family support

Autism

1 in 68 children is diagnosed with Autism. Chances are, you know a family that lives with this unwieldy thing, and you know that comes in so many different shapes and sizes.

Our family knows Autism intimately. Eight years ago my cousin gave birth to her second boy; a curly headed chub with big blue eyes. He was so unlike his brother; his brother entered the world loud and gregarious. T was quieter. We would laugh about how he would put himself to bed at 8 p.m. no matter where he was, without fuss. His ways were ordered. His younger sister came quickly after him, and in the midst of all the chaos of 3 kids, all under 5, my cousin and her husband noticed that T wasn’t hitting his milestones. That his ordered ways gave way to meltdowns when they weren’t observed. That he couldn’t be coaxed out of his moods. That he liked certain textures. Once you saw a list of symptoms, there was no denying that he was on the spectrum.

My cousin and her husband wasted no time. T was diagnosed as soon after his second birthday as they could get him to the doctor. T was born in a town and a time where resources were scarce, and the only certainty they had was that the sooner therapy starts, the better. There was a flurry of finding aides, setting aside rooms for therapy space, educating family, joining advocacy groups, googling, reading books. We developed a new lexicon for behaviours. There was worry about what the future would bring. Some people criticized them; some people were afraid. I hope most people were supportive and kind, but I would venture that most didn’t understand all the challenges. And on top of managing everyone else’s emotions, there was the rest of their life; two other small kids who had birthday parties and skating lessons and play dates and all the rest. There was a business to run and a house to keep and an extended family to tend to and vacations to be had.  Life only accelerated for them in the wake of diagnosis.

And yet, it all worked. They made it work. T worked hard, his aides pushed him, we all adjusted. His parents doggedly maintained a life for themselves and their other kids. And somewhere along the way, things started to click with T; his speech came along, he started to hit milestones. There was lots of hard days in between, but he made progress in leaps and bounds. I still remember the pride when T gave me a high five for the first time, when he was 5. I felt like I had been invited into his club. Now, I can hug him and joke with him. He goes to school, he’s got friends. Life is not without it’s challenges, but so much has happened already that we were never certain would. And yet, the goal is not to “fix” him and make him neurotypical; it’s to help him live the best life he can. It is the same goal we have for all of our kids.

This is what we have learned of Autism; it brings out the very, very best in families. It is so hard, but the successes are so much more. When our kids are all together it is mad chaos, but autism centers us; we temper our schedules because T needs us to. It gives me perspective raising my own children, reminding me that life is uncertain but you can deal with anything that gets thrown in your path. Mostly, I see T and am reminded that he is a person; he was the same baby we giggled about going to bed at 8 p.m., the same kid who loves to play Lego and Super Mario. He is a kid; he is not Autism. His needs are a little different from the rest of ours, but that doesn’t exempt him from all the love and respect in the world.

Autism is not a terrible affliction; it is a different way of seeing the world and we are invited to try and understand it. To choose not to is to miss out on all the gifts that individuals with Autism have to offer. For me, that is watching T light up talking about something he loves, or giggling with him over silly jokes. These are relatively normal things with most kids, but from him they feel like a really big present with a bow on top. My cousin’s family lives three hours away, so this isn’t my daily reality, but I am glad to be a part of T and his family’s life. I am grateful for the resources he has and the support they get from their community. I am so grateful that T has a brother and sister who love and support him. I am grateful for our extended family who have rallied around him. And mostly, I am so grateful and filled with admiration for his parents; who are T’s greatest champions.

So today, on World Autism Day, let’s celebrate families who share their kids’ struggles and get them through. And let’s celebrate everyone on the spectrum, because they aren’t problems to be solved, they are people to be loved.

To learn more about Austim, and how to support individuals with Autism, please visit Autism Speaks.