Thursday, October 07, 2010

Food for Thought (2 of 2)

So here is the thing with Ceeya, as we call her. There are all these neat little boxes that “specialists” want to put her in. She has dyspraxia and neuromotor incoordination. She is oral defensive. She is a resistant eater. She needs helps with her oral-motor skills. She is tactile defensive. She needs help with her fine motor skills. I could go on.

I could. I could make myself crazy looking up stuff online (okay, so yes, done that) and reading books and articles until my eyes bleed (almost), and worst of all, feeling unable to share much of what we’re going through because (a) some people really don’t believe in all this mumbo jumbo and say, “there’s nothing wrong with her, she’s just sensitive…she’ll eat when she gets hungry…you’re spoiling her.” (No, it’s true, some people say some bullshit like that. It’s astoundingly helpful, just as much as you might imagine.) Or (b) some people will really want to get all in your business and ask all kinds of questions, most of which are not really all that helpful, under the guise of being helpful. “Have you tried X?” they ask. “I heard that helps with autistic kids, my friend’s niece had a baby who had that.” As I prevent my head from exploding into smithereens via the sheer force of my will, I explain that Ceeya is not autistic. And as much as you are trying to help me, I am relying on paid professionals who, you know, have some kind of training in this area? To help come up with some kind of treatment? So as I do not run screaming off into the night?

I also steadfastly refuse to share this with my mother because inevitably she will latch onto Ceeya’s diagnosis and conclude that she has suffered from the selfsame thing for lo these 60-some-odd years, and that every bad thing that has ever happened to her can be traced back to it forever and ever amen and that it is too upsetting for her to deal with because it makes her think of bad things that happened 50 years ago and how things could have been different if only, so we should never speak of it again but recognize that she is suffering silently henceforth. Let it be stated for the record that I love my mother dearly, but: she has been known to try my patience.

I am tired. I have been dutifully taking Ceeya to occupational therapy once a week, which I now have to submit claims to my insurance company for and struggle to get reimbursed for. It is a dance that I never wanted to learn. We have been doing all kinds of activities with her—exercises to strengthen her grip, a vibrating toothbrush to desensitize her to oral stimulation, putting at least one unfamiliar food in front of her at meals and leaving it there even as she screams in horror. We play blocks with her, build Legos with her for fine motor coordination, bounce her gently on the bed to help with the vestibular issues. I know it will take time. It will take time.

Tonight around the Blah Blah Family table, we were building taco-burritos for dinner. Ceeya watched as we each spooned ground beef, and then rice with tomatoes, and then lettuce and cheese on our tortillas and rolled them up. She asked for rice, and lettuce. She carefully, methodically, spooned them out of the bowl and plonked them next to her shredded cheese. She didn’t eat them. She arranged them on her tray, and then asked for more.

This is nothing. At the same time: this is huge. She is playing with unfamiliar food. She is not eating it, but she has decided that it is not scary. It has a place on her tray, where the rest of her food goes.

It will take time. Lord, I am tired. But tonight, this one small thing made me happy.


Bridget said...

Stick with it. I bet that brain of hers is processing it all much more than we could ever realize and all the hard work you are doing with her will pay off in the long haul. My daughter doesn't even have an official diagnosis and what you've written is so familiar to me it's scary.
Only deal with those who you feel you can confide in and screw the rest. You know your kid best and honestly we only have so much room in our lives for "other people's opinions". Thank you so much for sharing this, Lisa.

{{{{sending good thoughts to ya}}}}

Lisa Blah Blah said...

Thanks, Bridget. Sometimes I feel sure it is working and sometimes I just want to throw my hands in the air in surrender! But I can see changes in her and interestingly, I feel this has also changed my relationship with Viva and Viva's with Ceeya--both in a very positive way. I feel like we are closer than before, though I would never have thought of us as "not close" before all this.
I will continue to share here as we go, and thanks again for your good thoughts!