I failed my son
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.
What can one say other than ((hugs)) (and I despise using that). It's just appropriate.
That reminds me, I remember a photo from a few years back of your son and IIRC he was being Nuzzled by a horse (and there was a woman in the photo I think you labelled something like "Random horsey lady"!) In the photo he looked very much like he was having a good laugh and enjoying the horse-hello 🙂 As disabled as your son is it must be very comforting to you to know that Davids overall quality of life is pretty good.
OK Time to surface. You are missed.
I second that. Hope all is well!
I third that. I miss your writing.
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I fourth it. Your blog has been very meaningful to me. Hope you are OK.
you are missed….I especially missed hearing what you thought about the recent article in the NYT regarding growth attenuation. I am wondering if they sought you out for information on this. I miss hearing your virtual voice, I hope all is well with you and Pearlsky.
Can I fifth it? I miss you, too.
Just wanted to say hey. Miss you, hope you guys are all well. 🙂
OK Dad. It's been a year. There are a bunch of out here who really care and are concerned about your silence. I will admit to being both worried and pissed. Is it time to just delete you? That's so final. A hint would be nice.