“In the past decade, there has been a significant surge in the number of kids diagnosed with autism throughout California. In August 1993, there were 4,911 cases of so-called level-one autism logged in the state’s Department of Developmental Services client-management system. This figure doesn’t include kids with Asperger’s syndrome, like Nick, but only those who have received a diagnosis of classic autism. In the mid-’90s, this caseload started spiraling up. In 1999, the number of clients was more than double what it had been six years earlier. Then the curve started spiking. By July 2001, there were 15,441 clients in the DDS database. Now there are more than seven new cases of level-one autism – 85 percent of them children – entering the system every day.”
All posts in daschel
Clinician: Can you use “frightening” in a sentence?
Student: *long pause, silent counting*
Student: one thousand two hundred fifteen days ago was a frightening day. [date was 9/11/01]
Quite a few people (very thoughtfully) pointed me towards the movie The Horse Boy recently, as it has been airing on PBS recently. I have yet to see it (just purchased the DVD yesterday) but from all I’ve read and the trailer it looks completely incredible. The story is about a Texas family with an Autistic son named Rowan. He’s pretty high on the spectrum and was struggling pretty severely with every day functioning. His family realized he had a love for horses, and that the presence of the animal calmed him significantly, so they sought out a therapeutic Shaman in Mongolia to work with him. It’s absolutely incredible. If nothing else, the trailer can give you an idea of the struggles associated with living with a child with Autism, and how difficult their pain can be to understand and cope with. I highly recommend checking it out. There’s also a book telling the same story.
Story Corps recently released a book about mothers for Mother’s Day. Included was one of the pieces about Josh Littman, a 12 year old boy with Asperger’s who interviewed his mom for the public radio entity. I heard the radio piece a while back and was very touched by Josh’s curiosity about his mother and his mother, Sarah’s, kind and patient answers. It really feels like the two of them are talking about much bigger issues than what might appear on the surface. It’s all very touching and I have Josh to thanks for showing me this animation video that partners with the radio piece. Read more about my experiences as the parent of a child with Asperger’s Syndrome here.
Daschel was with his dad this weekend so took the opportunity to do some long-awaited Spring cleaning in his room. Because he collects and loves his spiral notebooks so much (he writs about current obsessions in them and files them like a librarian) I knew that dealing with that aspect of the room was going to be the toughest. In the end, you can’t let the Aspie child keep everything … in our cases we were starting to look like an episode of Hoarders because we never wanted to throw any of his work away. So today I went through every piece of paper (hundreds) and every spiral (dozens) and separated them. One pile was going to be trash, the other have moved to the storage box I keep for his childhood memorabilia. I knew damn well that moving this stuff (and reorganizing some toys and books him room) was going to surprise him when he came home, maybe even startle him. Typically he doesn’t do very well with sudden change, especially if it affects his projects. Today actually went pretty well, though. I walked him through the room and explained each change and why it had changed. He noticed immediately that certain spirals and papers were missing, but handled the explanation well and see pleased (even proud) that there is a bigger box that all that stuff goes to for Mom to keep forever. All in all it was a good day – we took a situation that could have caused a serious breakdown and turned it into a positive situation. I have a feeling he’ll be bringing me papers for the big bin on his own now, instead of just piling them up on his desk miles high.
He hasn’t noticed the states puzzle with five missing states is gone yet. I will face that battle tomorrow, no doubt.
I’ve been writing at this blog for years. When I first started, I was living abroad and had an infant son at home with me while I worked on freelance design projects. Most of what I wrote about at that time involved him. I don’t know exactly if I was a mommy-blogger, because I always touched on music and other things, but I definitely made a lot of friends that were parents who could understand my situation and helped me relate beyond the day to day life I was living. A handful of those people are still very dear friends and readers. I’m very thankful for that, and I know that if I hadn’t decided to spend some time opening up about my personal life, I might not have met them.
Since then, Flux-Rad has turned decidedly non-personal. It’s mostly music, and a little bit nerdy web stuff. I like it that way: it’s a lot more personal than it seems on the surface. Who I am and what I do is made up of my work with and love for the indie music community, and my profession, which is primarily (though not exclusively) centered on design. development and best practices. These are things that people who know me see as primary functions of mine. In my community, people know me as someone who is active in and very supportive of the music scene. Or they know me because they know the places I’ve worked. Or they know me because I built them a web site or helped them book a show. Very few people in this town know me because they know my son, or my relationship with him and our situation.
Not that I have a problem with that. I haven’t broadcasted Daschel’s Asperger’s (read more here if you’re unfamiliar, it’s not a bad starting point) to anyone. If people know us and it comes up, I mention it. If we’re somewhere with friends and there’s a situation, I mention it. If I’ve made plans and need to cancel because of a rough day, I mention it. But I’ve never wanted Asperger’s to be the primary thing I’m known for. More importantly, I’ve never wanted to make it the primary thing he’s known for. I’ve always wanted him to be his own kid, to be able to make his own impressions and not be immediately tagged as something a lot of people don’t really understand. Besides, he’s fairly low on the spectrum and there are lots of days where no one would ever know (unless they saw him obsessively working on his staff paper or counting dots in the ceiling) there is anything different about him at all. Shit, there were a few years where I didn’t know there was anything wrong with him at all. It took dozens of ear infections, a prolonged speech delay that we eventually realized wasn’t related to the ear infections, and then tell-tale toddler behaviors and crippling fear of noise, crowded rooms and a few other things to tip off the specialists.
All this to say that I’ve reached a point where I think it might be beneficial for me — and perhaps for others — to start writing about my experiences with Daschel and Asperger’s. He’s seven now, and we’re dealing with a lot of things I know other parents of children with Asperger’s face. Primarily, the public school system. And for those of you who still read this blog, I wanted to explain and give a little warning. This isn’t ever going to be an Asperger’s blog, but I think there might be some posts about my experiences here and there from now on. If other people can identify or get some kind of insight from anything I say, that is awesome. If not, that’s fine too. I mostly just want to be able to use this outlet to finally start talking more publicly about my life, on a slightly different level.
If it’s not interesting to you, by all means move on. Skip over it in your newsreader and stay for the mixtapes and tidbits. I admit, it’s going to be quite the weird blog considering everything I’d like to talk about but hey, maybe there’s another music nerd computer geek who has a kid with Asperger’s and we’re future best friends.
Thanks for reading.