Thursday, October 10, 2013


I think I have been in blog recovery.  Not sure I am out of it yet, but I am giving it a shot.  I have been using Google Reader for years to follow everybody's blogs and they shut it down this summer so I have not even been reading people's blogs.  Again, I think I have been in recovery.

I also have been super swamped with my job at MOFAS.  I have met some amazing families and I really enjoy working with them.  There is such a huge need, so many families struggling.  I had three main jobs in the youth development field before we started our family.  I loved all three of them.  I love working with teenagers.  And I absolutely love being a Family Resource Coordinator at MOFAS.  I never thought I would find a job in a different field that was a better fit than youth work.  I think I was wrong.

I so wish there had been someone I could have called when Akila was 6 and we first realized she had an FASD.  I called MOFAS at that point and didn't get any support.  It wasn't until I went to a training that Kari was leading that I actually met somebody else who lives this life and understands the dynamics we deal with daily.  She was the one who helped get me into blogging and took several desperate phone calls from me over the years.

I feel that I am now doing that for other families.  I don't always do it right.  I don't always say the right thing.  I don't always have the answers they are looking (rarely do I have the answers as a matter of fact).  But most of the time, just being a parent living the same type of life, makes a big difference.  Last night was one of my new support groups that meets in Eden Prairie.  We had 6 moms at it.  It was energizing.  It went great.  They were super supportive of each other.  It felt right.

Akila had a pretty good spring and summer.  She is in 9th grade.  She is struggling.  Normally, she does fine each school year until November when she starts to feel comfortable and her behaviors start up.  This year, the behaviors started up the 2nd week of school.  I think the pressure of high school is hard for her, and for the first time, she is dealing with anxiety that we have never really seen before.

My heart is breaking.  If I had the energy and the courage, I would try to start up a charter school for kids with FASDs.  The majority of our kids are too high functioning to fit into the pull out special ed programs.   They get eaten alive in the typical high schools if they are mainstreamed as they are so vulnerable and get sucked into drugs, alcohol and all things icky.   Akila is in a small high school where it would be more difficult for her to fall between the cracks.  But the downside is that there are not enough students to offer different levels of math, or other subjects.  She is having to sit through the regular 9th grade geometry, and biology for example.  She is actually doing better grade wise in those two classes, as she has some individualized help.  She is bombing English, as she doesn't have extra help.  We are working on that, but high school is going to be hard for her.

Imani, Hezekiah and Zeke are all doing great.  We had a nice summer full of adventure.  Our bummer news is that the company Michael has been working at the past two years relocated to Texas, so he is unemployed (as of mid August).  Job hunting is never fun.  Hope all is well with all of you.

Monday, April 1, 2013

The Croods

Akila was home for the Easter weekend.  She did pretty well, a few bumps here and there, a lot of riding on the fence, but all in all, a blessed weekend.

We did go to see the movie the Croods which was a funny movie.  My favorite part was driving home listening to the kids talk about it.  The main character, Eep (have no idea if I am even close on the names or not), was a girl who climbed everything and was fearless.  As we were driving, the kids were saying she was like Imani.  Makes sense, Imani is a crazy climber.  They were saying Dad is like the dad in the movie, as he was protecting his family.  Made sense.

Then, Akila said she was like the baby in the family because she bites.  I looked at her, and burst out laughing.    The baby girl in the movie was fierce, attacking, and biting, and was a fearless spaz.  Akila laughed, and for the next 30 minutes, talked about how she was the baby in the Crood family.  We laughed about this together.  Not inappropriately, she did not feel bad.  We embraced something that she recognizes in herself.  I told her that we love her, even if she is a girl who bites occasionally and acts like a total spaz.

I was impressed that she recognized this within herself.

Wednesday, March 20, 2013

Catching Up

I have five blog posts that are in draft form that I have started and not finished over the past several months.  It has been hard to blog.  For several reasons.

Akila finished her time in the Residential Treatment Center (RTC) on February 15th.  She moved into a group home 15 minutes from our home.  It is wonderful to have her closer to home.  We spend time with her as a family twice a week, and I have seen her more than that with Dr. appointments and from giving her rides after school as we waited for the school transportation to be set up.

