Jun 24, 2008

Say what?

I had a meeting yesterday for Sam that I thought was only to discuss a physical therapy eval that was done on him. That is what the paper work said. I get there and it evolves into what is he doing this summer? Is he showing regression to go into summer school? Not according to his OT. Funny thing about having my blog and writing about this day. Even not being home to search my entries I was able to remember I wrote about this. And I already knew this was the one and only day that was easy. Something about no meltdowns, no running away from me, no hitting all stuck in my head. And something about the behavior comeing back a day later stuck with me. I also clearly remeber talking to the OT about this. Today her words haunt me like no tomarrow. It's not related to the therapy he got that day cause I don't see how. I could understand if this was my first time going through this. It's my third time. I was taught along the way how to spot signs of regression. You learn something and then don't know it anymore. You have good behavoirs one day and then bad the next and the next and the next and the next. Sam's behavior issues we have are sensory related. He's out of sync so he is seeking the input he needs. Running and hitting are his way to get his body to feel better. Meltdowns occur when he is so out of whack that he no longer knows what to do to feel better. His first session with the OT was sensory based (rolling) and every one after that were fine motor (puzzles). I did learn something new though. In order to prove regression not only does the parent have to see it and write it down...but the therapist does as well. Clearly our OT was working against us. Sam does not get summer school. Even though he clearly needs it. But without proof from the OT that he regressed he can't go. Does it get any therapy during the summer time? No. Why? Because they don't provide home based therapy during any breaks from school. None. zip. zero. nada.
I may not be able to change things for Sam....but I just might be able to change things for future kids in need who fall through the cracks just like Sam did. I'm going to be doing lots of research to find out how to change the law that kids need to show signs of regression to get into summer school. I want the law to allow kids who are clearly in need of services to start right away can go as well. I know this is going to take a lot of time but I think I can do this. It's not fair that Sam meets all the requirements but one. I also think that home based services should also continue when summer school is open too. That way that option is available if the summer school program is full. I just hope I can get this done. It won't help Sam and I totally understand that....but it can help out our children of the future and they are just as important as Sam is.
Sam does start school in september. I just have to come up with a schedule for the summer time for him. I know I can work with him just going to have up the intensity of it all. At least I can do something to help him. And that is all that matters at this point.


Honeybell said...

Oh sweetie. How frustrating.

Once again though, good for you for fighting for your kids. I'm stumbling this.

momto4kidsny said...

honeybell...frustrating is a good word for what I'm feeling. Though it's good for using it towards things that need to get done!
Thanks for stumbling it!

trish @ Another piece of the puzzle said...

So sorry to hear that they are not being helpful! My son is supposed to get 5 weeks of playgroup (he goes once a week) this summer but the van didn't come to pick him up today so he missed the first week.

That is awesome that you have some ideas to get involved and help future kiddos!