We spent the better part of last week dealing with bitterly cold temperatures. The one day we didn’t have a two-hour delay for school was Friday. That was, coincidentally, the day when we had the 2-hour early-release due to the weather. On Friday and Saturday the snow fell steadily, and it was cold enough that navigating around town would have been risky. At J’s insistence, we hibernated at home, and yesterday (with more favorable temperatures and a brightly-lit sky) we ventured out for a while. The forecast calls for warmer weather today and tomorrow, dipping back down into the thirties by Thursday, just in time for J’s birthday.
Taking advantage of a small pocket of not-too-adverse weather, we sauntered (yes, sauntered) down to the courthouse on Friday. The petition for guardianship and conservatorship has been filed. A small weight has lifted off our shoulders (it will soon be replaced with a new weight, I’m sure…) The to-do list has several items crossed off, and a few more have been added. J is now the proud occupant of 6 three-ring binders, each one assigned to a different facet of his (official and legal) life. I have become very popular in the local office supply circle.
The clerk at the courthouse told us we have a waiting period of about two to three weeks; we’re thinking that’s the “positive outlook” timeframe. We will be happy to hear anything by March. March, I believe, will be the month when everything we’ve been working on for J’s benefit will fall into place. There are moments when it feels I won’t be able to relax until then…this might seem hyperbolic to all of you, but I am not merely succumbing to melodrama here, I am weighing what it means to be “a parent…on steroids” which is what guardianship/conservatorship look like from where we’re standing.
A few nights ago, during an aching back that wouldn’t let me relax or sleep, I read Eustacia Cutler’s A Thorn in My Pocket from cover to cover. Ms. Cutler is Temple Grandin’s mom, and she raised her family at a time when institutionalizing an autistic child was par for the course. Her book has more answers about how parents can still be themselves in the midst of such upheaval than about how to raise an autistic child, but I found it illuminating nonetheless. Not getting “lost” along the way is not easy.
My record as a parent is spotty at best. I have done my best to not screw it up, but the jury will remain out for a while longer. I don’t know how successful I’ve been at not getting “lost,” but I hope that I still am the person I was meant to be (dear e.e. cummings, I often think of you and your “it takes courage to grow up and become who you really are.”) I don’t know if it is a sign of maturity on my part, but I find myself asking more questions…even of J.
On Saturday, out of boredom, J was asking for food every half hour. It was exhausting. NO was trotted out so often that it was almost let loose and unsupervised. NO, NO, NO, NO…(I can hear Amy Winehouse in my head…which, by the way, is a song J sings along to every time he hears it.) At one point, J got so frustrated that he started stomping on the dining room floor and dishes, bowls, cups and glasses clinked ominously against each other. Off came the hats (this is my only resource at this point…J knows I am commanding his attention fully when I take his hats away,) and down the stairs into the basement level we went. Dada sat on a rocking chair while J and I parked ourselves on the couch, right in front of the iPad.
Up came the Proloquo2Go and I opened the FEELINGS folder. How do you feel, J? HATE, he chose, and I wished I could convince him to pick a weaker feeling but…if that’s what he’s feeling, that’s what he’s feeling. I seriously doubt you feel HATE right now, but I’ll play along, I said. HOME folder and MY FOOD. I WANT NOODLES WITH CHEESE, PLEASE!, he said. NO, I said. Stomp stomp, hand slap, fingers drumming insistently on temple, stomp. Up again came the FEELINGS folder. How do you feel, J?, I asked once more. A LITTLE, he tapped. A little? A little what?, I asked while Dada shrugged his shoulders, feeling as lost as I was feeling in the middle of the stomping, drumming, slapping… Stylus in hand, J tapped for the HOME folder and the MY FOOD folder in quick succession. I WANT NOODLES WITH CHEESE, PLEASE! I was about to say NO…again…for the millionth time, but then J tapped the screen again and…
A LITTLE. I WANT NOODLES WITH CHEESE, PLEASE!
Realization dawned. J was willing to negotiate with us. He KNEW he was asking for food again, and that we didn’t want him to eat to entertain himself, but…he would be satisfied with a small portion of noodles with cheese. I said You just want a little bit of noodles with cheese? The relief on J’s face was evident; he had finally made himself understood. I don’t want you to think that I feed J to keep him quiet, but…I do have to acknowledge that he is making an effort to communicate and to compromise. For this efforts he got a quarter cup of penne rigate sprinkled with cheese, and he was satisfied.
One of the most difficult rites of passage is to learn to talk to one’s parents. Another difficult rite of passage is getting one’s parents to listen, and understand. I think we’re getting there…scary though the thought may seem at times. Ms. Cutler did the right thing, I think…she listened to herself, but she also listened (albeit in ways that were not particularly sanctioned by the “experts” of the era) to what her daughter wanted and needed. I am winging it…I think I might yet take flight…which means I still can crash or crash-land. I guess I could do much worse…