I went to my son’s IEP today, he has 16 months left of school. The drive to his residential facility is about two hours, it makes for a long day. A long, horrible day.
The law says that every child with a disability is to be educated as much as possible with their non-disabled peers. This is one of the basic ideas of special education. It is part of the IDEA. It is in the definition of FAPE (Free Appropriate Public Education) and LRE (Least Restrictive Environment).
David has been at this facility for about eight years. It is pretty much the “most” restrictive environment he can be in. There are no non-disabled students. There are no somewhat-disabled students. There are no sort-of-disabled students. There are only severely disabled students.
We already knew that Pearlsky was pretty messed up by the time David came along. I thought “maybe there will be somebody to take care of Pearlsky when I’m gone.” Wrong.
All those hopes for a “normal” child. A son! We will get it right this time. The holy one, blessed be He can’t be that much of a dick, can he?
It hurts visiting David. Seeing him is tough. He has a booming voice, my nose (pre-nose job), and apparently my sense of humor. At one point in the meeting I made a self-depreciating remark, the only other male in the room (David’s PT of eight years) joined in on the joke, and David burst out laughing. Perfect, appropriate timing. But don’t get me wrong, he is severely disabled, non-mobile, no communication, etc. It just fucking hurts.
I brought two in the world for the selfish reason that I wanted to have children. I stopped asking “why me?” many years ago. I do ask “why them?”
I think his quality of life, from his point of view, is good. I hope so. I hope and pray he does not know how disabled he is. But I do. And it hurts like a bitch.
But I would never admit that.