At the beginning fo this week I began drafting a new post about how it was another year and once again we were fighting to get an air conditioned bus for Charlie to ride on. For those of you that don’t remember, Charlie’s brain damage has left him unable to properly regulate his body temperature. When in the heat, he turns very pink and then becomes limp and lethargic. Our neurologist has informed us that if we aren’t careful, this could even lead to a seizure (like when a child seizes from a high fever).

Last year I let Charlie ride the bus in the morning, but the afternoon was a no-go, so I picked him up from school. By the end of the year, I was so completely exhausted from Parvo and pregnancy I paid someone to bring him home every afternoon, which the school didn’t really like.

This year I’ve got two infants (and a hernia), so I knew that I needed to have the afternoon bus as an option. I had it written into the IEP in May, had the neurologist write a note, faxed it to the nurse before school started, etc. On the first day of school, it was the same bus as last year–the one with no air conditioning.

I pretty much resigned myself to another year of picking Charlie up, but his teacher was very nice and faxed the request to transportation for an air conditioned bus.

The next day, a new bus driver called–she has the route now and has an air conditioned bus.

And me? I feel like a horrible person. I’m the reason that the old bus driver lost her route. And what happened to her? I don’t even know. I like the old bus driver. She was really nice on the days when I was late getting out the door, and she made gift bags for the kids. She really cared about them. It doesn’t come up much here on the blog, but I am a HUGE fan of community and this feels distinctly un-neighborly. Ugh!

So now we have our air conditioned bus. Charlie can ride to and from school and I don’t have to worry at all about overheating or seizures. We got exactly what we needed without having to beg or fight or anything. This is just what we wanted.

Some victories are bittersweet, though.

No good picture of Charlie, so here's one of the twins that cracks me up.

Self Contained.

Those are the words that have been looming over me since Charlie’s IEP on Wednesday.

The IEP itself was good–I’m at the point where they can tell me that Charlie’s achieved 24% of the cognitive goals of a two-year-old and I’m just glad to see improvement. Between you and me, I don’t see how a standard test could possibly measure the intelligence of my not-standard child. I’m beyond pleased with Charlie’s teachers/therapists/aides and the incredible work they do with the kids.

But I know these days will come to an end and I said as much at the IEP. Well, I mentioned that there are no special education classes beyond preschool at his current location and his teacher corrected me and said, “well, there are no self-contained classes.”

Now she didn’t say that Charlie would be in a self-contained class. She didn’t, but there it hung and I’ve been unable to let it go.

At my last job, self-contained felt like one step up from an institution. I don’t think there was a physically disabled child in the building, so the entire population of the class consisted of children with varying degrees of cognitive impairment. They had class in the basement and we rarely saw them. Some were friendly, but several were combative and hard to handle. The class was taught by sweet old woman who was retiring at the end of the year and who would often doze off in the middle of class.

At the school before that, self-contained kids cleaned tables in the student lounge. They also made holiday crafts out of Popsicle sticks and passed them out to the teachers.

In both cases I found the whole thing so stereotypical so as to border on comical.

In my mind, self-contained is not an option for Charlie. The things I want for Charlie are not to be found in that room. I want Charlie to be integrated into this community–in whatever way he can. I’m less interested in him learning how to draw a circle and more interested in him having a place–in the classroom, at restaurants, while shopping. “Containing” him won’t accomplish that. IF he’s got the intelligence they say he has (and I’m not saying I agree), then all the special classes in the world won’t make him normal. And if he’s smarter than they think, I don’t think that a class full of children with with cognitive/social/emotional issues doing crafts is really going to help him out.

My ideal would be him spending some, if not all, of his day with his typical peers. I’m aware that this would undoubtedly involve an aide. I’m aware that school districts hate to give kids their own aide.

And so it sits there, haunting me. Nothing has to be decided now–he’s got two more years where he is and I am very happy with that. But I know what’s coming. I know the decisions that will have to be made and the choices I will face. I just hope that I’m ready when the time comes.