, this was sweet and loving, but also quite odd.

The emotions of this journey are really interesting. They hit us all at different times when we least expect it. I was at Walgreens picking up some stuff this evening and Akila called crying that she wants to come home. Not the easiest phone call to deal with in a store. I had to walk outside to talk with her. Next weekend my nephew is getting married in the St. Cloud area. We are going to take Akila with, although we thought about not taking her. It will be a good test to see how she does, how we all do.

Sovereignty of God in FASD

2011-09-17T18:39:00.006-05:00

I believe strongly in the sovereignty of God. Without this belief, I would be nothing. I believe with all my heart that things happen for a reason, and that God has a plan. I know that Akila was pre-destined to be my daughter and I her mother, and for this, I am eternally grateful. Grateful.

For it is through Akila, that I see my own sinful heart reflected daily. I am reminded of my weaknesses and my failure as a human constantly, and of God's forgiveness and the sacrifice of His son for my sins. Do I deserve this? NO!!!! Was that loud enough for you all? NO!!!!!!!!!!!!! NO!!!!!!!! Please, stop with the, "you are amazing and Akila is so fortunate or lucky to have you and you don't deserve this and there is a special place in heaven for you and does she know how fortunate she is to have you" and the list goes on and on and on and on and on and on and on and on and on and on and on...... you get the picture.

Let me say this loud and clear. Akila does not deserve the brain damage that has crippled her life. Please stop feeling pity for me, and feel compassion for her. Can you imagine how hard it is to be her? So many of my friends imagine how hard it is to be me. Don't get me wrong... I truly appreciate your caring and support. But really, Akila is the one who needs your support, prayers and love the most. She is the one who is so confused right now why she is living in a home without her family. She is the one wondering when her mom and dad are going to come and save her from this "terrifying place" (her words, it is a wonderful home, but it does have other children who are challenging, and I can understand how they could scare a child. Within a week or two, we expect her raging to start, and then she will be the "terrifying one").

Akila is the one who does not have any friends to sit with at lunch. She is the one who her own mother hates to shop with. She is the one who her siblings cringe when she comes home with the PCA. She is the one who her father tries not to show his dismay when she wakes up early in the morning. She is the one who has to sit in countless Dr. meetings and listen to all the "bad" things she has done over the past month or two. She is the one, who was innocently growing inside of a woman's womb, holding on for dear life as she had a chromosomal abnormality called Turner Syndrome which has nothing to do with her FASD diagnosis (1 out of 1,000 fetus's with this abnormality spontaneously abort- so she already was a fighter in the womb to the enth degree- 15% of all miscarriages are Turner Syndrome babies).

While she was battling this chromosomal challenge, she was also waging war against heroine and alcohol that her birth mom was consuming. Now, you might be getting angry and judging her birth mom. Be careful, that is a slippery slope. I pray daily for her birth mom. I know with all certainty in my heart that her birth mom was also FASD. She was married at 14, had a baby with her husband, had another baby with another man, went through alcohol treatment at 16, had two abortions, and then had Akila at age 19. That is quite a lot to do in a 5 year span, especially at those developmental ages. Both of her parents were alcoholics. It was a scheduled C-section, and she was positive for Heroine. The writing is on the wall. She had FASD. If Akila is fertile, which I pray she is not (another post), she will more than likely produce a FASD child(ren).

The instigator to me writing this post, is something somebody I am close to said. When I was informing this person about the crisis home situation recently, this person said, "Well, you threw your hat in the ring and drew the bad hat Barb". Translation: Akila is the bad hat. This hurts when I love her with all my heart and know that she is loved by the One who created her in His image.

This was a sucker punch. If this were someone I had great respect for and was on the same theological page with, it would have hit me to the core. It did not do that, but it did sting a bit. It annoyed me more than anything, and I moved one. But it has made me think about all fo the other comments about what an "angel" I am. And how I don't "deserve" this. Well, let me tell you this now. I am not an angel. And i do deserve this. I am a true sinner.

I believe that in many ways Akila is like the majority of us, but with out all the finesse of covering up our sins. She wears her sins on her sleeves, we hide ours under our facades. She has no facades, she says it like it is. She does not have the filters that the majority of use do, she says it like it is, curse words and all, gore and all. We all have a certain amount of evil in us, but we like to keep it under wraps, and hide it under our bible memorizing abilities, or our good deeds, or our home schooling, or our volunteering, or our hard work, or our committee work or .... the list goes on. Akila wears it on her sleeve. Her approach is kind of refreshing. At least we all know what to expect and we know what we are walking into, that is for sure.

I am really on a rampage here, aren't I??? I am about ready to get off of my soapbox. My point is, please don't think of Akila as a burden, or as an evil being. In so many ways, I think that you and I are probably more full of evil than she is. She is just a sweet innocent disabled girl who is doing the best she can with the tools that she was given. She has organic brain damage. She sometimes, and when at home, rages violently, often. But her family loves her dearly. And her God loves her even more so, as He has pre-destined her to be His, and to be a part of my family. And for that, I am so very thankful. I have learned more about God, about the Bible, about my husband and about myself through Akila than I ever have in my whole life. And for that, I am grateful.

Please don't be offended if you have ever called me an angel. Or told me there is a special place in heaven for me. Or many of the other statements I heard multiple times a week. Just know, that I prefer your energy to be spent on Akila. She is "the least of these" (Matthew 25:40). She needs your prayer, your support. We do also, but she really does. Especially now. When she is scared. Lonely. Confused. We appreciate and need your prayers as well.

Date night with Zeke

2011-09-17T08:34:00.002-05:00

We took Zeke out on his date night last night, it was a blast. You might remember the one we did with Hezekiah a few weeks ago was kind of rough- Akila was having a very difficult time at home with the PCA and was raging and we got several phone calls. We knew right away when Akila went into the crisis home that we should get Zeke's date night done while she was there, and probably Imani's also (we usually do them about twice a year, or just once, depending).

