29 April, 2010


Jake as a little guy at Disneyland late at night
We used to spend a LOT of money developing pictures. Capturing Jake on film required expert photography skills combined with the fastest shutter speed and endless rolls of film. It took money,  patience and diligence and perseverance, and faith, and will, and cooperation and effort.

so little
At some point I lost all of those things. and I began to let go of the idea of ever having a "real" family photo. I stopped trying to take a picture of Jake doing normal every day activities. I saved my strength for holiday photos.

Then we got a digital camera, a nice one.

and we started all over again. And we figured out that it wasn't just about the latest technology, or spending the most money, or getting leg cramps, or making sure Jake's shirt was clean.

preschool graduation day
We have a child with autism. We have a child with autism and cerebral palsy, and some panic issues and some migraine issues and some sleep issues and God only knows what else. And one of his "issues", or skills, or (dis)abilities, is avoiding a camera lens, or at the very least he won't tolerate a camera with a person behind it. The reason we had a hard time getting a good picture of Jake wasn't really about us not trying hard enough, or not caring enough, it was just a part of having this special needs kid.

Lucy was still being talked about in weeks in this photo
and I cannot help it, it makes me sad. I want to not want that "beautiful family in white cotton sitting in a field" photo.  I want to not really care that there seems nothing suitable to frame and give a grandparent as a gift at the holidays... or the looming Mother's Day. I want to not notice other families' adorned tabletops and hallways, lined with school photos, each one a masterpiece, a moment in time framed and hung for all to see the missing tooth, the self-styled bangs, the galliwampus shirt collar.

We don't really have those moments. My sister is a photographer by trade, my husband has captured amazing pictures, and many of the rest of the family are prolific in our clicking so as to produce at least some good shots if only by the grace of statistics...and still we cannot capture him. When we do get a shot, it is never with a straight on look. I just do not ever get to really look at my own son. Not since he was an infant, when, as irony often deposits itself into my life, my son demanded constant eye contact or he would fuss and fuss; he was so intense, and I would just stare at him for hours.

Jake at Dream Machines
What I would give for just one hour with those eyes again. I tried this weekend when we went to the Dream Machines event on the coast, to capture him, and his joy. I sat beneath him, next to his wheelchair (which we used for most of the day since there was so much walking and possibility of getting run over by, oh, I don't know, A Monster Truck).
I told him I wanted to take his picture and he started to laugh, and put his hands out in front of him, so I put myself to the side and just put the camera near him, which was funnier to him, but harder for him to avoid.

Jake thinks I am hilarious
I realized another thing as I was clicking furiously, knowing that I would need to delete 80 or 100 photos for every one I found that was worth viewing. I realized that Descartes' younger sister hates to be photographed, and Descartes doesn't really like it all that much either. This is foreign to me, since I grew up in a family of narcissists (and I say that in the nicest way, my dear siblings). I don't remember ever being shy for a camera unless I was in a bathing suit, or wearing the fat suit of adulthood. We hammed it up, and leapt in front of each other and put on tin foil hats or dramatic big, poofy, curled hair just to be seen.

So perhaps there's another dynamic I hadn't thought of before, one that isn't so tragic and dramatic. Perhaps Jake just doesn't want his picture taken and is being a pain in the but like any kid who doesn't want to make a nice smile or stand still or wipe their face for a photo. Maybe he is just different than Lucy in a very normal way. She is a dancer, an orator; she poses, and waits for the shot. Maybe it's okay that he watches, and laughs, but keeps his distance from center stage.
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