After June…

Filed Under (Autism and Intelligence, Behaviours, Joy, Obsessions, Parenting) by Estee on 22-07-2011

“Ma…. M. Ma… M. ” That’s what Adam said to me last night before bed, before he woke with a fever this morning, no doubt having caught the summer cold. It also happens to be Toronto’s record-breaking heat wave. As I wandered in his room with my early morning “gotta wake up” voice, Adam seemed woozy. I sat on the side of his bed and felt his forehead and body. He felt like an oven. There is not a day when he’s ill that I don’t want to take away all his aches and pains.

Last June was a difficult month of transitions — heck the last three years have been full of them. I find it difficult to write when we are going through something because I have to process a lot of my own emotions and ways of looking at life. My convictions are tested. I’ve learned that I’m glad I have some.

Losing an aide worker of seven years, another change in school, a new camp…Adam demonstrated his distress with an obsession with looking behind every door which lead to bolting. When Adam is anxious, his body twitches and he started to lightly nibble at his arm, and sometimes mine. If I had to describe it in my own words and perspective, it was like Adam had to explore everything as if it was a flight response. I would say that this was all about fear and uncertainty. He will able to tell be better when he is able. He is getting more able as he types more to me.

At first, I did what any other parent would do and asked him to stop. Drawing attention to it made it worse. When Adam goes through a state of anxiety, it is hard for me not to as well…like his illness, I wish I could take it away — all his pain. I wish it would stop. As a single parent, I take on the brunt of it too. My parents are a wonderful support system for me as are the people closest to me, but I take so much on emotionally where Adam is concerned. It is sometimes so overwhelming, and I find myself strewn across my bed when he is asleep wondering how I can go on. I find myself in that futile trap of worrying about the future.

Then something clicks. I think of Adam as a person, as I think of myself as a child — all of my fears and needs. I needed my parents, my mother especially, when I was scared or sick. My dad embraced me the times I least expected, like the break up from my very first boyfriend. My mother took good care of me while my dad taught me some lessons about brushing myself off again after life would offer its hits over and over again. I’ve learned that happiness is not a given. It is a gift. Life is about the struggle so it might as also be about how we handle it. I need to show Adam that I am as strong as he will be. He needs me to be.

There are times when I think it so unfair to bring children into a harsh world. I wonder, as Adam will have to struggle through life the way we all do, why I did this to him. Yet nature was stronger than this logic. I wanted Adam as much as I needed air. I cannot imagine life without Adam and without having this level of love and responsibility in my life. Sure, I’m not unlike everyone else that I also imagine freedom. Yet, now that Adam is here, it’s not as important. This is what I made, and what came my way, and I want to make the very best of it.

When I woke up that morning and everything clicked together again, I remembered that we’ve gotten through a lot of phases. I remembered Adam’s smile, even though he wasn’t smiling that much in June. I remembered how much he loves and needs me and how I am fit for the calling. I may have to lie exhausted, strewn across my bed some days, but I know as long as I’m alive, I’ll get right back up again.

Since his new camp began in early July, the twitching abated as did the nibbles on his arm. I learned not to call attention to it, and to provide him with more soothing activities, while teaching him how to soothe himself. Adam uses a steamroller — purchased through Southpaw Enterprises — as a “squeeze machine” which provides him with the deep pressure he seeks. As several weeks have passed, he is more verbal again and the smile is back, even in his latest group camp photo. I try to rub his back and tell him that I understand when he’s frustrated, and he appreciates it.

Adam’s ways of communicating are so diverse. He has motor planning issues, apraxia and catatonia-like initiation issues. These are not motivational in the least. These are real impairments which need understanding and creativity in order to help Adam become enabled.

When people also think that Adam doesn’t understand, I want to show what he can do on his iPad or computer. He is able to demonstrate his ability to answer, usually one hundred per cent on comprehension exercises, with a multiple choice format. I asked his school to do that last year and he was able to answer questions better this way because it is a visual prompt — he has to choose from one out of three of four possibilities. Another way to see this is through his iPad. There are programs (you can start with “Playwords”) that ask children to pick the right word to match the picture or the verbal prompt — some of the words are getting sophisticated. Adam can zip through that exercise like it is nothing. Yet, give him another format, like fill in the missing letter of a word he knows very well, he has some difficulty. He needs me to model several times, the correct way to complete the exercise. Then he’s flying again.

After a couple of weeks of camp, a video of the end of the day “Flagpole” was sent to me by email. I always wonder why Adam points to his favorite activity being “Flagpole,” everyday. It is an end of day camp activity where the entire camp gathers together. In this video, counselors were demonstrating a dance and all the kids had to follow. It was boring at first to watch the counselors on a roof dancing to warbling electronic music. Then, the camera panned out. Suddenly, a small figure to the bottom right looked familiar from the back. I recognized the beige floppy hat and the lean body. It was my Adam following the dance moves and I could tell he was intently watching. It looked like he was having….fun. I was so happy, I forwarded it to all my friends and family. It was indeed the gift I have learned never to take for granted.

Today Adam sleeps in my bed and he needs me around to take care of him. I’m stuck in the house, but I know he needs me, and he loves me. He has just woken as I get up from the other side of the bed. “Stay here,” he says. Don’t worry, Adam. I’m not going anywhere.

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.