We had a great time with Zeke, even considering that Michael has a really bad cold. We went to Olive Garden and then bowling. He even got to play video games at the bowling alley, something we would never do if we had all of the kids. It was really fun- I just love spending this one-on-one time with the kids. They look forward to it all week, and I honestly think that Michael and I do more than they do.

We are going to take Akila to church with us tomorrow, which will be interesting. I didn't write about this yet. The first Sunday she was gone, she called when we were arriving at church. I told her I only had a few minutes because we were about to go into church. She got bummed out because she wanted to go to church. This is the girl who NEVER wants to go to church, and throws fits about it. Of course.

Then last Sunday morning, she called early and asked if she could go with us. I said no. After I got off the phone, it felt really weird. Yet, we are on respite. It was really refreshing to be able to worship without having to worry about her and the issues that she brings to worship. Wow, that is selfish. I prayed about it this week, and decided that we are going to give it a try this Sunday. Truthfully, she doesn't do too bad of a time in church. The biggest challenge, is her worrying about what the other 3 kids are doing and getting upset with them.

She will go to church with us, and then go out to lunch with us, which is kind of a tradition that we do each week. We haven't been doing it really the last month while Michael has been unemployed but it looks promising that should be changing really soon. He got a bite yesterday and it looks like an offer should be coming in early next week. Praying that the Lord works out the details in the offer, and we will be to normal. Oh wait, I guess not normal. Not sure if we will ever know normal again. Not sure if we have known normal for 12 years or so. But we will be back to business as usual, how about that? Either way, God is good and sustains us through all things.

Two weeks down

2011-09-14T22:06:00.002-05:00

We had the team meeting today for Akila at the crisis home, we meet every two weeks. I admitted to the ladies that I am hoping that Akila rages for their staff and that is a weird feeling. They got it. I am impressed with the staff at this facility, and for that, I am very thankful.

Akila has not raged yet, but has had several issues of verbal aggression and non-compliance. Last night, she had a 45 minute issue over not wanting to sleep in her room because of spiders. The program manager went through her entire room looking for spiders, showed her that there were none, read to her, rubbed her back, played the same game that I do many nights (although, often, I am doing it after she has been raging on and off for a few hours and I am mentally spent!). She said she really thought it might get physical. Akila did cry and sob on and off during the 45 minutes, and cried her self to sleep. She was perseverating on wanting to sleep in the TV room on the futon with the overnight staff (one staff is awake all night and one staff sleeps). Obviously not a choice.

After the team meeting, I picked Akila up for an appt. with her Psychiatrist to look at med changes. Akila was not happy as she had in her head that she might be coming home as we have been telling her that the team talks about that at our team meetings. I told her she isn't coming home and we will meet to talk about it again in two weeks. She was bummed. Then, at the Dr.'s office, she got annoyed. She never likes sitting there while we talk about her horrible behavior.

For the next 4 days, they are going to stop her ADHD meds and watch for behavior changes. And then next Monday, we will probably start to taper her off of her mood stabilizer. Once she is off of all of them, we will probably introduce some new ones. The Dr. said it is really nice to do this while not having the "family factor" in play. I totally agreed with her. As a matter of fact, we might be looking at extending her 45 day stay if we need more time to work on the meds.

After the appt, I was going to take Akila to finish her school shopping. We were driving right by the hospital where our friend Elijah and his mom Julie are staying, so we stopped by to see them. Akila has been asking about Elijah on the phone and has been sad that she could not visit him the last two weeks, so I was glad we could fit in a quick visit- and I could hang out with Julie every day and not run out of things to talk about!

Then we went shopping, and it went really smooth. Praise the Lord!!!! I was hoping we would not have a meltdown or close call like we did last weekend. The hardest part, was when it was time to go, walking to the car, Akila got really sad. Throughout the entire time I was with her tonight, she would on and off talk about how much she hates it at the crisis home and "stretch the truth" and say that a boy is choking and hitting her.

She told me this on the phone last night, that he had hit her. The program manager told me today that she was with Akila the entire day yesterday, from after school til bedtime and that the boy did not even touch Akila. He did a few days ago say that he was going to, but has not. But in Akila's mind, he said he was going to, so she now has it in her head that he has. I told her that she was stretching the truth, and she then said that he pulled her coat. Oh the slippery roads with these FASD kids and the false accusations. How can you ever trust them? It is a hard one, if there is ever a legitimate issue, it is probably going to be overlooked because of all of her lies. Sad.

The entire way home, which thankfully was short, she was sad, crying and upset. She did not want to go back there. When we got back, she said she was going to refuse to get out of the car. I told her that then I wouldn't be able to come back and visit often or be able to take her out on our visits. Thankfully, this worked and she got out.

Less than 30 minutes after I got home, she called sobbing. She has learned her lesson. I told her several times throughout the night that I can tell she hasn't by what her aide at school told me today. She has been showing a lot of attitude and rudeness at school. This is unusual for the first month or two of the school year. I am convinced this is not because of the current living situation. As a matter of fact, I think she would be worse at school if she were living at home right now. I told her that by the way she has been treating her aide, I can tell that she hasn't learned a lesson. So her new idea is that she is going to be nice to her aide for 2 days and then she can come home.

It is heartbreaking. I hate to see her sad, and I know it is confusing for her. I also know that if she were to come home today, we would be back to the same issues within a day or two. But oh boy does it pull at your heartstrings. It would almost be helpful if she were to call me a name or something. So now I am wishing for her to rage at the crisis home and call me names. Wow, I am a psycho mom!!!

Mommy therapy, cheap

2011-09-13T07:57:00.004-05:00

Yesterday was a great day. I did something I have wanted to do for at least 15 years. When I was in junior high, I bought a canoe with my babysitting money. In college, it was stolen. I loved canoeing, I always found it so peaceful and relaxing.

Before kids, a few times, Michael and I went canoeing down the St. Croix river and it was totally awesome- I especially love canoeing down rivers. But I have always wanted to kayak. I use to ask for kayaking lessons when we lived by Lake Nokomis as I use to see some group doing it there all the time. I don't know why, doesn't seem like you really need lessons, but it looked like fun. I asked for them for my birthday for years. Never got them. Poor me. :( haha.

