Wednesday, September 28, 2011

The "thing" about SPD

Any parent of a child with special needs will tell you that their child tries SO HARD. I mean, my own children are constantly trying...they want to make others happy and they want to do their best.

It's been hard for us because the boys have been "trying really hard" and looking pretty "typical" at special needs preschool...and then promptly unraveling afterwards at either daycare, or more likely home. Long nights of sobbing kids have left me exhausted.

I spoke with one of their teachers and explained: we want to try to PREVENT them from having trouble, not deal with the issue when they are melting down, sobbing hot messes. My point only sorta made its way across.

I am scared to death. My kids will be 5 in February, and their IEP will be up for review. Currently we have therapy almost every day, they wear things like weight belts and tension vests, and we make a host of accommodations for them. (We have swings in our house for God's sakes!) And everyone says "they look so typical" and "they are doing so well." Of course they do! That's the point!

In reality, they are always going to have SPD. They will flourish with help, but struggle without it. It was only a few short years ago that Summy didn't make eye contact or hug or kiss us. That Jack almost bit through his tongue and got an incident report daily from daycare because he was getting hurt so much.

I am so afraid of the great unknown. It's awesome they appear so "typical," but they are always going to have SPD.


Laura said...

I get what you are saying. And I agree, they'll always have it and we'll always be worrying about this. Then I think about how I've always had this same sense of fear and panic when they were so tiny and couldn't roll over when everyone else's kids could crawl and pull up. I felt this way when they couldn't even look at an empty clean spoon without gagging and screaming and puking, when everyone else's kids were chowing down on slices of apple and mashed potatoes. So many other things that Prematurity and SPD have thrown at us, more importantly they, have overcome. We will get there, and only when they show us how well they can handle it all in their own way on their own schedule, will we be able to breathe comfortably again. ((HUGS))

tbonegrl said...

Laura, you are so right.

I like to think of their SPD as "superpowers."

Missy said...

Before the kids go to kindergarten they must be re-evaluated. Have they contacted you to go over the paperwork to re-evaluate? It is federal law. I freaked out when they gave me the paperwork for Matthew a few years ago. Christopher will be having the re-eval this year. He will be of kindergarten age next school year; we're not letting him go though. He will have an extra year.