By the time my youngest son was three months old, I knew something was different. He didn’t sleep like my first two children slept. He didn’t respond to me like my first two children did. He stiffened his body when I held him. (I held him anyway.) He didn’t look at me or follow objects with his eyes.
As he grew, he’d go from peaceful and happy to banging his head against the wall. It was disturbing and confusing. In the middle of winter, he’d remove his clothing. I stopped going out in public places for fear of judgement. I wondered what I was doing wrong. When he was nearing his third birthday, I was sure he was deaf. He didn’t talk, and he was becoming more and more frustrated with his world. The pediatrician told me he didn’t have a hearing issue and referred me to the school district for testing. After a series of interactive tests, I learned my son was on the autism spectrum.
When I think back to those days, for a moment I feel that exhaustion all over again. The diagnosis brought a combination of relief that we finally had an answer and fear. There were so many unknowns. All I knew about autism was the extreme stories that had been made into movies. Was this our future? I read books, attended classes, and sat behind the one-way glass in his special education classroom, observing the teachers and how they taught him. I figured if I implemented their teaching style at home, he would have consistency in communication and he would learn faster.
I was right. It worked. My son was saying short sentences four months after entering the special education program. I knew this kid was smart. He just learned differently than most.
That’s the thing. We all learn a little differently from each other, but it’s more extreme for those on the spectrum and therefore stands out, putting a un-needed spotlight on their differences.
That is one of my biggest frustrations. We still have friends who think he is mentally slower due to his label and the way he started his road to education. My “mother bear” instinct wants to bite their simple little heads off and let them know he’s probably getting better grades than their children. But… I refrain.
A long time ago I decided that it was up to my son to prove them wrong. I wasn’t going to be easy on him. I wasn’t going to put limitations on my expectations. And I began introducing amazing people in history to him who were also on the autism spectrum. People like Bill Gates, Mozart, Temple Grandin, Dan Aykroyd, and Albert Einstein, to name a few. With trailblazers like this in the club, why would I limit him?
One of the best decisions I made was to tell my son he was on the autism spectrum shortly after he was diagnosed, and from that time forward it wasn’t a taboo topic. If it’s not treated like a negative, it won’t be a negative. This has created an environment for easy and confident conversation for him and for me as a parent. I love that!
So, what does the autism spectrum look like now that my son is thirteen? Well, he is a pretty typical thirteen-year-old. He loves video games and building things. He is extremely social and has a quality group of friends. At school, he has integrated into the “normal” classroom setting for most of his classes and has a study hall where he can ask for help if needed, but he is very particular about getting homework done at school and is doing quite well. He played soccer in the fall and is on the school swim team this Spring. He complains when it’s time to go to bed. And he argues that he doesn’t need to wear a jacket to school. If you met him, you would never guess he had a tough beginning.
Do I see autism in my son now? Yes. It looks different than it did when he was little, but it’s the same root issues, mostly regarding change. He likes his routine to stay a certain way and doesn’t want it messed with. Things go smoother if we can warn him ahead of time of changes. I do change his schedule on purpose, because “routine” isn’t always the way life rolls. We have to adjust and adapt, and I see it getting easier and easier for him to adjust.
I’ve learned so much from being a mom of a kid on the autism spectrum. I used to be a very judgemental mother. I thought I knew how everyone should be parenting their children. Now, I see a mom in the grocery store with a kid who’s having a hard time and I figure there’s probably something more to the story and mind my own business.
Autism is on a spectrum. That means it looks different in different people. People with autism have a wide variety of capabilities. If I could go back to the time when my son was first diagnosed and gave myself advice, I’d say, “Take a deep breath. You can only read one book at a time, you need your sleep, and you will be amazed at the accomplishments your child will make in one year’s time.”
For me, autism is no longer a scary word.
For more information on Autism Awareness Month and how you can support families and individuals affected by autism, please visit autismspeaks.org