A few weeks ago, I posted a status on Facebook asking if anyone has a kayak I could borrow. One friend said yes. On Sunday evening I texted her asking if I could use it yesterday and she agreed. Yesterday was a gorgeous day in Minnesota. I picked up the kayak, shoved it inside my minivan, drove it to Cedar Lake, and spent the day kayaking between the lakes- by MYSELF.

It was awesome. It was just what the Dr. ordered. It was just what I needed. It was a mental health day for mommy. I got nothing done, and I don't feel guilty about it. Even better, after bedtime, I went to the hospital and hung out with my Mad Mommy friends- icing on the cake. Got home after 1:30 am, and don't even care. Today is like my Monday this week.

I told Michael that when he gets a job, I would like to find a kayak on Craig's List by next summer I loved it so much. We could rent a spot at Cedar Lake which is where we swim all the time. Anybody want to go in on it with me? It could be a co-op kayak? haha. Not a bad idea! Great therapy, healthy, good for you, much cheaper than real therapy in the long run!

Disclaimer: I must admit, I can barely lift my arms today. Very sore. Will not be blow drying my hair, that is for sure!!!!

Odd place to be

2011-09-11T23:06:00.003-05:00

I hate the system. I hate FASD even more of course, but the system is a close 2nd place often. Akila has been at the crisis home for 12 days now, and my emotions are more stable. The first 4 or 5 days were very rough, very. It still feels yucky, don't get me wrong, but I am not a wreck on the brink of tears anymore, at least not today. Who knows what I'll be like tomorrow.

I feel so stuck between a rock and a hard place. Obviously, my prayer is that Akila would be healed, cured. Is this likely? Is this really what God's plan for her is? I am going to go out on a limb here and say no. I know there are a handful of you out there who are gasping for breath, stomping your feet and your knees have already hit the floor praying for my soul as you believe I am sinning by not believing in my Lord. You already know that I disagree with your theology. So once again, leave me alone. My point is, that more than likely, after these 45 days are up, Akila will return home and things will fairly quickly be right back to normal.

Do I sound pessimistic admitting that? You may think so. But if you had lived with her for the past several years, you would know that I am just being realistic. Being realistic is a survival tool in our house. I know there is a slim chance that she might be improved, and I would be the happiest mom in the world if so, but I'm not going to expect that.

The real odd thing that I want to write about today, is something that is going to sound horrible. I want my daughter to rage at the crisis home. There. I said it. I know that sounds crazy. But you know there is a reason why I call myself psycho mom!!! ;) No, really. I want the staff there to see and witness her troubling behaviors for several reasons. The biggest reason is so that they can try to help us, and give us their perspectives since they see these behaviors all the time and work with tough kids.

Another reason, is that I would like to have her rages documented by someone other than Michael and I. And the final reason, is that I would like to show everyone that we are not crazy!!!!!!!! Well, we probably are a little, or a lot. But you know what I mean. Lots of FASD kiddos do this, where they reserve these behaviors for their loving families, and the rest of the world around them think they are angels, or close to it. Akila has shown a good amount of her goofy behaviors to others, but not much of the violence, without Michael and I around. A little with a few of the PCA's, but that's it. It would be nice if she would do it for someone else to prove that WE are not the problem.

I'm not sure if 45 days is going to be enough for her to feel comfortable enough to let loose. Now, doesn't that just make me sound like a loving and supportive mom? Wanting my child to let loose and attack staff. I'm not even sure if I should be blogging about this, but it has been weighing heavy on my heart for over a week so I decided to go for it.

Date with Akila

2011-09-10T22:20:00.004-05:00

Michael and I took Akila out to dinner and to buy school shoes on Saturday afternoon. I have never enjoyed shopping with her. You would think that since she is obsessed with shopping, that she would be fun, and in a good mood since we are buying things for her. She is somewhat, but there is a bigger issue.

The issue, is that she always has a certain idea in her head of what she wants, and this is a recipe for disaster. It never works. I will never forget the time that she thought we were going to find hot pink skinny jeans with glitter on them. Or the time that she thought we were going to find jeans with rips in them and sequins on the pockets with the exact design that she had seen some girl wearing. It just plain old sucks.

Trying to get an idea of what she was hoping for in shoes doesn't help either. She wanted Nike's, and that was about all she could tell us. We told her that we weren't willing to go very high in price, so that makes it hard right there when looking at Nike's, although you can find a good deal of them for a decent price. But not the kind she has in mind. And of course, the kind she has in mind, are how do you say it.... GHETTO. There is no PC way of saying it.

We first looked At Dicks Sporting Goods. No luck. Then went to Ridgedale Mall. Looked at about every store that carries shoes, with no luck. Saw lots of great shoes, that Michael and I both likes. But she was looking for a certain pair, of course. Finally, she finds the pair. $84. Of course. I tell her that is too high and it won't work. She is not happy. Of course. Funny thing, is that hey are just a plain pair of white Nike's. Nothing else on them, pretty ugly in my mind. But she must know a few kids with them.

I show her a pair almost exactly like them, that are Nike's, but much less expensive. She doesn't want them because they don't have the circles on the bottom. On the BOTTOM. I explain that people don't see the bottom of her feet anyway. But she is adamant. So I tell her we should leave the store because there aren't any options there that fit our criteria. She wants to just try on the $84 shoes. I say no, that I don't want to tease her. She is starting to get mad. Getting a bit upset. She got a little snotty.

I told her that we should take a break from shopping and go get some dinner and then finish shopping. She didn't like that idea and she was kind of escalating. I had to tell her that we could take her back to the crisis home (I used the name of it though) if she was going to get out of control and yucky, or that we could go have dinner, and then finish shopping. She didn't like this, and asked "What'd I do?" This made me laugh inside. She will say this 4 seconds after she has hit us or kicked us and we are upset with her. She will ask this right after hitting one of the other kids, or right after calling us every swear word in the book. I explained that she didn't do anything, but I thought we should take a break, eat dinner, and then finish shopping.

