ZARA’S MIND
The highs and lows of raising an autistic child.
‘OShe preferred to watch other children from a safe distance — until the singing started. Then she would cover her ears, crouch down and scream
kay, Zara. I have five fuzzy peaches in this bag. If you do everything the teacher says, you get all five. If you do an ‘unexpected’ thing, I have to take a peach away. Got it?”
My four-year-old daughter nodded her head solemnly. She didn’t want to sit with her classmates on the floor. She wanted to sit away from them, on the chairs. But fuzzy peaches are her favourite treat. I know they are pure sugar and food colouring, but it was preschool graduation, and I needed to bring out the heavy artillery.
Preschool “graduation” might sound like an oxymoron, but there we were, in a summery room crammed with a dozen three- and four-year-olds and 20-odd parents. The program involved a video, songs and the handing out of “diplomas” tied with bright balloons. Most of the kids were excited, wearing their best clothes, and eager to get on with the show.
But Zara is not most kids. She has the vocabulary and syntax of a child twice her age. She can count in the thousands, and knew all her colours when she was two. She has a photographic memory; she can (and will) tell you about the blue and purple dragonfly pants she wore when she was a year old. (“you know, Mummy, when I was little.”) She enchants strangers with elaborate stories of her bunnies.
Zara also has less endearing qualities. She can rage in a towering voice if you don’t play her favourite ABBA Cd in the car. She can melt down over the smallest things, including the fact that her fork has “dots” on it. She doesn’t follow simple directions. She runs away whenever something catches her eye, oblivious to the danger of parking lots, swamps, or steep hillsides. She frequently tells other children “I don’t like you” and “I don’t want to play with you” — even if they never asked.
Zara was diagnosed with autism, Asperger’s type, last November. So at graduation, I was nervous. I knew it would be hard for her. I held the bag of peaches in my lap, at the ready. When she cried midway through the video, I went over to calm her down. She sat on my lap until it finished, and then went back to the group, on the chairs this time, where she didn’t have to be so close to the other kids. She sat there while they sang, staring into space, her mouth closed in a frown, her hands clenched at her sides.
At one point, my mother couldn’t take it and started to cry. Zara saw this, left her seat and asked me why Nana’s face looked sad. I said it was because she wasn’t singing, and could she please try. And one song later, she did, waving her arms with the other kids, the sunny, smiling Zara we know and love.
I cried, too. But not because of what Zara could not do. I cried because of how far she had come, in just six months, and how far I knew she could go, if we kept working with her, and supporting her success.
When she was diagnosed, Zara could not tolerate crowds, singing, and loud sounds. I cannot count the times we had to leave soccer class because Zara would yell “Stop clapping!” at parents innocently cheering on their offspring. Birthday parties were a similar torture. She preferred to watch the other children from a safe distance — until the singing started. Then she would cover her ears, crouch down on the floor, and scream.
So for her to sit through a 15-minute performance, in a room full of clapping people, without melting down, without covering her ears, even participating in two of the songs, was quite simply a miracle.
It also represented the culmination of half a year of hard work. Practising “social thinking” exercises, such as looking at pictures of faces to learn to read people’s emotions. Implementing occupational therapy, including the amazing Wilbarger brushing protocol, and a daily “sensory diet” of jumping, spinning, swinging and pressure. enrolling her in a group therapy class to learn to deal with her “bothers” and develop self-help strategies. And switching her from a more structured type of preschool to one that focused on socialization and free play.
There is no way to know how much each of these things helped on its own. But what I do know is that two days after starting the Wilbarger protocol, Zara let me sing to her for the first time in almost a year. I know that dietary changes and supple- ments made her more attentive, that her second-hand mini trampoline was the best $20 I ever spent, and that her “snakey,” a weighted therapy snake I made from a stocking stuffed with rice, became one of her favourite bedtime pals. She adores the Village of Brooklin Co-Operative Playschool, because of its loving atmosphere, and her freedom to “mix the toys.” And she made her first real friend in therapy.
My point is that there is hope for children with autism, lots of it — if you seek help. Parents are often afraid of diagnosis, afraid of labels, afraid of acknowledging that their child is different. And afraid of the work and expense that lie ahead, because it can be overwhelming.
But it is also comforting: you now understand why your child is behaving the way he or she does. The acting out may still drive you around the bend, but you focus on changing the behaviour, not on resenting your child. you feel empowered, and you realize you are not alone. In Zara’s class of 14 kids, there are two other children “on the spectrum.” Autism is everywhere, something our health system needs to acknowledge and treat at the earliest ages if we are to help these kids succeed.
during some of the songs at graduation, Zara’s gaze may have looked vacant, but I doubt that it was. I’ve read that most people with Asperger’s have an “interior world,” a place where they go for comfort when the real world gets too much, or simply because … they can. A place where they make all the rules, where nothing is threatening, but just as they want it to be.
I wonder what Zara’s world is like. I suspect it would feature bunnies who talk, fuzzy peaches at every meal, and ABBA playing all day long. I bet it’s amazing. I hope someday, she can take me there, too.