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.