She finally went along. I can guarantee, if we were not in the current living situation- meaning her living in a crisis home- she would have totally lost it at that point. But, she is aware of the situation, and trying not to lose it. She did not want to go back there early. As we were walking to the restaurant, she said this was the worst day of her life.

We then got to the restaurant, had a nice time eating, got her totally focusing off of the shoes. 3/4 through the meal, she asked if we could go back to one of the shoe stores where she had earlier seen some shoes she had liked and she was keeping as a back up, and get them. I said sure. We went there, got some shoes, and were on our way.

It was nice. We had some great moments of holding her hand, getting some great smiles and lots of loving. But we were also reminded of how much we walk on the edge with her, and how we are just one step away from disaster all the time.

First day of school 2011

2011-09-10T21:30:00.002-05:00

The first day of school was very weird. Normally, this is my favorite day of the year. I count down to it. I live for it. This year it felt very different. With Akila going into the crisis home 5 days before school started, it threw everything off. The last weekend of summer, was the hardest one for me by far.

We always take pictures on the first morning before the kids get on the bus, and we still did this year, but without Akila. That felt yucky. I wrote about how Michael and I went and had lunch with Akila and about how nice that was. So I focused on how excited the other 3 were for their first day of school. Imani and Hezekiah were particularly nervous as they were going to a new school.

They all had a great first day of school. The 3 kids, Michael and I went that evening for our first visit to see Akila in the crisis home. The picture above on the right is from the back yard there. That is serving as our official back to school picture, not that I ever do anything with the pictures (a scrap booker I am not!).

We visited her for about one hour, and it went really well. We brought along a football and threw it around in the backyard the entire time. Akila has always been very good at playing catch, with any sort of ball or other item. She is better at throwing a football than either of my boys and is good at catching it also. She had drawn some pictures for all of us and that is what the pictures are of below, her giving out the pictures. I had forgotten to pack her new backpack so we delivered that as well. So it was very pleasant. She didn't melt down when we left either.

She called 15 minutes after we got home, and that was a different story. She was crying to come home and was very homesick. We talked for awhile, it was hard. The next day, I spoke with the program manager for some advise on what to say to her during these times. We were advised not to give her a timeline, since things change and you don't want to let her down. So we just keep saying we don't know how long she will be there. She keeps proposing 3 more days, or next Tuesday. Saying she has learned her lesson.

The manager recommended telling her that the team meets next week and they will decide. She was quite content with that. She wants me to tell the team she is ready to leave, and that she should leave next Thursday, the team meets on Tuesday. I keep telling her to focus on making good choices and behaving well.

She has had pretty good behavior, but some attitude issues. This is what we expected for the first several weeks. I am even nervous that she might not display much of her aggressive behavior while staying there. Sounds funny, but I kind of want/need her to show them that side of her. Hard to explain.

But, all in all, the first day, the first week of school, was a good one for all 4 of our kids. I am very thankful for that.

Lunch with Akila

2011-09-06T12:22:00.002-05:00

Michael and I went and had lunch with Akila at school today. It is just what my mommy heart needed. We are going there tonight to see her, but I just couldn't wait another minute, and I am so glad we went, for several reasons.

One, I missed not getting to send her off on her first day of 7th grade. That was hard. Two, I am expecting that there is a possibility that tonight, she may be whining to come home, and wanting to know how much longer she has to stay, and focusing on stuff like that. Today, she was all smiles. She was the Akila that I so enjoy.

When we got there, she was just getting through the lunch line. She put her sweet smile on for us, but did not go all nutty or crazy when she saw us, that is not her style. We sat down with her and she was smiling throughout the entire lunch. She told us about her morning and about seeing Zeke in the morning. He had brought her backpack and sweatshirt for her. She had given him a big hug. He has struggled the most with her absence, so I am glad that he will get to see her each day at school.

Her aide came up after she went upstairs and told us that she had told Akila that she understood that Akila was living somewhere else right now and asked Akila what she thought about it. Akila said she didn't like it and that it was scary. She asked Akila if she knew why she was living there and Akila said it was because her behavior wasn't good. The aide asked about what kind of behavior. Akila said that she had been hitting and kicking and stuff like that. The aide told her that if she went home and did it some more, that she would probably have to return to the crisis home. I was thankful for the support. I was also happy to hear that Akila was able to say why she was there, as I have been trying to make sure she understands that.

We will still go and see Akila this evening and bring all the kids with. I am just glad that I got a little time with her today, especially time with her when she was in a good mood, was smiling and happy. My mommy heart really needed that! Thank you Jesus.

Sad mommy

2011-09-05T22:30:00.003-05:00

Akila went to Bible camp in June for 5 nights. It was wonderful, I loved the break and it could have been several more days. Angie has taken her for one night twice this summer, and it has been awesome, and wasn't long enough (although we totally appreciated the one night Angie, don't get me wrong!). We tried our first shot at respite through the county in August, the provider only had two nights open the entire summer and it was a Tuesday and Wednesday night so I took them. It was awesome. When she was gone, I will admit I was even giddy.

Yes, I missed Akila, I truly did, but to be totally honest, I was glad she was gone, even relieved. But now, it feels totally different. Yes, there is a sense of relief. I am relieved to not have to be fighting all day and to not have the tension in the house the minute she wakes up. But there is such an overwhelming sadness with her absence and it has really taken me by surprise. It is not at all related to guilt like one person asked me. There is no doubt in my mind that we made the right decision, the pain in my lower back is affirmation enough (it still is hurting from all of the restraining).

I have found myself being able to function each day, and get through daily activities with no problem. But when evening comes, and Michael and the kids have gone to bed, I lose it. I melt down. The emotions all hit me. I suppose this is normal, even healthy. I have a profound sadness in the pit of my stomach. I think it is because deep inside, I know that this is the beginning of the end. That sounds fatalistic, or weird. What I mean by that, is that I think this crisis home is the beginning of a series of events that will quite possibly lead to Akila living out of our home. Ooohhh... did I just type that. It makes it seem more realistic. Now I'm really scared.

