Mirror, Mirror on the Wall
I took Jack for a follow-up appointment to the pediatric ophthalmologist last week.
I wish I could tell you it went well. To be honest, I expected it to go well. Once the teachers at Riddle Brook wore their glasses to school and convinced Jack that eyewear was no big deal, he’s been diligent about wearing his steel-blue specs every single day.
(I almost always have to suppress a giggle when he looks at me with them on, because his one eyeball looks enormous compared to the other.)
So when the time came for the follow-up, I thought no big deal. We’re done with all that drama.
Yeah. No.
The night before the appointment he started to ramp up, declaring in a bossy tone that he was not going to any dumb eye doctor. Because his eyes were better! He could see! The next morning—after failed attempts at trickery which included doughnuts, a new playlist, total control over the radio on the drive—I finally had to haul him into the car, kicking and screaming.
He cried off and on the whole way there. For an hour and eighteen minutes, in case you were wondering. Down 93 and through Boston, past the city to Children’s Hospital of Weymouth.
Then he refused to come out of the car. There were more attempts at trickery, more offers of lunch in Boston and Taylor Swift downloads and new art supplies, and finally, more hauling. Once inside, he sneered at the receptionist, “I do not need to be here. I can SEE!” She nodded sympathetically.
Finally, after we sat in the waiting room for a while and Jack kicked the leg of my chair even though I told him a million times to stop it and then an adorable little boy named Alec stumbled in with his eyes dilated and started to shout things like it’s very dark in here really loudly because he also had hearing aids and Jack said stop yelling we can year you, finally, we were called for the exam.
The doctor was very happy with Jack’s progress. She was very pleased. So pleased, in fact, that she suggested we start patching his strong eye right away, and prescribed two hours a day for the next four months.
Jack, who rarely listens in on a conversation that doesn’t directly pertain to when toothpaste was invented or what time Cinemagic opens, looked up from the black plastic eye shield he was fiddling with and said quietly, “No patch. I am not wearing a patch.”
The doctor and I exchanged knowing smiles—well, hers was knowing, mine was more like I don’t know how I’m going to get him to do this—and I stuffed the pile of flesh-colored patches into my purse.
On our way home I suggested we stop at Target and buy a movie to watch that evening with his patch on. My spirits buoyed just so slightly when he grumbled, “Fine. Oz the Great and Powerful. I want that movie.” Great, I thought to myself. He’ll settle down and watch it and it will be fine. Crisis averted and I am the most awesome mom ever!
Yeah. No.
As soon as we walked in the door and I paid the babysitter, I announced brightly that we bought a new movie. And we were going to watch it! In the middle of a sunny afternoon! Excitement. Popcorn. Bustling about for special cozy blankets and pillow pets.
Except for Jack.
“I’m not wearing that FREAKING PATCH!” he screamed and twirled like a tornado wearing an orange striped shirt, clutching Oz the Great and Powerful so hard his knuckles were white.
I pried the movie out of his hands and passed it to Joey like a track star in a baton race, telling him to get it started in hopes it would calm his frantic brother. Then I grabbed a patch, tore off the paper, and managed to seal it around Jack’s right eye. I thought if he could just feel it, try it, understand that it doesn’t hurt, he’d settle down.
Nope.
I can say with certainty that Jack is not aggressive, but the fact of the matter is as he gets older his anger is intensifying, strengthening, escalating. And managing the whirlwind that is my nearly 80-pound son, with all his flailing arms and legs, is becoming something of a challenge.
And even worse is the effect his tantrums have on the other people in our house. I glanced over at the couch, where the rest of the kids were seated, waiting for James Franco to begin his journey to Oz. “Mom,” Charlie said shakily. “Just let him take it off. Please.”
“Jack,” I said, struggling to keep my voice even. “You are upsetting everyone. You need to stay in your room until you feel more in control.”
I followed close behind as he stomped up the stairs, shrieking and sobbing, and watched as he threw himself on his bed and thrust his head under the pillow. I could barely make out his muffled words, but I heard part of his chant, and it sounded something like, look weird I look weird people will say I am weird.
And so, inside the storm there is progress. A subtle—yet monumental—shift in perspective inside Jack’s rigid brain. Slowly, Jack’s realizing that other people see him, and they have opinions different than his own. He is becoming aware of himself.
Leaning against the doorway of his room, watching as he shook his head over and over and over underneath his pillow, I considered what this shift really means. It means his mind of autism is starting to flex, and he’s beginning to understand there is you and you see me. And in the eyes of others, he is glimpsing a mirrored reflection, one that says you are weird and you are not normal.
It won’t be long now before Jack truly understands how different he really is, just how much he is not like the others.
I need all those teachers again, I said to myself. A group, a community, to once again show Jack he is not alone. And then I had an idea.
Maybe, I thought to myself, the real advantage of all the accidental pregnancies and you know what birth control is don’t you and the endless piles of laundry and dishes and snacks is that we are our own community, and we can mirror a normal reflection for our unusual boy. For just a little while longer.
threestairsteps
August 12, 2013 @ 1:15 pm
I have so been there! It looks like he has resigned himself to wearing the patch, but I did want to share what we did when my son had this problem at age 4. There was absolutely no way he was going to wear the patch without 24/7 physical restraints…and that clearly was not an option. We did drops instead to blur his strong eye so the other would have to step up. It was 5 minutes a day of absolute hell, but it was better (for us) than the alternative.
ccariello
August 12, 2013 @ 8:04 pm
We considered the drops….may still have to resort to that as he’s still resistant to the patch, especially if anyone other than family is in the house. Did your son’s eye strengthen?
threestairsteps
August 13, 2013 @ 10:23 am
Yes. He still needs glasses, but he’s out of the “danger zone” of permanent damage to the weak eye. In fact — and this is kind of weird — but I took him to the eye doctor yesterday because he said his glasses were blurry. Lo and behold, his glasses — an rx written in January — were triple the strength he needs. Apparently Risperdal can tighten muscles and has improved his eyesight dramatically. He should only need them for reading and other close work now.
Missy
September 6, 2013 @ 11:23 am
Family as community – that. is. beautiful. And true.
Trip to Urgent Care | Carrie Cariello
February 10, 2014 @ 12:43 pm
[…] of Jack’s progress depends on what I choose to see that day: it’s a good day if he wears his eye patch without a scene, bad day if he’s stimming a lot. Good if he does his homework without much drama, […]