Happy Valentine’s Day lovers! Hope you have/had a romantic interlude with your sweetie. My wife and I drove from Berkeley to Pleasant Hill with Dar so that he could see a neurologist for the first time in six years. As I wrote last week, we’re worried that he might be having seizures.
Oy gevalt, the intake forms. I hate having to relive the pregnancy complications again and again. I hate having to relive the first two weeks in the NICU. I hate having to explain every little step on the road of horrors, from global developmental delays to MRI to cerebral palsy diagnosis to autism diagnosis to RCEB to ABA to IEP et cetera.
Our waiting room in Pleasant Hill was one of the most beautiful waiting rooms I’ve ever seen. I wish I’d taken a picture. The walls had been hand-painted as a panorama of Mount Diablo Valley in lush bloom, with more poppies and crocuses and wildlife than you’d realistically see in one go. The brush strokes of the flowers were just impressionistic enough. The place really made me and Dar smile!
This is also where I had a conversation with a maybe-13-year-old autistic kid. It was very…movie version of autism. “These are my socks,” she announced to me. “My mother ordered them on the phone.” She even looked like an adolescent Temple Grandin. What blew my mind was that this mother, or someone, had left homegirl alone in the gorgeous waiting room. Like leaving Rain Man alone. I guess Mom trusted the admins, but wow.
Our doctor, who I’ll call Dr. H, resembled David Cross, the person who played Toby on “Arrested Development.” He was one hundred percent empathetic, the kind of person who sincerely wants to get to know you. Reading off the intake forms, he asked me, “adjunct professor? I know that can be very hard.” I laughed that we weren’t there to talk about me.
Let’s cut straight to the good part: Dr. H thinks that Dar almost certainly isn’t having seizures. He watched our videos and he also got to see Dar do a few right there in his office. Now, of course he can’t say for sure. But he characterized Dar’s eye-close-head-shake-finger-arrest as “stereotypical self-stimulation behavior.” Ah, how sweet a stereotype can be!
Whatever these episodes are, Dar is having fewer of them. A month ago he was having more than 100 in a day. Now it’s almost never more than 50. We’re hoping this is just one of those things, like spraying the hose or pouring dirt on the slide, that Dar obsesses over for a month or two and then forgets about. It’s kind of like when you have a neuro-typical child and they get into something and then you buy that thing. Poof! Instant disinterest. Anyway, Dr. H found the reduction encouraging.
Dr. H, wifey and I had larger conversations about autism. Dr. H was happy to accept the record of the MRI and genetic testing that Dar had done, uh, seven years ago when Dar was about 18 months old. However, Dr. H says that technology has improved, and now we can learn new things. We may be able to find root causes of his condition, or ways in which his condition compares to the sufferings of other people with autism. Dr. H was not the first person to tell us that sometimes families like ours are happy to have joined extensive studies; benefits include money and insight.
I’m skeptical we’re ever going to find out anything that leads to any kind of improvement in Dar’s overall condition. I don’t really care about where his autism came from. Dr. H busted out the old “some families really want that closure” chestnut, but…I’m also not paying for my mutt dog’s genetic testing. I’m not paying for my genetic history or filling out those Facebook memes. I love history, but this sort of thing feels more like blame-story. But…maybe.
Dr. H scheduled a 40-minute EEG at Children’s Hospital for Dar. Dr. H said several times that “it’s non-invasive.” He says that if they’re lucky enough to see one of his eye-close episodes during those 40 minutes, he’ll be able to rule out seizures at something like 99.9% accuracy. If not, and if the episodes persist, Dr. H would like to schedule an overnight EEG. It’s just as non-invasive, but it’s a bother, because Dar has to be in their hospital all night. I’d probably have to be there with him. Dr. H would also ask us to try to keep him awake in such a situation. Oh God, and I wait all day for Dar to sleep! But…okay. Sure. We could give him some soda as he started to nod off. Heaven help me.
The doctor certainly wanted to help me. “I want to give you some comfort,” he said to me more than once, in a tone as if we were old friends. You know what? I’ll take it.
If you’re going to drive to Pleasant Hill, try to fashion a good outcome. In this case, we learned Dar probably isn’t having seizures and we made a reasonable plan for the future. Pleasant!