I have known for years that there is a real possibility that she may not always be able to live in our home. I have seen the writing on the wall. Her behavior has been progressing and we have done everything we could to try to keep it at bay. But we are close. Last month, at a meeting at Children's Hospital with some Dr.'s, one of them asked how Akila was doing. I said I thought we might be one step away from a group home placement. I then explained her behaviors. This Dr. then said she thinks we are one step on the other side of a group home placement. This really stuck in my head. Not to mention the extreme out of control behaviors we have been fighting.

I'm sad that I won't get a picture of Akila before she heads off on her first day of 7th grade. We are going to go and visit her tomorrow night so I will get one of her then, so that should be just as good, right? She had her hair relaxed on Saturday at the hair salon, and I didn't get to see it. I was grocery shopping literally next door at the same time but didn't stop by. I was dying to, but didn't want to risk a scene. She loves to show off her hair after she gets a new doo. I'm sad to have missed that. We can visit her obviously, but they thought it would be good to give her the weekend to adjust before we visit and we agreed.

Now don't freak out. I'm not depressed, or having a mental breakdown. I'm just sad, and with good reason. Let me have my moment. ;)

Day 4

2011-09-04T21:41:00.003-05:00

Today we went to church without the distraction of Akila. Well, almost. Church is at 11:00, and she still had not called by the time we got there. The past few mornings, she has called around 8:30 am. Sure enough, she called around 11:05. Half way through the service, I went to the bathroom and called her back. We were going to Michael's brother's for lunch after church and I didn't want to call her back in the car like last night, in case she was sobbing again. I didn't want the kids to have to listen to me try to talk her down again.

Once again, she was wanting to come home. I tried to distract her, and ask her questions, like what she had for breakfast, what she was going to to today, etc. But she either wouldn't answer or would give a short answer and go back to her agenda quickly. I told her that we don't know when she is coming back home and that she should just focus on each day and working on showing positive behavior and controlling her anger. This is of course not what she wants to hear so she starts to get a little snotty, the Akila that I know well shows up. I tell her I have to get back into church and to call me later.

She calls later in the afternoon when we are at Dan and Tara's and is complaining about one of the boys at the home who is raging and trying to hit one of the staff. Says it scares her when she sees him doing that to the staff. I tell her that is what Imani, Hezekiah and Zeke have been watching her do to her mom and dad for 4 years, and that it scared them. Asked her if she remembers them crying. She didn't like that. Said it was different. I disagreed.

She told me again that she had learned her lesson. She asked if she could come home on Wednesday. Evidently, she decided to choose a day, and she chose Wednesday for some reason. I said no. They have said not to tell her a certain day or give her a number, since things change and you don't want to let them down or be deceitful. I keep telling her that we both need a break, she needs one from us, and we need one also from her behaviors.

As we were at Dan and Tara's, they pointed out that this is the first time we were actually able to sit and talk without having to run interference with Akila on and off the entire time. We sat and talked peacefully for hours. It was really nice. On our way home, we stopped by Dorothy's house who had a couple of meals for us that she and Julie had gotten for us (thanks ladies!). When we got home, we popped the bake n take pizza in the oven, and sat down for the rest of the evening and played Monopoly (Imani received Monopoly today for her bday from her aunt and uncle) with the 3 kids. We have never done this. Game nights do not go well with Akila. They always end in disaster, especially a game like Monopoly. Akila would never be able to have the patience to play Monopoly.

Driving home, I heard some sniffling from the back of the van and turned to see Zeke crying. I turned the radio off and asked what was the matter. He was crying pretty hard and said that he missed Akila. I choked back some tears and asked what made him think of her at that moment- I was trying to think of if Michael and I had just been talking about her. I have been trying to be careful to not be talking about her in front of the kids. He said the song on the radio made him think of her. We were listening to a Christian radio station, but I don't even know what the song was. We all just gave him a rub on the knee or whatever we could from do from our seats and told him it was good that he missed her and that we missed her also. We also told him that we were going to visit her in a few days. He liked that idea.

We will go to visit her on Tuesday evening, after her first day of school. I am excited and nervous. I am only nervous, as I don't want to deal with her whining to come home. I told her that I won't be answering the phone or calling her back if all she does is whine about coming home. But she won't understand that. She has been there for 4 days, and will probably be there for 45 days. I hope we get over this hump soon.

Heart breaking

2011-09-03T22:56:00.004-05:00

Akila has been calling us three times a day, which is what we put in her schedule. Yesterday, her calls were very upbeat, telling us about what she had been doing, asking us what we were doing. She talked to all 5 of us each time. The other 3 kids do a great job on the phone with her.

It has not been surprising that she has been seeming to enjoy it, I mentioned in the earlier post that this is kind of classic FASD. Stranger anxiety is not always there nor is fear of new situations. But she did call this afternoon and ask to come home because she was bored. I talked a little in this post about how much I hate it when Akila says she is bored- we are almost always guaranteed a rage at the end of it. So, this almost made me cringe. I wanted to say, "give me a break, you are bored constantly at home!!!!!!! That is all I ever hear from you." But I didn't of course. I just explained that she couldn't come home and changed the subject.

Tonight, we took the kids to dinner and to see the new Spy Kids movie, which was really good by the way~!! Akila called on the way home. She started to cry and said that she wanted to come home because she was terrified and didn't want to stay there another night. Well, this of course was tough to hear. I expected it, knew it was coming, but I didn't like it. She went on and on of course. I was trying to ask her what she was terrified of, without using those words as I didn't want the other kids in the car to hear that she was terrified or they will think we are cruel for making her stay there as they might not understand the dynamics of the situation.

