Consistency

The leaves on the trees are small in the desert. The bright thirsty skies have made them hardy, so they don't need much nurturing. Where the leaves are big they're trying to catch more sun and rain. They need more nurturing. Those plants don't survive here. Not without a lot of assistance anyway.

The little leaves here shimmer like snowflakes against the blue sky. Baby Cale loves to stare up at them with a great big baby smile, and will do so for as long as I'll let him. Meanwhile, I love to stare at him.

I love to watch the shadows of the wiggling leaves on his face, separated here and there by spots of yellow light. They seem to know he needs a little leaf ballet on his face to soothe him and let him know he's not alone. I'm not supposed to let him stare at the leaves. I'm supposed to "KEEP HIM ENGAGED," but honestly, how can I help it when the trees engage him better than I can?

The only problem is that the trees don't fill a cup when he needs a drink of water, don't set cereal out when he's hungry, don't change his diaper or put dry clothes on him or talk to him or help him color or open the container of Legos. And they aren't sitting at the dinner table with him when he screams and throws his food on the floor because he can't say, "all done." I am.

DDD came yesterday to talk to me about the hours of therapy Cale qualifies for. He can get speech therapy, occupational therapy, physical therapy, music, water, and horse therapy. Apparently horses heal autism. "Huh," I said about that as I felt the confusion crinkle form right between my eyes.

I asked about ABA based therapies, which some of the parents I've met at SARRC say their children have qualified for. Some of these children are getting 35 to 40 hours per week of ABA based therapies through DDD. ABA is an umbrella term for a variety of fairly complicated behavior therapies that can help children with autism learn to communicate more appropriately and consequently, behave more appropriately.

One of the hopes is to lesson disruptive behaviors (stimming and tantrums for example) so they don't interfere as much with their ability to learn what other therapists are trying to teach them.

I did inform my DDD case worker that some form of behavior therapy will be crucial for Cale before any of the other therapies will be effective for him, but she said that a child has to be under three years old to qualify for behavior therapy. Well, Cale is three and a half. So my timing is off again. Sounds familiar.

I can just picture a speech therapist trying to work with Cale. "Say ba-ba-ba," the speech therapist will say. And Cale will throw himself to the floor, slap himself in the face, bang his head, and scream at the top of his little lungs. Yup. And this will cost the state $150. per hour. Yet they won't provide behavior therapy. Oh but THANK GOD he'll get "horse" therapy. Shit.

Our only hope is for me to try to learn and implement ABA based therapies myself. I've already started the jump start class through SARRC and right now we're focusing on Pivotal Response Treatment (a therapy under the ABA umbrella that focuses on social communication via vocalization).

This therapy requires a form of consistency much like the green that fills each blade of grass in my neighborhood. I hope I can stay strong for the task.

This is what PRT looks like for Cale right now. The therapist says to Cale, "cookie." If he makes any sound that is filled with intent then he immediately gets a cookie. If he doesn't say cookie (or something) then he gets a cookie waved in his face but not given to him. As soon as he says, "cookie," (or "uh") he gets the cookie. Inappropriate behavior (like tantrums) are completely ignored. This is not complicated stuff.

Cale gets it. He knows what he's supposed to do, and it isn't too hard for him. However, I've been trying to get him to say "drink" all afternoon. I know he's thirsty because he hasn't had any fluid all afternoon. I'm following him around with the cup, handing it to him until he grabs for it and looks at me, then I hold on to it and say, "drink."

Instead of saying "drink" he has managed to send his sister to her room, ears covered, with all of his screaming. He's thrown every small household item we own, broken a lamp, and knocked over all the chairs. And this is after a WEEK of consistent PRT.

Right now, at this very moment, he's sitting on my desk screaming into my face with his big red drippy face and grabbing for the cup. But he still won't say drink (or "du" or anything appropriate for that matter). I'm turning my back on him, writing, and ignoring the little shit until he's done screaming at which point I'll again say, "drink" and we'll start the whole process over again.

It doesn't matter that it's dinner time and I've made nothing. Or that I have two other kids who are hungry, zoning out on the T.V., and need attention. It doesn't matter that the sheets need changed, the laundry needs folding, the dishes need to be done, homework needs to be done, etc. Nope. All that matters is that I hold this stupid cup and wait for a quiet moment to say, "drink.

A friend of mine told me awhile ago that practice makes perfect. I've actually been reciting that in my head today. It's been true in every other area of life, so it's got to be true for this too. What my son may not realize is that my will is infinitely stronger then his. We'll get this perfect. It will either end in him saying "drink" or dying of dehydration. All I needed was for a professional to back me on that for my will to solidify like concrete in a mold.

Cale seems like he'd rather go through hell then try to talk to me.  But I have to remember that it's his disease, not him, that keeps him away. It isn't personal. And my refusal to participate in his bad behavior isn't personal either. He'll figure that out.

I do love the weather in this wide valley of Arizona. It's spring all the time. And right now the Saguaro cacti are making a serious attempt to bloom. The big fat yellow-green buds poking out the tops promise to reveal blossoms I've never seen. Either they've never bloomed (since I've moved here anyways) OR I've never noticed. I'm not sure which. I'm usually too self-absorbed to notice anything on the tops of plants.