The shoes should have been our first clue.
After a perfectly delightful morning —one which began after more than twelve hours’ sleep for Nik and a leisurely breakfast for myself and Niksdad— we began our preparations for a jaunt to the local peach festival, followed by a visit to the park. The pre-departure routine is always the same: “Okay, buddy, time for some clean pants. Bring your toy and let’s get clean pants.” “Clean pants first, then socks, MAFO’s and shoes.”
Nik is always eager to perform this routine; he loves to go out with us. Lately, he’s begun to put his orthotics on by himself —even getting them on the correct feet. He was just beginning to clamber onto the sofa, where I sat waiting with wipes and pull-up in hand, when Niksdad brought over his socks, MAFO’s and shoes. The scream which issued forth from my heretofor sunny child was unlike anything I’ve heard except when he is in extreme and urgent pain. It was the kind of sound which makes my heart race and causes me to drop everything and come running in an instant, certain I will find my child covered in blood.
There was much wailing and gnashing of teeth (to put it quite mildly) until we figured out the problem: the shoes. Perfectly good, serviceable Nike’s which Nik has worn on many occasions though not for sometime. (His other Nike’s were so filthy from repeated outings to the park— the laces were nearly black— that I insistedwe wash them last night; they were still in the laundry closet, slightly damp.) I put the offending shoes on the floor at my feet while Niksdad went to get the still-damp shoes. Apparently, even that was too close for those awful shoes; Nik screamed and jumped off the sofa, grabbed the shoes and ran to the entertainment center to put them on top. That’s were they’ve been sitting for weeks now; it made perfect sense to Nik’s sense of order.
Once Nik realized the “correct” shoes were going on his feet he calmed down. In fact, he seemed quite eager for our outing. Off we went on our merry way. “We’re going to get ice cream first, then go to the park. Ok buddy? Ice cream first, then park.” I repeated that phrase, like a mantra, as we drove. Nik is usually pretty good about changed routines or routes as long as I tell him the sequence several times over.
I should have known that the shoe incident had my precious boy already wound too tightly. As soon as I turned right at a traffic light where we normally turn left, Nik’s tenuous balance shifted and the tempest began. I talked to him in soothing tones as I drove. “It’s ok, sweetie, we’re going to get ice cream first then go to the park, remember? It’s ok. You’re ok.” All the while, Niksdad held on to Nik’s feet so he couldn’t injur himself (or us) with his kicking. I drove with one hand on the steering wheel and one hand holding Nik’s sweaty fingers, gently squeezing to give him some proprioceptive input which I hoped would calm him.
We parked right next to the entrance (God bless our disabled parking placard!) and waited for the storm to abate. When Nik didn’t seem to show signs of calming, Niksdad said tersely, “This isn’t going to work, let’s just skip it.” His frustration level was, understandably, rising with each howl and each kick which landed on the back of his seat. Not realizing that Nik was already overwrought and wound too tightly, I insisted we at least get out of the car and try.
There have been times when simply getting out of the car has shifted Nik’s attention enough that he is able to calm down and we end up having a decent outing. I also felt very strongly that we needed —I needed— to not be held hostage to the autism. We spent the first two years of Nik’s life sequestered away from everyone and everything because we had to protect Nik’s fragile immune system. We’ve spent much of the last couple years isolated from nearly everyone and everything except the occasional family outing. At some point, I felt, we just have to say “Damn the consequences!” and try —just try— to be a part of the very society in which we want our boy to thrive.
Today was not the day for that.
We never made it to the ice cream or the petting zoo. We pulled into the parking lot at the park and Nik fell apart again. By this time, he was so overwrought he couldn’t tell us anything. “Are you hungry?” Nik signed please so we offered him a bite of his sandwich; he thrust it at me and screamed. “Do you want to go play in the park, sweetie?” He simultaneously signed please and shook his head no. I started to hum Mary Poppins songs to calm him. It seemed to work until I stopped. The wailing began again.
We drove home to nurse our wounded hearts and try to figure out what our boy was telling us, what he needed. As we pulled into the driveway —like magic— the tears and tantrums abated and the happy singing began.
Nik has now had lunch and is a very happy camper —singing Mary Poppins and Signing Time songs to his toys, playing with his alphabet puzzles. We may attempt the outing again in a while —or not.
It’s so hard, trying to find the right balance between stretching Nik’s boundaries and honoring his needs. Between giving my child what he needs and giving myself what I need. Trusting my instincts and listening to the voice in my heart that says “We have to try…” The lines are hazy and constantly shifting —like walking on a sand dune in a headwind.
I believe we are at a crucial point in Nik’s communication development: the more he knows he can make himself understood —and the fewer tantrums as a result of that success, the more intensely frustrated he becomes in those instances where he cannot make himself understood. The extremes seem to be farther apart and I feel stretched to my limits straddling the chasm. But I’ll write more about that another time —after I mull it over some more.