She of course couldn't give me any reasons why she was scared or terrified, she just was. And I'm not saying that she isn't, or doesn't have reason not to be, but I was trying to make sure that there was not an incident or something. I did forget to mention that I was also to talk with one of Julie's friends who had a son stay at the same crisis home about a year ago and they loved the staff and were very satisfied with the experience. This was another affirming thing that helped us with our decision and peace.

Then Akila started to go off on the staff for their timing of when they give her the meds. They are doing it differently than how we do it at home. Akila isn't in charge, and she doesn't like it. This is what we constantly fight at home. The Rx label for the Daytrana says to take the patch off after 9 hours, but our Dr. says you can leave it on longer, and to just take it off 2 hrs before bedtime. We take it off at 6:30. Well, they have to follow the Rx to the T, which I understand. So they take it off at 4:30. Akila doesn't like this. We give her her 2nd dose of one of her meds at 4:00, they are giving it at bedtime. We do this sometimes when we forget it at 4:00, it is no big deal. But Akila is complaining about this. What's funny, is that she won't ever take the meds at anytime when we tell her to anyway.

She was also complaining that they wake her up in the morning. This cracked me up. In our house, I practically ground the kids if they are too loud in the summer and wake up Akila. Her sleeping in is our brief moments of respite. When she wakes up, all sanity breaks up and the tension starts, so we love it when she sleeps in. I totally understand that they have a schedule though, and love that they are waking her up since school starts in a few days and they are getting her in the routine.

She kept saying over and over that she had learned her lesson and that she wouldn't hurt us anymore. I so wish that were true. I really wish her brain worked that way. I eventually had to practically hang up on her. It was horrible. I did not like it. I told her that I loved her, and that I missed her. What is really weird, is that I truly do miss her. She has been gone for a night, or for a few nights before and I haven't really missed her like I do now. I obviously don't miss the tension, the raging, and the stress. But wow, is there ever a void. There is a peace, and a void at the same time. It is hard to explain.

Crisis

2011-09-02T07:38:00.003-05:00

I have mentioned how hard it has been with Akila lately. Over the past year, her rages have intensified. Over the last month, they have gotten out of control. She wakes up mad, and is mad all day. The meds don't seem to be phasing her. She fights with Michael and I, her siblings, the neighbor kids. She gets mad at the piddliest of things. We are about at the end of our rope. We have seen her raging starting to take a serious toll on the other kids.

A few weeks ago, I called our social worker and asked what our options are. Michael and I are seriously thinking that we might have to look at out of home placement soon-it is that out of control in our house right now. Since Akila is not on a waiver yet, our options are limited- hence the hoop jumping I mentioned in this post.

Our social worker did call this Monday and say that she was talking with our behavior specialist and they were wondering if we would want priority placement on a bed at a crisis home. I said yes. Didn't know this was an option. She then called on Tuesday and said there would be an opening at the end of this week or beginning of next week and wanted to know if we wanted it. I said yes, with some trepidation in my voice.

When I received this call, I was on the way to pick Akila up from a teen dancer's house where she had spent the day being babysat. I had to pull over on the side of the road to cry for a few minutes and gather myself. I also sent out a couple of texts to some friends- in particular to Dorothy and Julie. Dorothy asked if we should get together that evening. I said I couldn't til after bedtime as I can't really leave Akila home alone long at all with Michael and the kids she is so out of control- and is really bad if I'm gone. So we decided to meet at the hospital where Julie has been living for 45 days now with her sweet son Elijah who has undergone a bone marrow transplant.

Akila was suppose to go out with Angie bowling that evening, but when we got home and Angie was waiting, Akila was not in a good mood (I did not tell her about the crisis home looming of course). I had to change clothes as I was going to a memorial service for a wonderful doctor I have worked with at Children's Hospital who died last month. I had it all planned, that Akila would be out with Angie while I went to the memorial service. Akila had other plans. I just left. Eventually, Angie was able to get Akila to leave to just go and get dinner, but I don't think they were gone too long.

When I returned home, Akila was standing on the sidewalk in front of our home, with her hands on her hips, a chip on her shoulder and a scowl on her face. It went down hill from there. Not too long after that, over some piddley thing, she was trying to attack Hezekiah, and we ended up having to restrain her as she was completely out of control. It basically turned into an "epic" rage. Two hours long.

We videotaped a tiny part of it as the behavior specialist asked us to do this awhile ago and I keep forgetting to. By the time I finally got her to bed at 10:45, I texted Dorothy and Julie and asked if it was too late to come, they thankfully said no. I flew over to the hospital and had a great time hanging out with moms who get it. Even better, I brought the video of the rage to get their input. These are moms who are both parenting challenging kids, really challenging kids. They both watched it, and said you can't live like this. That was really affirming. Thanks ladies, I needed that. As it is in my nature as a mom to wonder if I am doing the right thing. We hung out til 1:30 am. In a hospital. Now you may know why I call myself psycho mom. Lots of other reasons. ;)

Wednesday, I received the call that Akila could go to the crisis home on Thursday. Apparently, this is all much faster than is normal. Usually, you are on the waiting list for a long time, several weeks at least. So then, I had less than 24 hours to get her to the Dr. for a physical, get med orders from the psychiatrist, get some laundry done so I could get her packed, etc. Thankfully, I work so closely with my docs at Children's and the special needs clinic, they were able to make the physical happen. Akila and I spent the last evening, Wednesday, at the hospital watching Elijah so Julie could go home and take some of her kids (she has 11!) to their school open house. This was perfect, as Akila loves going to the hospital and guaranteed if we were at home, she would be raging.

Spent Thursday, getting her to the physical, then she hung out with the PCA while Michael and I went to the crisis home for a 2+ hour intake. We came home, told her we were taking her somewhere to stay overnight and once in the van and driving explained where it was that she was going. We have been telling her for months that if she continues to be violent, that she will not be able to live at home. That she cannot keep on hurting her siblings and parents, and still live here. We have had family meetings, where we all individually declare our love for her, and our desire to keep our family together, but tell her that she has to stop hurting everyone. So, we explain what this house is like, what the staff are like, etc.

