Yesterday, I read an article from journalist and autism advocate Liane Kupferberg Carter, writing on the Huffington Post. In “Autism Acceptance: Don’t Stop Believin’,” Carter describes how her autistic nineteen-year-old son had gradually transformed – from a little boy terrified of haircuts into a young man who asks for a trip to the barber often.
Her story resonated with me, because at 15, our son has already shown us, gradually and through much hard work, just what he can do when given the supports he needs to succeed.
Just as I was contemplating the importance of patience and belief, life presented an opportunity to test the theory that progress is always possible.
It began when my son asked to watch his Toy Story DVD for the five-millionth time (Thank you, Pixar, for creating brilliant animated films that don’t make me want to stab myself in the ear. You’ve got a friend in me.)
The previews started…and then, a blank grey screen. After a moment, the screen switched back to its blue stand-by.
The dreaded words “the disc is dirty” blinked on and off in an accusatory font.
No problem, right? We’ve had this dilemma before – the combined result of watching a DVD five million-and-one times and allowing the kid with the grubbiest fingers to handle the DVDs himself. Eject disc, clean it off, re-start.
This time, though, no amount of cleaning would fix the problem.
His anxiety increased each time I tried to clean and reinsert the DVD. The player would act like it was starting, and then revert to blue and scold us to clean the disc.
Changes in routine are still rough for my son – especially when things are broken, and most especially when a favorite activity is disrupted. Life is not as predictable as he would like it to be, so this boy has had many opportunities to practice his coping skills. This is one place where, even though it’s still hard, he has made so much progress.
Sitting on the floor in front of the stubbornly blank TV, he begins to slam himself down on the floor and hit himself in the thighs and arms. He’s agitated, but not out of control yet.
I keep my voice as calm as I can, explaining that the DVD is broken and we’ll have to pick a different movie (one of the several others he’s also probably close to wearing out from repeated viewings).
There are times when I get impatient with his overwhelmed, frenetic reaction to disappointment. I sometimes forget that this is not a tantrum he’s throwing because he’s not getting his way. For all of us, it can be stressful when something that worked yesterday doesn’t cooperate today; he’s just having trouble handling his emotions. If I can set aside my own selfish frustration (why does every single change have to be SO hard?), it becomes clear how much he is wrestling for control of himself. He’s working hard to get it together. He needs an ally in that, not the extra stressor of an irritated mom.
He tries repeating his request. “Toy Story?” Maybe mom isn’t understanding. “Toy. Stor-E!” Oh, you want more words? “Watch Toy Story.”
I grab some paper and write out the explanation. Static words on a page can often help to settle his mind on the key facts of the situation, and to reduce the panic in the moment.
I leave a blank at the end for him to choose a new movie. We read through it together. He takes the pen and determinedly writes: “Toy Story” on the line.
I begin to strategize as I often do, conditioned by years of watching his disappointment escalate unchecked into self-injurious, furniture-injurious, and sometimes mom-injurious fury. Do I call someone who lives close to borrow an unscratched copy? Run to Target now? Find a YouTube clip?
But a vision of a different Pixar character flits into my mind. When the sea turtle Crush watches his son Squirt accidently somersault out of the fast-moving East Australian Current, the clown fish Marlin moves quickly to rescue him. But Crush stops him, saying, “Woah! Kill the motor, dude. Let us see what Squirt does, flying solo.”
Of course, Squirt makes it back to his father’s side, unaided and beaming with pride. (I know. That’s Finding Nemo, not Toy Story, but we don’t discriminate against any Pixar around here. They are all part of the repetitive soundtrack in our heads.)
Crush is right. My kid can do this. Breathe. Explain again. Support. Reassure. Model calm.
I continue to praise him for handling this crisis so well, acknowledging his anxiety and disappointment and showing him one way to a resolution. I list his other favorite movies. Limiting his choices often helps him to not get overwhelmed by too many options, so I take out three well-loved DVDs. He sits next to me, repeats his request to “Watch Toy Story.” He emphatically returns all of movies to their assigned places in the drawer, along with the Toy Story DVD.
And, with effort, he draws a breath and starts over. “Watch The Incredibles?”
By the time Mr. Incredible is using his famed brute strength to stop a train from crashing off its bombed-out elevated tracks, my kid has muscled himself back to calm. We now return you to your regularly scheduled programming.
Patience. Perseverance. Belief.
He pulled himself together, and I didn’t do anything to make it worse. We rewarded ourselves for our efforts with jelly beans.
And later, a trip to Target for a new, yet familiar, DVD.