My daughter pitches and screams when there are sharp beeping noises nearby (I dislike fast food places for this), or when there’s a speeding fire truck 5 minutes away. Her hearing is extremely sensitive. The crowds and screeching mechanics of the subway make her cover her face with her hands and cover her ears with her shoulders. She won’t look at me directly in these situations and hides under my arm, making me encapsulate her with my body. I give her my mala beads bracelet to fidget with and a pair of oversized sunglasses to help deal with crowds. It helps a little bit. Even my ten year old son, who outgrew the tantrum / stimming stage at six, does his best to comfort his little sister by trying to get her to sing or count up to a hundred. Sometimes these things work and most of the time they don’t.
When she was tinier, we used to get weird looks. Some people would look offended and others seemed more annoyed than anything at her screams. I would often have people mumble under their breath and some would go so far as to come up to us and either yell at me to keep my child quiet (hello ignorant security guy at Eaton Centre) or yell at my kid directly (usually older folk who believed my child was just being a spoiled brat). Yelling at my kid directly just assured the yeller a well-articulated insult from me. Defending my children has proven to be the only time I could properly say anything anyway.
I could go on and explain how autism isn’t something you can just get rid of by teaching children manners. I could go on and explain how autism isn’t a disease, but rather a different and misunderstood perspective on living in this fast-paced world. I could go on to explain how every day my children get blasted with sounds, smells, sights and situations and they try to sort it all out the best they can in freakishly concentrated minds and overly keen senses. I could go on to tell you how most of the time, it’s just too much and they’d rather shut down.
I could, but I won’t.
On the subway today, my daughter sat beside me and hid herself from everything by nesting herself under my arm. I hummed something I made up to calm her and myself. She senses my anxiety before I even notice it. There were a few people looking at us sympathetically. I could have used those folks when she was smaller. I find it odd that people try to be understanding now that she is bigger when her unusual behavior makes it seem like she’s not altogether right in the head.
When both of my kids were younger, their tantrums were easily dismissed as a result of bad parenting. I felt ashamed and like the worst parent in the world. It got so bad that even when the pediatric neurologist diagnosed both them, I asked them to make sure the data was right. I felt a relief that it wasn’t just my bad parenting (I’m being honest here), and then an even bigger weight came on my shoulders: my kids have autism.
That’s when I stopped pitying myself and my children. I didn’t want them to feel helpless ever, so I began trying to make myself helpful in every situation that involved them. It eventually translated into my way of life individually. Individually, I am a person. As I relate this, I am a mother. I love my children as both an individual who loves these kids and as a mother who loves her children. They learn from me and I learn from them.
As I think about the sympathetic looks on the train and the people that were so quick to judge the three of us on the subway, in the mall, on the street and in the playground, I feel a twinge of helplessness here again. These sympathetic faces don’t realize the amazing things these two people bring into the world. I’m not saying that because they’re my children, I’m saying that as someone who’s had to force herself to notice the minutest of details in their development. These kids are pretty awesome folk. My children are like any other children too. They’re smart and receptive. They’re rebellious and precocious. They read (they’ve been doing so since they were 2), they write, they fix computers, play video games, play instruments and I could go on. My son has difficulties with sociability. He’s extremely shy and awkward, much like I was at his age. He never lets bullying or the cruelty of misunderstandings stop him. He continues to try to make friends and sometimes he’s successful. Those successes are entirely his and that makes me proud.
My daughter could care less about others, unless you have something to offer. However, lately, she’s been looking at us in the eye, using three word sentences and now at eight years old, we’re having our first conversations this way. She likes people one on one and if you can find her building things on Minecraft or Halo, you’ll see that there’s more there in that brain that she rarely lets others in on.
I wish people would open their minds to different perspectives and different ways of looking at the shiny poles, screaming kids, hiding eyes and lights in the subway. Not all of us are wired to know how to say hello. I could go on.