I had my very first run-in with the law when I was in the third grade. I had the full experience –a police interrogation, a tearful confession, and ultimately a day in court in which I had to sit on the witness stand and bare my soul to a room full of very stern and terrifying strangers. For my eight-year-old self it was certainly the most traumatic experience of my life so far. But in the end it worked out ok, because I got a dinosaur out of the deal.
Keeping in the spirit of World Autism Awareness Month, here is another book I came across recently that I really quite enjoyed: the boy who saved my life: walking into the light with my autistic grandson
by Earle Martin. As the title suggests, the book recounts the way in which a young boy with autism became the catalyst for lifting his grandfather out of depths of depression. I expected a novel similar to the one I mentioned last week (There's A Boy In Here
) or like my own, a straightforward narrative about an autistic child and how he effects his family. I was pleasantly surprised, then, to find instead something closer to a tone poem.
The month of April has been named Autism Awareness Month, and yesterday in particular was World Autism Awareness Day. Some pretty cool things happened all around the world, particularly with the Autism Speaks Light It Up Blue
campaign. The Empire State Building in New York City was illuminated blue, as was the Sydney Opera House in Australia. I saw a fair amount of activity on both Facebook and Twitter related to autism awareness, and it was pretty nice. And weird. I mean, I'm already aware of autism. A friend of my wife, who also has two autistic sons, commented that it was "Me Awareness Day" and that just about sums up my feelings.
It's funny, I have spent the majority of the last two decades dealing with autism on a very personal level. It has quite literally circumscribed my life. Every major decision I have made since Ben was born has passed through the filter of "how will this effect my son?" I have done my level best to be a good father, and I guess if you ask the people around me they will tell you that I have been successful. But the weird thing is, a part of me feels like a complete failure because I have not gone all Lorenzo's Oil
on autism and spent all of my waking hours searching for a cure. My wife once commented that she thought it was kind of odd that I wasn't more involved with autism support groups or online communities and such. The truth is, I just don't have the energy. And because of that, I feel guilty. That probably sounds crazy, but there it is.
Anyone with any sense in Central Florida knew that last Sunday would be a "very blustery day". Sadly, I am not counted among that group. Ben had been cooped up at home with the the flu the entire week previous, and so by late Sunday morning we were both ready to get out and get some fresh air. I did notice that it was a little more overcast than usual, but I didn't think to check the weather forecast or listen to the radio. Mostly I wanted to get to Epcot to exchange our paper annual passes for the new plastic cards with the embedded RFID chips, and Ben was happily talking about "Epcot... take-a-boat!", and so it was that we headed out to enjoy the day. Neither of us had any idea that we would end the afternoon significantly less dry than how we began.
This past weekend the Orange County Convention Center in Orlando hosted MegaCon
, an annual three day science fiction, comic book, and anime convention. If you have never been to a con, you should really go at least once - they are an awesome celebration of fandom and creativity where you can meet the most amazing and talented people. Sure, there are lots of stars there (this year's convention featured a celebration of Star Trek: The Next Generation, and the vast majority of the lead actors from the series were there), but it is really the people
that are so much fun to see and meet. Some of the costumes are absolutely amazing, and everyone tends to be very friendly and welcoming.
I grew up in the Pacific Northwest where my two major cons were Norwescon
, and I have many fond memories of them from my teenage years into my early 20's. Around the time Ben was born I stopped frequenting cons, just because life got in the way. I decided this year to check out MegaCon because I really missed it, and I thought it would be a good experience for Ben as well. As it turns out, overall we had a very good time and got to meet some pretty cool people. Check it out.
Since my book 3500 came out a few weeks ago (which you should totally go buy if you haven't already!), I have been very gratified by the reviews that have come in. I know I was always told back in my theatre days never to read the reviews, but how can you not? Although it has been nice to see so many positive reviews, the thing I am actually most interested in is the criticisms. Interestingly, I have seen some that essentially say, "he spent too much time talking about himself and not enough about Ben" and then some that boil down to, "Ben's story was interesting, but I would have liked to read more about the family." So in that sense, I think I got the balance about right. Once question came up in a Goodreads review, however, that really caught my imagination: "How did the parents survive 3500 rides?" Here, then, is my answer to that question.
This week I am feeling a little sober and wee bit maudlin, so I will apologize in advance. But for people who do not have direct experience with autistic individuals, I fear that the media has given a skewed picture over the years. If your image of autism is Dustin Hoffman from Rain Man, or any of the other multitude of idiot-savant characters who have appeared in film and television, you may not understand. Perhaps you actually do understand, but you might have the impression that Benjamin is doing very well because of how I have written about him over the years. I try to focus on the positive, and there has been plenty to be positive about to be sure, but then there is the harsh day-to-day reality. Here is a typical 43 seconds from a day in the life with Benjamin. Take a look, and I will catch you on the flip-side.
I'm afraid I don't have a deeply insightful or delightfully funny story to tell this week, but I do have one cool thing that happened with Ben this week. It's a tiny little thing, but it made me smile.
We were in the car going somewhere or other, and Ben was listening to Disney music (I know! Shocking!!). I had let him plug his iPod into the car stereo, and so I was being treated to the soundtrack to Pocahontas. (God, I still remember the night we took Ben to see that movie in the theater, up in Bellingham, WA. Ben would only have been two years old at the time, and it would be the last time he would sit through an entire movie in a movie theater for many, many years.) So anyway, there we are listening to the opening track from Pocahontas, "In sixteen-hundred-seven, we sailed the ocean free...."
As I wrote last week, at almost the last moment before releasing my book 3500
I got an email from New York Times
best-selling author Cory Doctorow
saying he had read the book and enjoyed it. He was just starting his signing tour for his new book Homeland
(the sequel to Little Brother
), and he had read my manuscript while on the flight from London to Seattle. I was (and am!) very flattered by his endorsement of the book, and when I saw that his signing tour would bring him to Florida last Friday it was a no-brainer that Ben and I should go to the signing and say hello.
When I got Ben from school on Friday and told him we were going to the bookstore to meet Cory Doctorow, Ben immediately perked up and said, "Doctor!" You might think it's odd for him to be so excited, but Ben has been jazzed about going to see the doctor for years now - ever since his five-week hospital stay back in 2006. I think it is because he had been in so much pain for so long (a good six months before landing in the hospital), that he firmly associated doctors with finally taking away the agony in his gut from the bile stones and pancreatitis. Ever since then he has been enthusiastic about visiting the doctor at every opportunity.
I have lost count of how many times in the past three months that I have stated, "That's it, the book is done!". This time, however, I am really done. Really! The last few weeks have been one long tangle of proofreading and copy editing, correcting minutia like ensuring consistent casing after semi-colons, correct use of the emdash, proper formatting of ellipses ... It has seemed like never-ending task, but the end result is a manuscript that is as solid and professional as I am capable of producing.