There was a meeting today at Janey's school to let parents meet the mayor, and talk to him about how the budget cuts would affect our kids. I appreciated the mayor coming to the meeting (along with a lot of his staff) and I think he's a decent guy. But a lot of the meeting felt like politics as usual, like broad statements about the future and a vision and tough decisions and a lot of other key words that don't add up to a lot. We each had a chance to say briefly who we were and what our thoughts were about the cuts (which in Janey's school will result basically in one extra child in each class, bringing the cap in the autism only classes from 9 to 10), but other than that, there wasn't a lot of time for discussion, and what there was, as is often the case, was dominated by a few parents. I sat there thinking of all I wished I could say to the mayor, if I had his ear.
I'd want to tell him, to start with, that adding just one kid to a class like Janey's is a very penny wise pound foolish move. I'd want him to understand that Janey hangs on to being able to function in a her classroom as it is now by a thread, often. She has great teachers and great therapists and a great support staff, a caring principal---we are lucky. It's not that they aren't doing all they can with what they have, it's more that any kind of classroom is tough for Janey, and for the other kids in the class to get the attention they need, Janey needs someone right with her most of the time. I've never pushed for a one on one aide. There are only 7 kids in the about 160 autistic kids at her school that have one (a statistic I learned today). Janey should probably be among those, and I would guess one or two of those (not kids I know in any way, just a guess) are the result of better parent advocating than I do and not a greater need than Janey has. If the class has another child, especially a child with a lot of need for supervision, that might be the tipping point where Janey is not able to learn, or not able to be controlled. It could be a safety issue, or at the very least, a happiness for all involved issue. I've never pushed for an outside placement, really. I don't want one. I want Janey to go to school where she is. But if it ever became obvious that just wasn't working, I would do what I had to do, and that might cost the schools a lot more than what she is costing right now.
I would want the mayor to understand autism in all its forms. He used a lot of acronyms, and he has worked with autism groups, but unless he's spent a lot of time with a variety of kids with autism, he mostly likely, in fact almost certainly, doesn't really get them. He doesn't get the wide reaches of the spectrum, he doesn't get how inclusion doesn't work for every child, he doesn't get how even a small amount less time at school might make a huge difference at home, he doesn't get how a tiny change in routine can be a disaster.
I want the mayor to know he should listen to more than the squeaky wheel. I think politicians sometimes operate on the assumption that people are going to complain if something is wrong. Well, if you can't speak, you can't complain. If you are a parent of a child with autism, and you are just barely hanging on, and you haven't slept for nights, and you have no child care whatsoever, you aren't going to go to budget meetings or rallies. You need help, but you don't know who to ask or what to ask for. I want him to want the best for kids like Janey, even if their parents aren't expert advocates.
More than anything, I would want the mayor to know what a great kid Janey is. I wouldn't want him to look at statistics about a child like her and assume she isn't important. She can't talk much, she will not go to college, she won't raise your test scores, she won't hold a job. She is going to need help all her life. But she is worth it. She is beautiful, she is funny, she is interesting, she is deserving of love and services and caring and tax dollars. She is a citizen of the fair city of Boston, as much as anyone else. I hope the mayor, and everyone else in a position of leadership, understands that every single person, regardless of diagnosis or income or position or ability to demand, is worth caring for.