It has been going pretty well.  She had about a 7 month honeymoon at the RTC.  It took her that long to get violent.  I have been saying for almost a year now, that the RTC is the exact kind of structure that she thrives in.  She did really well there.  Many kids do not.  She did.  It took her just under a week to get violent at the group home.  A short honeymoon.  More typical of her.

It is a great group home.  Group homes just don't have the same level of structure or a similar atmosphere that the RTC had.  The other challenge, is that I think one of the reasons that she was successful at the RTC was that her social needs were being met for the first time in years.  The two other girls in this home (there is an opening, so there will be 4 girls), are much lower functioning than Akila.  This was one of my questions when we first heard about the home.  At that point back in December, there was one girl remaining (several girls have just aged out), and she was closer to Akila.  That girl just moved out.  And the other two spots were filled with very nice girls, just ones that Akila is going to most often have a hard time relating to.  This really bums me out.  We will see how it goes after a few months.

She was really excited to move into the group home.  She is not too excited about it anymore.  It is a hard thing to get use to.  A sign of how good of a fit the RTC was for her, last week, she asked for their number and she called and talked to some of the staff.  She misses it.

She is back at her same school and I am really happy about that.  She also started back at the dance studio and she is super pumped to be taking hip hop for the first time.  She has always wanted to do hip hop, but it was on the wrong night in the past.  We found out that her hemoglobin is all out of whack and she has been started on iron supplements.  It was at 8.2 which is extremely low.  She has been feeling tired and dizzy, which makes sense with such a low iron level.  We are assuming it is menstrual related.

Emotionally, it has been kind of up and down.  We know that she cannot live at home right now.  She is still too violent and the other three kids are still recovering from the past few years.  But it still feels icky to have her not living at home.  Still feels so right, but so wrong at the same time.  Probably always will.

My job at MOFAS has been going really well, I truly enjoy the job.  It has been great to connect with families who are living with FASD and need some support on this journey.  I have been absolutely swamped, but in a good way.  Yesterday, I spent the day at the Minnesota State Capitol for the annual MOFAS Day at the Capitol.  We had a rally and then people met with their legislators.  I met with our State Senator and he agreed to help me bring some stakeholders in North Mpls together to tackle FASD.  Wahoo!!!

I have been meeting some really great people.  Professionals, adoptive families, birth families, kids and I am so impressed with all of their passion.  I had a brilliant moment last week when I helped provide the childcare at a seminar we held for parents.  We had 6 kids with FASD in the childcare, 5 of them were 8-10 year old boys.  Need I say more?  It was wild.  And I brought the game Operation.  What was I thinking?  I wasn't.  Obviously.  With their impulsivity, and sensory issues, it was not fun.  Had a hard time getting it put away and out of sight.  They kept finding it.  The kids were all really cool kids, just a little crazy having them all in the same room (tiny room), for 2 hours!

Imani, Hezekiah and Zeke are all doing great.  Imani is in spring volleyball, Hezekiah has been in a Saturday tennis program all year long, and Zeke just tried out for baseball.  Baseball is going to make the schedule really busy starting in mid-April, if stupid winter would ever leave!!!!!

God's timing has been good again in all that has happened in our lives.  There were so many details for getting Akila closer to us.  There were funding issues, school admission issues, school transportation issues and tons of other details.  He was in them all.  God is good all the time.

I will try not to wait 3 months to blog again.  I have missed you all.  :)

Tuesday, November 20, 2012


Akila comes home tomorrow at noon.  For five nights.  Most of her home visits have been two nights.  Twice it has been three nights.  Two nights is good.  Three nights gets a little rough.  Praying five nights is not super rough.

Because of the extended home visit, we are in preparation mode tonight.  Going through Akila's room, cleaning.  Akila proofing the house.  Had the kids clean up their rooms and get everything out of sight that they wouldn't want her messing with.  Having to hide some things in the basement (summer clothes, hand me downs that are too big for her or Imani still, etc.).  Trying to prevent/avoid as many power struggles as possible.

