The Po Show

The Ultimate Advocate:
A Mother's Asperger Journey

I've been thinking about this for a long time, and I've decided to try and write a book. True to form, all I've got so far is the title (see above).

There are a lot of books out there written by parents with profoundly autistic kids. There are books written by adults who have recently been diagnosed with Aspergers and finally can make some sense about why they've been so "different" all their lives. But I want to tell our story, the story about the family of the child who speaks and reads and looks "normal," but needs help, has always needed help. I want to write the book that I wish I could have READ back when Matthew was five, before we started our agonizing, convoluted, never-ending attempts to get someone to help us. So really, while it's Matthew's story, this will be more my story, of what we went through and what we learned.

The biggest problem is, and this is what has made me hesitant to even think about doing this, is that it IS Matthew's story. And there is nothing on earth that Matthew hates more than people talking about him. The idea of a book that talks about how he had so many problems, how he was so troubled, may just be more than he can take. I don't know. I need to formulate the structure of how it will all be presented before I can talk to him. Maybe he will actually be heartened by the idea that some other kid may be spared the suffering he went through, if his/her parents can walk into an IEP meeting better informed, better prepared, and more knowledgeable of what rights their child has.

But I do want it to be personal, and that's the other problem. I can't really talk about what a fucked up process this has all been, without specifically talking about organizations and individuals in a critical manner. And while they do deserve to be criticized, I still believe that everyone truly did try to do the best they could for Matthew. It's just that their best wasn't nearly good enough. There's also the problem of bitching out the school district, when we are dependent on them to continue paying for Matthew to go to Clear View (or wherever he ends up going, as his needs evolve).

What do you guys think?

A Question of Matthew

I had a bunch of stuff to write about our wonderful trip to CA, which was filled to bursting with all kinds of fun and parties and seeing old friends and other nifty goodness, but I've been exhausted and have had a migraine on and off (largely on) since the trip back on Monday.

This is about something completely different, and lacking in nifty goodness. Nothing horrible happened, and it's really okay overall, but it was one of those moments that highlight and floodlight some of the more difficult and painful elements of the reality of our lives.

The mom of one of Tessa's friends, M, asked yesterday if Tessa would like to come over for a playdate tomorrow, and I tentatively said yes. Then today the mom left me a message saying that instead, would it be okay if M came over to our house because of a scheduling conflict she had with her other daughter. That was perfectly all right with me (other than the fact that I have to straighten the house since people are coming over and there's still crap all around from unpacking from our trip :p). I called her back to tell her that I would be happy to bring M home with us after school tomorrow.

During the course of the conversation, the mom asked what time Matthew comes home from school, and then she said, "You've said before that Matthew really needs to maintain a routine after school. What does that look like?"

I was a little taken aback, but replied that he likes to sit at the computer and research all of the millions of video games he's interested in, and then he plays his games, and often he reads. She kept saying, "Umm hmm," like she wanted more information. "Nothing too exciting," I said, feeling a little confused.

"Does he need to eat dinner at a certain time?," she asked (all of this was asked nicely on her part; she really is a very nice person). I replied that he usually likes to eat around 5:30, but if he's had a snack that's not that big a deal to him. I changed the subject and said that the girls could play in the backyard tomorrow since it's supposed to be 70 degrees, which led to a discussion of the weather, and then we said goodbye.

After I hung up, it occurred to me why she was asking about Matthew (yes, I'm a little slow on the uptake today; Day 3 of migraine, thanks very much!). The last time M was over for a playdate, Matthew's bus broke down on the way home and he was furious when he got home. I had warned the girls that he was going to be upset when he got home, and they stayed in Tessa's room with the door closed when he arrived. At one point they wanted to come back out and continue playing Hullabaloo in the dining room, but I had to ask them to stay in Tessa's room while I continued trying to help Matthew calm down.

Today I realized that M must have gone home and told her mother that Tessa's brother had been screaming and crying (and smacking himself repeatedly in the head, but she probably didn't see that part) when he came home, so naturally the mom had been concerned. She probably hadn't heard the part about how the bus had broken down from M (though I did mention it when she came to pick M up, that Matthew had had a bad day because his bus had broken down), and that was the reason he had been so upset, so she was a little worried about having her child around an older, bigger kid who acted in such a volatile fashion.

I've been used to dealing with parents who obviously didn't understand what the "deal" with Matthew is, who only knew that he'd hit or pushed their kids or that Matthew acted "weird." These have all been the parents of classmates of Matthew's over the years. This is really the first time that I've encountered fear and disquiet from a parent of one of Tessa's peers with regard to Matthew. I've been waiting for years for Tessa's friends to start asking her "What is WRONG with your brother?" and it's probably happened plenty of times outside my earshot. But this was the first time a parent of Tessa's peer has expressed (in a very indirect way) concerns about Matthew's behavior around her child. I know, she just wants to try to understand him, thus the questions, and that's good, but I'm left feeling pained at yet another example of the world looking at him with trepidation and a lack of understanding.

The worst part is the anticipation that it'll just keep getting worse, as time goes on, as he gets older, and no matter how much he "improves," his behavior will always strike people as odd and scary and bewildering, and they will keep questioning what is "wrong" with him.