I started blogging back in June of 2005 with the thought that writing publicly about Charlie on the internet would help me to write a book about autism, about Charlie. I hoped for some feedback from readers, for support and "I know what you're talking about" and "I see what you mean though our experience has not been quite like that" and "what do you think about X." I had been on several email discussion lists about autism since the spring of 1999 when it became clear that "something was wrong" with Charlie; indeed, my discovery of the resources of the internet occurred simultaneously with Jim's and my search to find out about how we could best help him.
I have been wanting to write "the Charlie-book" for many years. Like many parents and family members of autistic children---like more and more autistic individuals----I felt a pressing need to tell and share the tremendous, painful, sometimes terrifying, always worth it, often exhausting yet exhilarating experiences that characterize a typical day in Autismland. On the Autism Reality Show.
As the years passed from that hot, awful July day in Minnesota when we received Charlie's official autism diagnosis, certain things became apparent as I thought about what my book would be. First, the number of autism books---especially memoirs by parents---kept increasing, and continues too, and I could only wonder, what is it about Charlie and our experience that is unique enough that anyone would want to buy a book about it?
Second, so many of the books that one heard the most about had one of two angles: They were "how to" books (usually written by professionals, sometimes by relatives of autistic children) that described some method or treatment of therapy that had remarkable and revolutionary results in helping a child; or they were parent narratives of "how I recovered my child from autism."
And Charlie, far from "recovering," was struggling. For the past four years, every day was a struggle for Charlie and for us. We kept wondering what behavior---what more and more violent, aggressive, and self-injurious behaviors---we would witness? how much longer would Charlie not be able to read? would "therapy"---speech or OT or ABA or VB or PT or so many other types---ever end? would we just keep reading those same goals on Charlie's IEP and note the long lines of 3's on his progress report, signifying "minimal progress"?
I mean, who wants to read about an autistic kid who hits his head?
People feel bad to hear about it. They say "I am so sorry." They don't say anything. They look the other way and pretend they never saw it happen.
These people have never seen what a lovely boy my autistic son Charlie is, as if those terrible behaviors that Charlie did (still does) disqualify his story and him from being readable, or interesting, or best-selling, unlike an account of a "mildly" autistic child who had pretty much "recovered" from autism. And that desire---rather desperate, as I look back---to say "Charlie is the greatest of kids, sure he struggles, all of our kids all across the spectrum struggle"---this desire impelled me even more to write about Charlie, and publicly, on the internet. Too often, we parents tend to emphasize the tough things our kids go through, and to talk more about the negative than the positive. And some days, it does seem that more or only the negative happens.
Call me overly upbeat, but I know that something good happens everyday for Charlie. Because every day with Charlie is good---no matter what happens---because it was a day with Charlie, with me being Charlie's mother.
I have to say, my original intent of writing about the realities of Charlie's life and of ours has spun out into much more than I had ever envisioned. I have made so many friends, so many fellow travellers on the long road in Autismland, learned so much and learned how much I have still to learn. I have received so many kind words about Charlie.
Jim sometimes refers to the past several months as the "year of the blog" and 2005-2006 in some ways became that for our small family. Even more, it has been the year in which Charlie went to three different schools, was out of school for a month in November (an experience that wrent him with anxiety), hit some spectacular lows and was throughout the sweetest, silliest, occasionally devilish and always loving-most, of boys. Charlie has seemed more than happy to find himself in his new school and living in his grandparents' house. He has tomorrow off for the July 4th holiday but he would be quite pleased to see the "yallow school bus" driving up to the mailbox early in the morning.
And, while it will always be the Autism Reality Show here at Autismland, this show is ready to become more of a weekly or thrice weekly show. It will never air reruns----in Autismland, something new and noteworthy really does happen every day----and daily posts about autism will be appearing on my other blog, Autism Vox, you can be sure.
But it is time to write the book I have been wanting to write. It is time to write (in another, second book) about disability in the ancient world, in the Greek tragedian Sophocles and in ancient medical writers and philosophers.
It is time for me to stop blogging every day at Autismland.
I will still be blogging daily, and plentifully, at Autism Vox, and will probably be weaving mention of Charlie even more into my posts. I hope you will keep "checking in" here at Autismland. I cannot say enough how much your "checking in" with Charlie and with me has sustained us through a very difficult year. I love writing about Charlie; I want more and more and very much to write my---his----Charlie-book. It is, it will be, the story you already know, with additions from the journals I have kept about him every day since his babyhood. It will not be a story of "recovery." It will be a story about autism.
Charlie woke up early this morning and called for "suit on"!---he wanted back to the beach, and had to settle for the pool at 12 noon. Before that came a marathon-long bike ride and, before that, a scream and a throw of a plate of rice after practising the piano. Charlie smiled and pointed at the high-dive at the pool---"jump!"----but got four steps up the ladder and then went down. The piano lesson went so well that Charlie's teacher is planning to bring a new song for him next week. Charlie got mad a couple of times throughout the day and growled, and was smiling within a minute. Just as I thought Charlie was drifting off to sleep, I was running to find him laughing in the garage beside Grandpa's "white car."
I could not have made it through this year without you.
Or without my best friend, Jim, and a certain boy by the name of Charlie.