Have you ever been in a store and watched a mom calmly shop with a screaming, fit throwing child in the cart, or being lugged behind? Or, how about the mom who is standing next to a grown child of 8 or 9 who is crying and kicking the floor over something? I am that mom. My son is autistic, and even though we didn’t know that until this year, stores have been a trigger for him since he was a baby.
When he was little, he learned the ends of words, and called his pacifier, “fier’. Which made for interesting stares when he would start crying and screaming for his “fier” in movie theaters and stores. Once he started to scream that I wasn’t his mommy, and when I asked him who his mommy was, he told me it was Grandma.
We have lost him more times in more stores than I can count. He also has ADHD, so he will get distracted and wander off, and forget that he’s supposed to stay close to his adult protectors. He will then, if we don’t remind him, or immediately follow him, become quite upset and tearful as he searches for the parents that “lost” him. We always know where he is, but in an effort to teach him to stay with us, we have wandered around corners and hid just out of site.
Sometimes that has gotten us an earful, but he used to hide, at least now he knows to come looking for us. We finally resorted to him wearing a monkey on his back that was strapped to a leash on our wrist. It was the only way we could ensure that our toddler didn’t disappear out of the store, or through a door without our knowing. He would twist and swing and fight it, and often we end trips in public with one or both of us in tears. The final caveat to our little show is that he has sensory issues with anyone holding his hand, and will cry and twist and scream bloody murder if you hold his hand. It can be the gentlest of holds, but if he didn’t initiate it, you might as well have him clapped in irons and tied to the back of a horse. That has gotten plenty of stares.
Now I’m lucky. My son is verbal, functions fairly well and generally acts his age. We struggle, but often our struggle goes unnoticed or appears “typical” to passers by. I have worked with kids who are not as functional, and who get stares, while their parents get criticism. There is nothing worse in the world than being told you are parenting “wrong”. What is “right” anyway? My husband pointed out today that at least we are there with him. We are not letting our son run free, steal or damage items, and generally terrorize other customers and store employees. We are there, teaching, battling, and enforcing the rules. We could leave him home, or never go out, but that would defeat the purpose of being his parents. We want him to learn to be in public. We want him to learn to be safe. If we don’t take him out and desensitize and teach him in different situations, he would be unable to function as an adult, and that won’t work.
So we endure the looks, the comments, the stares, and the criticism so someday my son can go to the store and buy what he needs safely and on his own. There have been times we’ve left because the behavior was so bad. There are many times where we have fought as parents over what to do, because we didn’t know he was autistic and ADHD, and traditional methods were failing us. It has and still is hard.
So, in light of autism awareness, I want you to be aware of those parents who are with their children. They may not have well-behaved munchkins, but if they are teaching, or ignoring and helping their child to learn to live in the world, please don’t stare. It is polite to offer to help if there is more than one child involved, or if the parent looks particularly frazzled. Encouragement, and thanks for taking the time to teach our children are also appreciated.
Please do not tell me how to do my job. Not even the experts can do that, because every child is unique. Every disability is unique. Children on the autism spectrum don’t all look or act the same. They all learn differently, and have different issues. What is important is that I am there everyday teaching and loving my little boy so someday he will hopefully have the joy of teaching and loving his little boy.
Photo: USACE Europe District/Flickr