She says a few things like she doesn't want to go, and this sucks. We also tell her that they will bring her to school. She says that she wants to ride the bus. We tell her that in a week or two, she will ride a bus and I tell her how cool this since she has always wanted to ride a different bus. She then gets really excited. We get to the house, which is less than 10 minutes from our house. She gets out of the van, walks up to the front door, goes in when they open the door.

They introduce her to the other 3 kids that stay there currently, and some of the staff. We go downstairs to where her room is. She meets the program director and manager. She is giving them nice smiles, her shy smile. We bring her in her room. She is not fearful acting at all, or scared. We tell her we are going to leave, give her a hug and a kiss, tell her we lover her and will miss her, and leave.

Any of my other 3 kids would have been terrified and melting down. But not the FASD brain. It was like an adventure all of a sudden. She called last night, and was telling me about some of the things she had done, that she had watched the Disney channel, swung on the swing set, etc. Didn't ask to come home, didn't cry, or any of that stuff. This doesn't make me sad by any means, as I know it is classic FASD. I also know at some point, it will all wear off and she will hit the point where she will want to come home.

When we left, we had to bolt home, pick up the other kids, split up and go to two different open houses for school. I went to the downtown school where Akila and Zeke will go and Michael went with Imani and Hezekiah to the Crystal school. I really needed to connect with Akila's teachers to let them know what's up. I had talked with her 1:1 aide on Wednesday and updated her. I also ran into the Associate Principal in the hallway and let her know. She stopped and thought for a moment and said, "so maybe I shouldn't have her with a shared aide, I should have her with a 1:1 aide." Evidently, she had been planning on having the aide shared with another student, which I know they did last year and it worked, but was not ideal. I said I think that would be a good idea to do 1:1 as I anticipate it being a rough year, with it being the first year of switching classes and all that stuff. .She said OK, she would take care of it. She also said she remembers me saying a few years ago that kids with FASD get more challenging as they get older. Wow, people actually do listen to me!!! Phew, glad I ran into her.

Then I ran over to the Crystal school as I really wanted to meet the middle kids teachers also since they are going to a new school and learn more about it. I also ran into a friend of Akila's. Doesn't that sound funny. Akila has a friend. This is a sweet girl, I will call her Ellie, who use to got to school with Akila and until 3rd grade. This is back when Akila was easier to play with and she did kind of have a few friends. Then Ellie went to the Crystal school in 4th grade and we kind of lost touch. But we connected a little bit this last year and Ellie came over once or twice in the past 6 months or so and they had Akila over for a sleep over.

Here is why I love Ellie and her family. First of all, Ellie is awesome. One of those kids that any parent would want to be friends with their kid. Sweet, smart, funny, polite. All around awesome. And she is really patient and understanding with Akila, which is extremely rare with 12 year olds. Second, Ellie's mom had a brother with FASD, and totally understands Akila and the struggles our family is facing. She knows how to deal with Akila, and she knows how to help her daughter be patient with Akila. How cool and rare is that? I know, God is good.

So I ran into Ellie and her mom and dad last night and shared with them the news. My mind was in a fog last night. We dropped Akila off at the crisis home at 4:15, open houses started at 5:00. I was talking with the mom about the therapy and stuff that we will be setting up and doing in the near future, and she shared with me how she remembers being very angry as a kid and going into her room and hitting her pillow. She said the therapy was helpful for her and some of her family. She said it made no difference for her brother, which is something I referred to in my post that I linked to up above. She said she also remembers going to bed at night scared, and wondering if he would kill her.

This was also so affirming to hear, as part of why we are doing this with Akila, a big part, is for the other 3 children. God has been faithful and bringing messages of hope and affirmation when we need them throughout the week. He has placed the right people in the right places at the right time. I know for sure that we did the right thing, but that doesn't make it easier. It still feels really yucky. It stills leaves a void and a hallow feeling.

She can stay there for a max of 45 days. She will still go to school. One thing that I am hopeful for, is that they will be looking at her meds and helping us to evaluate if she is on the right meds. We can visit her anytime, but won't til next week to give her time to get settled. She called last night and I just got off the phone with her. She once again this morning seems happy and like she is at camp or on an adventure. This is a much needed respite. We don't know what will happen next. We are focusing on one day at a time. We will meet with the staff every two weeks. They will email me updates every other day. I can call them anytime.

We do appreciate all of your support and prayers. This has been a roller coaster of a week. Of a month. Of a summer. Of a year. Of 12 years. But God has been good and we are feeling some relief.

Foster grandma

2011-08-29T23:30:00.003-05:00

Hezekiah is very fortunate in so many ways, but one way is that he was born in Iowa. I know that to many of you- especially you Minnesotans, that may not sound like something that would be fortunate. Doncha know that we Minnesotans and Iowans have a rich history of making fun of each other? But the reason that Hezekiah is fortunate for being born in Iowa, is that he gets to visit his state of origin with more ease than his sibling, and we have been able to stay in touch with his foster grandma.

We knew about Hezekiah when he was one day old, but it took the longest to get him, 10 1/2 weeks. We got to meet him when he was one week old. Michael and I drove to Clear Lake, Iowa and met him and his Foster Grandma, a beautiful lady named Von at a Perkins. On a recent trip to a family reunion, we stopped at his "foster Perkins" and ate dinner. We took pictures in the same booth and had Hezekiah sit on our laps. They are in the other camera, so I will have to upload them a different time.

But today, the 3 kids and I drove to Albert Lea and Grandma Von drove there and met us at what he calls his "foster McDonalds". We have done this I think 3 or 4 times, about every 2 years or so. We have lunch, and then drive to a park. And Hezekiah absolutely loves it. Grandma Von is an amazing woman. She is a retired teacher who fostered 13 babies.

I don't know how old she is, she must be in her mid to late 70's I would guess. But what always amazes me, is that she gets out of her car, and knows each of my kids names, and how to pronounce their names- and she hasn't seen them for 2 years!!!!! I know people that are 30 that see them weekly that can't pronounce their names. This is an elderly white woman from a small town in Iowa, and she has no problem with their names. Now, that is amazing!