Had long conversation with the kids tonight.  Talked about if we say it is bedtime, there is to be no arguing or junky comments, like "What?  It's too early!", "Why do we have to go to bed now?", etc.  And it usually isn't even early, just not late.  They think that if there is not school the next day, that they should get to stay up late.  And we do allow this many non-school nights, when Akila is not home.  But schedules are important for her, and so they need to adjust when she is home.  It is a small concession to make for having her home.  Had to help them see that tonight.

Also talked with them about what to do when she is wanting them to play with her, and they are either done after having played for awhile with her, or they are not in the mood to play Barbies- which is about the only thing she wants to play.  And you have to play on her terms when she wants you to.  I told them that I expected them all to play with her on and off throughout her visit, but that it is OK to say no sometimes.  This usually means that she is going to get upset.  Quite upset.  We talked about that when they have said no, and she is not taking no, to start walking to where ever dad or I am in the house, so we can intervene before she gets too upset.  Sometimes we don't know this has been taking place until she is in the red zone.

We also made a hand signal that Michael or I are going to do if the kids are pushing something an just need to close their mouths.  This happens a lot especially with Zeke.  For example, at the dinner table, he will get mad about some piddley thing, like Akila has insisted on sitting in the chair that he thinks is his.  Or we will be letting her choose the restaurant after church and he will get mad about this.  In the past few months, we have given him the look and changed our tone of voice, and he is slow to catch on.  Hezekiah is also.  But we talked about the hand signal, and how they also shouldn't be obvious and start being pouty.

Talked about is it ok that she gets to choose the restaurant?  Really, when she hasn't seen us or been home in over a month, are we going to get upset about that?  I mean, I get it.  She has ruled the family for 12 years, and they are just starting to breath.  But there is still compassion that we are trying to teach them.  And for the most part, they are totally amazing in how they deal with our unique family situation.

We are all struggling with the mixed emotions that come with the situation we are living in.  We are all genuinely excited to see her tomorrow, but to be honest, we are all dreading it at the same time.  I know this is due to our own sin, and lack of trust in God and His plan.  We shouldn't expect issues.  We shouldn't expect difficulties.  But if we don't, it hurts even more when it is smacking us in the face multiple times a day. It is a protective factor that I have acquired.

Despite all of this, I have so many things to be thankful for.  I am thankful for my family, for Michael and all 4 of my kids.  I am thankful for God's provision in our lives, for the RTC that Akila is staying at currently.  I am thankful for my new job that I am absolutely loving.  I am thankful for Kathy, my neighbor/mom whom I would be lost without, I am thankful for the rest of my family who are understanding and accepting of my entire immediate family, I am thankful for my friends who have been there for me in the last year or two while things have been rough, I am thankful for my church and some exciting possibilities that are happening to support families with children with FASD, and I am thankful for my God and His steadfast love and grace that He shows me daily.  Love and grace that I do not deserve.  Love and grace that only He can give.

Saturday, November 10, 2012

Vikings Game & Imani

One more thing before I go to bed.  Imani will be leading the Vikings out of the locker room at tomorrow's game against Detroit- how cool is that!?!  A different patient from Children's Hospital and Clinics is doing this at each home game, and they asked if Imani would do it for tomorrow.

We get 4 free tickets (Zeke is at his cousin's house this weekend), free parking, free pre-game sideline tickets, vouchers for food and she gets a few gifty things too.  Looking forward to it, I am a Vikings fan and really enjoy the games.  They have been stinking the last few games, but I'm sure they will put on a good show tomorrow after being led out of the locker room by such a beautiful child!

She will be riding on an ATV with Victor the Viking, or something like that.  She has to wear a helmet, which she is not pleased about.  Have I mentioned lately that she is 12, and she acts like it?  Pretty sure that they don't show this part of the pregame on TV, but maybe check it out to see if they do.  Our tickets are close to the locker room entrance/tunnel thingie.  Should be a blast.  Skol Vikings!!

New worker

Over a month ago, our social worker passed away.  I was very surprised, and very sad for his wife and son. I didn't know him super well, but he was a very nice person with a lot of experience who we got along well with.  I have been nervous since his death, having to get a new worker is always nerve racking.  Especially with our current situation, and not knowing what lies ahead.

