I read this piece as part of a service on the 2nd principle. The names have been changed. I have permission from “Madi’s” mom to post this.
“Good try! Watch my feet, ok?”
“yes” she says, staring out the window
“Madi,” I say, waiting for eye contact that will be fleeting, “are you all done?”
“Do you want to keep dancing?”
She stares out the window.
“rock step step pull step pull” I intone, holding her hands lightly as I do the steps slowly.
Seemingly without ever looking at my feet she perfectly mimics my moves.
“Hey, good job!” I say, probably over enthusiastically, “you did a really good job”
“yes” she says, her only reaction to my words of praise.
Then she flops on her bed, clamps her hands over her ears and starts rocking back and forth on her back.
I turn off the CD player, “are you OK?” I ask, and she reaches her hand out to pull on my arm. No response. She grabs my shoulder and starts squeezing it. “Madi, use a sentence.” “touch.” “Madi, use a sentence.” “I want touch arms” “I want…” I repeat, “I want you to touch my arms” “Good job asking, Madi.” and I start to give her a shoulder massage, which is really what she was asking for the whole time.
Her words all run together, she often drops the last syllable of what she is saying, and her syntax is wacky to say the least. “I want you to touch my arms” sounds more like “iwanyouatouchARMS.”
Madi has pretty severe Autism. I love all the kids I work with, really!, but there’s just something particular about Madi that really captures me.
Part of it may be that she is willing to do things like learn swing dancing.
Please let me clarify – she is not a good student. She doesn’t have much motivation, she tends to clamp her hands over her ears and start digging her nails into her skin if the music is too loud, too soft, or too anything else. In the middle of a dance she will stop, flap her hands by her sides for a minute, and giggle. She never makes eye contact for more than a few seconds. And, while she’s ok with holding hands, she’d really much rather be squeezing your upper arms or, better yet, she’d rather you squeeze hers. She also loves back scratches, the ball pit, joint compressions, and foot massages. She LOVES foot massages.
She’d also much prefer if we could swing dance to Backstreet Boys. But even I have my limits.
I have worked with children and adults with autism, hearing and vision impairment, down’s syndrome, and various psychiatric illnesses, as well as myriads of developmental delays, some with names and some marked NOS – not otherwise specified. At some point it just became routine for me to deal with teenagers peeing their pants, no eye contact from kids, and waiting long pauses for a response to something. I became fluent in the language of behavioral psychology, learning to use PEC Scheduling, language prompting, deep pressure proprioception, and a thousand other little tips and tricks to prevent kids from freaking out. I learned to listen to kids, and to decipher, and when planned ignoring should be employed and how to tell a verbal tic from an attention seeking behavior.
Mostly I learned patience, and how to make a really awkward situation not awkward. After all, the kid doesn’t see it as awkward. That’s ALL me. I learned to say things like, “Wow! Good job not licking the door handle,” with a straight face and, even more impressive, total sincerity. I learned not to think, “this 16 year old can’t put in a load of laundry” and instead think “wow, we made it all the way up the stairs and she didn’t scream once. Awesome!”
My jobs have been strange. And I don’t deny that many are unable to do what simple years of experience have taught me. I’m not magical or amazing, but I do have a deep respect for the children I have worked with. One of my favorite shirts says, “Keep Autism Weird.”
Autism is weird. Swing dancing is maybe not the most perfect activity to teach a teenager who is unable to legibly write her own name. But everyone does strange, weird things. That’s called being human.
Autism is just being very, very human.
“Do you want more dance?”
“Great! Stand up”
“I want you to touch my arms”
So we’ll dance some more. Or we won’t.