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.