Akila has started the last two or three weeks to get violent at the RTC.  Took her 7 months to get comfortable enough.  I should not be shocked at that, it took her nearly 10 years at home.  She is still super happy, positive and upbeat.  It still feels icky, crappy, yet right for her to be out of the home.  I struggle just writing that.  Right is not the right word.  Ha.  Well, it is and it isn't.  Just the hardest thing in the world to describe.

We know that we have tried everything possible to make it work with her living in our home.  She just can't stop the violence and it is too hard on the other 3 kids.  I absolutely hate the emotions that go along with this situation.  We know that it is better for her, and for the other 3, for her to be placed out of the home.  And with this knowledge, we have this underlying anxiety that the county is all of a sudden going to pop her back in the home.  We know from experience, that it takes less than a week for her to get out of control again.  This is part of what makes us anxious about this possibility.

I met our new worker this week.  She is amazing.  She asked me what I would like in a social worker.  Wow, that threw me.  What a great way to start the meeting.  I rambled on and on.  Probably scared her, but it didn't seem like it.  She has a personal interest in FASD, has since college.  Has a lot of kids on her case load with FASD.  Knew more about it than any other professional I have ever met.  I was stunned.  I instantly felt some of my anxiety letting loose inside.

She had not met Akila yet (she did yesterday though), but already had a better feeling for her than any previous worker.  Akila is approved through January, and I asked what the next steps are.  She said she already knows that she would like to ask for another 5 month extension.  More anxiety melting away in me.  I then told her, that Michael and I have come to a point where we know that it is not in her best interest to live at home anymore.  I told her this has been a horrific decision to come to, and that it has taken years.  So, I asked what happens at the end of the RTC stay.  She said she would be working on finding the appropriate group home placement.  I was stunned.  Now things can always change, but the fact that she knows this is in the best interest of Akila and our family at this time, is huge.  Super huge.

Now, I know that it is possible that Akila could get better, but only with an intervention from God.  Seriously.  We have tried every human option to help her improve behavior.  It is in God's hands if He so chooses to heal her brain and the storm that brews inside of it from time to time (more like from hour to hour).

I can tell you, that this social worker is straight from God.  I have been praying for 4 weeks for a worker who understands FASD, is experienced, and easy to communicate with.  The Lord answered my prayers and then some.  And wow, what a difference it makes to work with a professional you trust, and have confidence in.  The amount of anxiety and fear that have been alleviated, is amazing.  It has given me hope, and again, all this is to the glory of God.  Only He could have worked this out like he did.  And the timing was good also.

So, this has been a good week.  I will not lie, it has also been hard.  Make up your mind Barb!!  I learned many years ago, that when it comes to raising a child with FASD, the feelings are rarely clear- it is almost always a mixed bag of emotions that comes with most of the situations we find ourselves in.  Like I can't wait to see her for Thanksgiving, but I am not excited that it will be 5 nights in a row.  This is going to be hard, and we would love some prayers.  Back to the first two sentences.  It has been good to find out some answers, and know a little more of what will happen in the next few months and year.  But it also has made it more final.  As much as we know it is not safe for her to live home full-time, there are days when I think we could do it.  There are many days when I long for it.  But I guess I long for a lot of things I know are not right.  Back to that word again.

So, if you are a praying person and feel led, thank Him for providing for Akila and our family.  Thank Him for his wisdom and the fact that He never leaves us, even when we are weak and full of anxiety and fear.  Pray that He would work out the details of her next placement, and that it would be in close proximity to us.  That she would be able to go back to her school that has been such a good fit for her.  These are my prayers.  I also thank him for stunning me.

Wednesday, October 31, 2012

Great resource

I just saw this resource today and I have been reading it for awhile, and am very impressed.  It is for educators who are working with our kids with FASD.  This is a huge need as one of the number one issues I hear from parents is frustration with the school.

We have been blessed with our school situation as our school team has been wonderful and patient with all of our unique issues we have had over the years.  I know this is rare.  FASD is something that is not covered in the education of our teachers, and rarely for psychologists, pediatricians, therapists, etc.  It is a huge challenge to find professionals who understand FASD.  Today I talked to a parent who has a great therapist who didn't think pursuing the diagnosis would be helpful.  This drives me nuts.  But I am not going to blog about that- again.

