July 12, 2013

SPD, FAS, and more!

 

Well, I’m still working on a post from Disney.  That’s a lot of pixelating.

In the mean time, I’m not sure I ever posted an update on Tootaw’s assessment and services.

In her assessment with the school district, they essentially decided that she had global delays.  They decided to send the early childhood special education teacher out to our house twice a week.   Initially I thought, wow, they see the same things that I do and we’re actually getting services!

After two months of them coming out I’m thinking, wow, I hope I can get out of this in the fall!

Mostly they’re doing some interactive play with her – but it’s nothing that we don’t already do at home on a regular basis.  I’m not seeing the benefit.  I think that in general, they’re a little off target on what the real issues are.

After a lot more research, most of what Tootaw displays looks like sensory processing disorder.  I don’t know if it is just straight up sensory processing, if it is the fetal alcohol syndrome displaying that way, or both, but either way, we address it in the same way. 

We also have cognitive hurdles to jump and a lot of retention issues still, which I can only assume is part of the FAS.

I think we’re going to go forward with getting an assessment done by a child development team at the university hospital close by.  They have a specialized team that I think will be more helpful in possibly getting some occupational therapy that is better aimed at the issues at hand.  The only thing that makes me a little nervous about this route, is that it’s possible it will require a diagnosis for services. 

There is not a question in my mind that she has sensory processing disorder.  We’ve been told as much by three different professionals that she has FAS (without a formal diagnosis).  I’m just not sure I want a formal diagnosis.  What if we can overcome most of this and she can move forward without ever remembering?  What if we can get to a point where it doesn’t matter that she or anyone else knows about these issues?  If we can, I don’t want a diagnosis following her forever, or her feeling like a diagnosis is at all who she is.

So, we’ll see.  If I think they’re going to have to do a formal diagnosis, I may back off.  Or maybe not. 

Through a training that we’re in the middle of (more on that later), we have learned a lot about sensory processing disorder, and I actually feel pretty empowered to work with it at home.  But, I’d feel better if I had someone outside of us deciphering if she’s making progress.

Speaking of progress, though, she has made quite a bit.  We’ve seen lots of changes, even in cognition, in just the last few months.  That gives us so much hope.

I think that when it comes to schooling, we’ll have some difficulty.  I’ve actually decided to homeschool (more on that later too.), and this is one of the big reasons.  I can go at her pace, repeat things as needed, and she can be upside down while I’m teaching her if she wants to be.  I think otherwise school would just frustrate her, and I don’t want that. 

Anyway, that’s a very short and somewhat jumbled summation of what is going on in that arena.  I know that there were a few of you who were interested in the route we were taking for getting her needs addressed because you see some of the same needs in your kids, so I wanted to do an update. 

We’ll just keep at it. 

8 comments:

  1. FASD will follow Tootaw for life. I wouldn't be afraid of getting the diagnosis now. While you may be able to heal significantly at home in these early years, you may need services later when she is older. Having that diagnosis can help. It certainly doesn't have to define her though!!!! I'm quite confident you can manage that balance.

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    1. Looking far ahead, a diagnosis will get her special accomodations in college if she needs them.

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    2. We may end up getting it diagnosed, I'm not sure. Since we're homeschooling, I'm not as concerned with getting services from the school district, and two doctors I've talked with said that they can refer services without an official diagnosis. So we're gonna play it by ear!

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  2. I agree with the others that replied. Getting a diagnosis will allow special services for her all the way through college. Also since she is in fostercare/adoption you will have the opportunity to special funding (rates) to help you pay for any services that may not be covered by insurance.

    I am currently walking this journey with my 13 yr old who has global delays (adopted through foster care).

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  3. I hesitated for a long time to have an official diagnosis for my bio son. I was afraid of the "labeling". After much, much struggle it was simply unavoidable. I am so glad we followed through!! He is now going into 4th grade and doing fantastic. It's a relatively small school, so the teachers know our kids and therefore our "quirks" as we prefer to call them :) His diagnosis is partly why we were able to get into the "Single Gender" (all boy) class for 1st, 2nd and 3rd grades. I think it's been helpful for the staff to understand he is really a good hearted kid. The frustrating behaviors they see are due to his quirks, not a defiant spirit. AND I've learned another surprise benefit. I mourned, literally cried, that my boy had to deal with "all these issues". In reality, they aren't that big a deal. While at a playdate, his friend was doing some repetitive motion (motor tic) with his hands & mine asked him why he did that. The mom said her son started to get defensive then mine said "Well...my body does x,y,z so I'm guessing that's what your body does." Dealing with his challenges/quirks has required us to really teach our kids that God made everyone different and that's a good thing. We embrace our quirks and those of others!

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  4. Im starting to worry about you guys its been so long since youve posted. Hope all is well.

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  5. Praying for you and your sweet family, Maggie. I can't imagine that you would be very busy! Lol! :) Seriously, though, hope everyone is well and healthy and things are going good. Hope to see you post soon.

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  6. We miss you guys! Hoping all is well and sending best wishes from New Zealand!

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Thanks for commenting!!

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