I have to go to a meeting at Ian's school at 10, and I don't want to go.
The school is offering an ABA training session for parents of the kids in the transitional class (the high functioning class where the kids have the potential to be mainstreamed). Applied Behavior Analysis is one approach for helping kids with autism be more normal. It's basically the star on the chart method that many parents use with little kids to reward good behavior, like cleaning their room and playing nicely with siblings. It's just taken to an extreme level. When Ian is at school, aides monitor his behavior at all times. They make notes on a chart and later make graphs that chart his progress over months. They measure whether or not he manages frustration and OCD tics.
If he does a good job, he comes home with four green lights and then is given play coins, which he can exchange for prizes at the end of the week. If he does a bad job, then it's red lights and no coins. He's been doing a good job. He hasn't gotten a red light in months.
ABA therapy is very controversial in the autism community. Some think that kids should not be treated like dogs and that this method doesn't do a good job at treating the cause of the frustration. Others love it. I think it is less useful with higher functioning kids, but we go along with it, because there aren't good alternative programs around here.
This training meeting is supposed to teach us new ways to use this model at home. The trouble is that I'm exhausted. Ian is turning ten next week and we've been managing his autism for eight years. Two years of those eight were spent constantly talking to him, so he would learn how to talk. The thought of setting up a new behavior chart at home makes me want to vomit.
His speech also improved dramatically. He can carry on a conversation about the Lorax. He can tell me what happened at school. He can tell me how he's feeling. He and his brother jabber on and on about shows on Cartoon Network. It took a lot of work to get him to this point, but he's doing great. He still needs a lot of work filling in the weird gaps in his knowledge and vocabulary. I hired a babysitter to come here on Saturday mornings to read and talk about picture books with him, so that we can fill in these weird knowledge holes. This Saturday, she talked to him about Eskimos and igloos.
Ian is a success story. We have reprogrammed him. But it has taken an enormous toll on me. I should be doing more than I am right now, but I just can't. I barely have enough energy to check his homework at night. I should be finding new after school programs for him and I'm not.
It is also costly for the school district, which has to hire the staff to keep track of ABA data and provide him with speech therapy. Most school districts would not pay for this. Even this fancy school district could be doing more to help me out in the after school hours, but they won't.
Last Saturday, we went to a party in town and I talked with my friend, Eliza, about her amazing work at a charter school in Newark. This charter school is one of those programs that takes kids from a poor, inner city environment and reprograms them to succeed in school. She works six days a week reprogramming the kids. The teachers work so intensely with the kids, because they have to not only teach math and social studies, but they also have to teach the values of hardwork and discipline. She said they have to provide all the stuff that middle class families routinely give their kids.
Again, this is costly. The teachers at this charter school work very long hours and are motivated by an unusual commitment. Few people could do what Eliza does. This model could not be scaled up and replicated easily.
So, reprogramming works. It can make autistic kids more normal. It can give poor kids the tools to succeed in school and in the work world. But are we willing to pay for it?