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?