I am really looking forward to the MOFAS conference tomorrow, and meeting many of the parents I have talked to this past month.  Tomorrow marks the one month anniversary of my new job as the MOFAS Family Resource Coordinator (FRC) for Hennepin and Ramsey County.  Ten hours is not enough, I can already see that!  I have met individually with 7 parents, and spent time on the phone with 4 more.  Had a great one plus hour phone call today with an amazing mom.

I am so glad that MOFAS has these FRC positions and some of the resources they are offering now-a-days.  Seven years ago when we first started on this journey (or I should say, realized that we were on this journey- we have been on it for 13 years!), I couldn't find a support group through MOFAS.  I tried to start one up in partnership with them even, but it never really got off the ground.  Then I went to a training that Kari put on, who I now consider a friend, and started to read her blog.  Then I started this blog.  Then I started to make new friends, moms with children with FASD.  It took awhile, but I started to have hope, started to learn new strategies, new approaches.  Felt support during some of the darkest times.  We are not done in this journey, we are not done with the dark times, or the bright times, but I feel very blessed to be able to share my experiences and resources with other parents- and to learn from them as well.

Tuesday, October 23, 2012

MOFAS Statewide Conference

It is not too late to register for the MOFAS Statewide Conference which is next week, Nov. 1st and 2nd in Bloomington, MN.  Check out the info here.  I will be there and would love to see you or meet you.  I believe there may even be a few scholarships left for parents, if you are interested, let me know.

When I first started this journey 7 years ago, I was desperate for info/trainings/workshops/seminars and stuff like this.  There was not as much as there is now.  This conference will not only be jam packed with good information, but it will also be a great time to network, find others, get support.  At the end of the day on Thursday, there will be the opportunity to split up by regions, and even go out to dinner together.  Please come, and let me know if there is any way I can help you get there.

My new email for my MOFAS Family Resource Coordinator position is and I would love to hear from you.

Friday, October 5, 2012

New job!

I started a new part-time gig this week.  I am the new Hennepin/Ramsey County Family Resource Coordinator for MOFAS (Minnesota Organization on Fetal Alcohol Syndrome).  There are nine of us that cover different parts of Minnesota, you can look here to see all of us.  The gig is roughly 10 hours a week and I am really excited about it.

I will be leading support groups, meeting individually with families who are struggling or want to talk, connecting with professionals and getting the word out about FASD in general.  So, basically, I will get paid a little bit for doing what I have been doing for years.  Yahoo!!!!!

If you haven't already registered for it, the MOFAS First annual Statewide Conference is coming up on November 1 & 2.  Info is here and I will be there and would love to see you all!  There are a lot of great things going on at MOFAS right now.  Check out their website.

Tuesday, October 2, 2012

That's my girl!!

A couple of funny Akila stories.  I have always said, that I have to laugh at some of her and our adventures together, or I would be institutionalized.

Last week, I received an email that Akila had shown a staff her journal and in it she was talking of harming herself.  This also happened when she first went to the RTC last spring.  Obviously, this can be a serious issue, but I know that Akila is not suicidal- far from it at this point in her life at least.  Last spring, she had seen another girl get put on "precaution" after being suicidal, and Akila was intrigued.

I was not worried when I got the email, Akila has been in really high spirits.  I spoke with her case manager the next day who told me the part that made me laugh.  They did put her on a one day "precaution".  A staff was in her room taking out all things that she could use to harm herself.  They take almost everything.  The staff was taking her stuffed animals and Akila was mad and asking why.  The staff explained.  Then she was taking Akila's hoodie as it has a string in it.  Akila got mad, and walked away saying "This is too much work, it isn't even worth the attention".  That's my girl!!!  The staff person said she had to leave the room so Akila wouldn't see her laugh.

One day last week she also told the nurse she was pregnant so they had to administer a pregnancy test.  It was negative (praise the Lord!).  Funny part of this, is that although we have had the "sex" talk many times, she doesn't usually get it, or understand the part about how you get pregnant.  I asked her about it, and again, she heard another girl saying this and liked the attention.  That's my girl!

She is an attention seeker, she can't stand it when someone else is in the lime light at home or anywhere, even though she seems to get most of the attention (positive and negative).  Gosh I love her, she keeps me laughing.  That's my girl!~