A blessing in disguise

Okay, I'm back (in case anyone missed me). Boy, it has been a busy-beyond-belief six months. So much to say (get over yourself, dude), so little time to say it. So, let's dive right in.

As of the last post, I was less than happy, and more than a little worried and stressed-out about where my boy would go for kindergarten. Because public schools in my town are largely selected by lottery, there was no guarantee that we'd get into the seemingly excellent neighborhood school. As luck (or fate) would have it, however, we won the lottery. I can't say it was just luck-- we made my boy's IEP was written to emphasize the importance of the local school and to preview the shit-storm we would cause if assigned to a school that was not up to snuff. (an IEP, or Individual Education Plan, is the document negotiated with the school district that specifies the services needed for any child entitled to "special education").

So, it is now more than two months into the school year and I could hardly be more pleased. Let's start with the IEP meeting itself, which was over the Summer. I have read many horror stories by parents who had to fight tooth and nail for even the most basic services. Especially in the midst of a budget crisis, school districts often cut corners and limit services as much as possible. The IEP that came out of this meeting would be the blueprint for a year, and can be hard to change. So, we went in loaded for bear. I decided I would fight like hell for everything my boy might need. It really isn't a lot, but it is a constant throughout the day.

His needs are purely physical. For example, he needs someone to transfer him from his powerchair to the rug on the floor, or his low cube chair, for morning circle. He needs help to pick up markers or pencils, to reach things that he can't access, and to open his lunch box. I also wanted to have a "para-professional," as they are called, available for safety -- to make sure he doesn't fall over when sitting on the floor -- and to make necessary adaptations -- with writing utensils or with objects that have to be manipulated as part of a lesson, for example. It is little things, but lots of little things throughout the day. So I was hell-bent on getting him "100% designated adult support"--in other words, making sure that a paraprofessional was always available as needed for the entire school day. This, I understood from my research, was the brass ring that is entirely justified for kids with SMA, but is as elusive as a rent-controlled apartment on the Upper East Side in Manhattan.

So, I headed to the IEP with extensive notes and prepared for a tussle. I was not, however, prepared for what actually happened. The principal announced that my boy would get 100% designated adult support before we even asked for it. Not only that, he proclaimed that the school district would renovate the bathroom next to my boy's classroom to add an accessible stall. Otherwise, he explained, they would no longer be able to count on all the good press they get from him (he's a superstar principal who has been written up not only in the local paper, but also major national newspapers).

Wow. It is hard to express how wonderful this was. Not just because we got the support needed to provide the educational setting my boy needs (and that he and every other child deserves), but also because it showed the he was welcome at this school. The tone set by the principal was the exact opposite of the message we got from the head of school at the private school we pay an insane amount of money for my girl to attend.

Okay, so far so good, I thought. But, would there be follow-through? Wasn't this too good to be true? Apparently not. We just had our first parent-teacher conference and the only real issue with the support my boy gets is that one of the team of paraprofessionals does a bit too much for him--intervening when he really can do something for himself, even if a bit difficult. I must say, that's a good problem to have. Still important to address because he needs to be pushed to do all he can and not use his physical limitations as an excuse for the easy way out, but nonetheless a far better problem to have than neglect, lack of support, and miserly and begrudging "services."

So, the private school's decision was a blessing in disguise. They were not prepared to do it right, so better that they didn't try. I still don't like the way the message was delivered and was offended by the attitude and ignorance demonstrated by the head of school, but it worked out just as it needed to.