I made the decision not to bring Akila this year, which was hard but I know was the right thing to do. She is just too challenging right now. I brought her with to a bridal shower for my nephew's fiancee last weekend which was a little over an hour drive away and it was not fun. It was Akila, Imani and myself, and I had to pull over on the interstate as Akila was hitting and kicking both of us so much as I was driving.

Zeke was really sad that he can't go and visit his foster family, and he thinks it is really unfair. I had to explain that he actually doesn't have a foster family. He is the only of my four kids that we got right out of the hospital and I explain how cool that is and how the others don't have that story. And I got out the photo album of he and I in the NICU at the hospital. He just isn't old enough to get it yet.

We have always told the kids that when they are teenagers, we hope to do a driving tour of the southern states and visit their birth places. Akila was born in Georgia, Imani North Carolina and Zeke Florida. We can check out all the hospitals, take pictures. Maybe visit the foster families if they had ones and if they are willing to be visited. I have told them all that they will have to wait until they are adults to seek out their birth famiilies if they so choose to do so.

Of course, Akila is OBSESSED, with this idea as she is convinced that her birth family is way better than we are and that her birth mom is literally a queen and has a wonderful fantasy view of how grand they are. I of course do not say anything mean about them and let her think this about them. She is fully aware that her birth mom drank alcohol and used drugs and caused her brain damage. We have talked about that before, but have also talked about how she did not do it out of a mean spirit or anything like that but that she loved Akila. But when Akila is mad at us, over something really horrible, like I put her hair cap on and it is touching her ear and she doesn't like this, or I suggested that she and I go for a bike ride and she doesn't like that idea, I am the worst mom in the world and she wants to go live with her "real mom" in Georgia who is a "queen". Some moms might need to turn away so she wouldn't see them cry. I have to so she won't see me laugh. Sound cold? I don't mean it in a harsh way. I'm just not hurt by this as I know that it is the brain damage talking. 10 minutes later she is going to want to cuddle.

Peaceful time canoeing

2011-08-27T23:21:00.004-05:00

My awesome friend Angie and her husband took Akila overnight last night. This allowed us to have Imani's birthday party. She had 3 friends sleepover night. The friends left by 11:00 am and we spent some good family time. Michael and I took the 3 kids to Lake Calhoun and used a coupon I had bought last spring to go canoeing.

We had done this last summer with Akila and it was kind of challenging. We had gotten two canoes, so we had 3 to a canoe. Every time someone moved slightly in the canoe, Akila would freak out, panic and yell uncontrollably at everyone. She was a nervous wreck, and it was very challenging. She really focused on yelling at Imani as the girls were in one canoe and the boys were in the other. By the end of the canoe trip, Imani was pretty frustrated.

So, today was a different story. It was peaceful. It was a beautiful day, we were able to go much longer, much farther. We went all the way to Cedar Lake and were able to get out and swim at the beach. It was so nice to be able to spend good quality time with the kids and not be on edge. We ate at Tin Fish which is the cafe/restaurant on Lake Calhoun which has awesome food. It was a really nice afternoon and we all needed some good relaxing time together. Thanks Angie and Steve!! You cannot know how much we appreciate you.

Then, we came home, and things changed. The regular routine was back within 30 minutes. One of our common issues is boredom. When she finishes one activity, she is bored and wants suggestions. But she is not happy with any suggestions- and I give her really good ones, ones that are 1:1 time with me even. Things like lets bake cookies, let's go for a bike ride, let's play with clay or play-doh, moon sand, etc. She did not like the ideas, so she started to kick and hit me and Michael. We tried to calm her down, and talk her through it, but she only escalated. We were tempted to call the crisis line again, but it was so not helpful, and we didn't have the energy.

Akila and I were going to go to the dance studio where I work to help pack and tear up the dance floor as we are moving to a new location and have to be out by the end of the month, but they were done for the day by the time she got home. Then I found out they were heading to somebodies house to swim and hang out for awhile, so I grabbed Akila and headed to the gathering. Anything to distract her and get her out of the house.

We went there and swam for awhile. She wears a swim cap when she swims as her hair has relaxer in it and this is recommended. It still always gets a little wet though. On the way home, she was mad cuz it was a little wet. I said it was OK, we just didn't want it to get soaked. She started in on the fact that she wishes she were white and wants white hair. I get this, and know this is a common issue. But she takes this to a new level always. I talk to her about how beautiful her hair is, and how she can do so many cool hair styles that I could never do, and all the positive things, but in the end, she doesn't get it. It is all about wanting straight hair that she wants to be able to comb and brush and style. And I get this, I really do. But I can't change it or do anything about this. And she doesn't get this. She really doesn't.

So she started to rage about this as we drove. I explained that we can't change her hair, the only thing we can do is relax it, that is the closest thing we can do to make it straight, but then she has to wear a swim cap. Of course, this can burn her scalp a little and it does, and then she is yelling at me about this. I told her that we don't have to relax it and we can stop. Then she says I'm blaming her that her scalp is burnt. I said I am not, very calmly, several times. She is making no sense.

Then she starts to say that she wishes she were white. Then she decides she wishes she were Persian as one of her PCA's is Persian. I have a hard time not laughing at this as she was calling this awesome PCA a ugly stupid Persian the other night. Isn't that great? She is going to get us written up for a human rights violation or something. Good thing my PCA's are awesome and understanding of FASD!!!!!

I was shocked that she had even heard the term Persian and the PCA told me that she was calling her a stupid white person and she told her she wasn't white and Akila asked her what she was and she said Persian. She gave her some ammo. I'm thinking we should make up some race or something. I'm French, but I'm going to tell her that I'm Smoopian or something like that and see if I start getting called a stupid ugly Smoopian. Then I can try not to laugh each time I get called that, it might help me to stay calm. But it might make me laugh which escalates her. I guess I'll have to stick with being a stupid ugly white person.