I want to tell a story about a week whose hours passed anxiously and left me feeling as though I woke up somewhere I had not intended to be.
It began with a couple of statistics I came across a year ago.
I wish I could unlearn this. It doesn’t loom, not exactly. It is more like a dark cat that saunters through our weaker moments. A pause, a glance, a reminder. It takes my breath away. But a pause is just that and life resumes its normal speed, and the creature wanders away…
I don’t think about these numbers more than I should, more than any parent in our situation would. I don’t think about them at all when it is bright and sunny and we’ve had a great week at school. But the weather turned cold and dull last Sunday and I knew they would come creeping through. Feelings of distance and uncertainty followed me around the rooms of our house where we were stranded inside, looking out the windows, waiting.
I tried to find my way out with friends, but the air was stifled, I couldn’t connect. It is hard for me to keep up with conversations about home décor and crock pot recipes, when my mind is suspended elsewhere: Who do I need to speak to next, are we out of intake? Has our case manager been assigned? What is the next step, what’s working, what’s not working, the ABA bill was how much this month? I am a rodent on a wheel, spinning in circles, desperate for answers. I know I need this, camaraderie outside the world of special needs. And I remember being there, lost in a Color Book. Can’t I go back? Paint is important. I believe that. Don’t I?
It rained all the way home.
Tuesday was our parent support meeting. The woman that leads the group is the mother of a kind and beautiful 9-year-old girl. This has been a big month for them: Georgia legislators pushed through the bill, named for her daughter, which will require insurance companies in the state to cover autism therapy interventions for preschool age children. They have improved the lives and the futures of no less than 32,000 families. That was last week. This week the same girl was bullied by some kids at her school. Because she has autism and an Instagram account. The sentence purrs and the week moves slowly.
Friday I went to the school to have lunch with my daughter and a nice-enough boy sat next to us and opened his lunchbox. He looked at me and said, “She has to ask the teacher to help her play with people at recess and if they don’t want to play with her she cries. She cries in music, too. She puts her hands over her ears and cries and cries and cries.” And then he turned back to his lunch and went on about his ham and cheese. And the numbers rose out of nowhere, circled my legs, told me to get her out of there, take her home to where it is safe and dry and there’s no one to tally up what behaviors are inadequate, unacceptable.
I should have told him about last year, how much better we are now, how much progress has been made. I should have explained that the music hurts her, like needles in her ears. She told me once it feels like it is squeezing her brain. I should have done sensitivity training with the classroom. Read them a book that explains what a sensory processing disorder is and how a perfectly lovely day can be ruined by escalators or polyester or people singing in unison. I should have bought her those headphones.
I am angry. With the boy and the cat and everything that is easier than this. I called my mother and got a pep talk. Everyone has unshared problems. It is all relative. Keep your chin up.
Saturday: Dog grooming day. The clippers hum brilliantly and the fur falls off in downy clouds. It’s the closest thing I have to a Zen garden. I was covered in hair when I finally stood up an hour later. Our toddler had been playing with the tufts, chasing them as they blew haplessly around on the porch, so I took him upstairs to shower with me. There we were, standing under the water, and he was laughing and laughing and laughing. And I could feel it: the week and the numbers and the words breaking apart into a collection of sounds and shapes that don’t mean anything without knowing what time will make of them. I see my son’s smiling face as he looks up toward the pressure and warmth of the shower. He is perfect, beautiful, happy.
I think: how well we are represented by the person we become when we quietly let go of superstition and the things that keep us separated and hold tightly to what is real and binding. We are more than pieces of life ambling through the weeks in a year; we are parts of a whole. And special needs are more than headphones and tears at recess, they are the landmarks of parenthood, of family, humanity. I pick my little boy up and hold him. The water is hot and wonderful. I could be melting.
I hear my daughters in the room next door, having a very neurotypical conversation about kittens and bracelets and bugs in the yard. The playground is miles away and autism is a small box filled with six letters and the memories we are learning from. I’m wrapping it up for you, our gift, our special needs. I don’t know what they will mean to you but I know they will be entirely relative.
It is important, all of it. Colors worth sharing.
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