Starting the new school year has been tricky for my son, C, and me. The move to a bigger class, a new classroom and a new teacher has been hard. It’s hard to let him go, knowing I’m not there to protect him from everything. I worry so much about him being judged by others. How much do people really understand? Do his classmates get cross at him because he can’t sit still? Do they get annoyed that he has zero volume control? And my worst fear — is he getting left on his own at playtime because no one want to play with a little boy who can be so demanding and bossy? Do the children all go home and complain about him to their parents? If they do, I hope they try to explain why he does these things and that he doesn’t mean to. But do they actually understand themselves? Are they in a place to explain?
All parents of autistic children want understanding and acceptance, but for this to happen, we need others to know about autism first. I’ve never told anyone at school that C is autistic, and the school can’t say anything. So how can I expect them not to think C is just naughty?
I wrote a letter to all the parents at C’s school to help them understand autism spectrum disorder and hopefully put them in a better position to explain it to their children. Whether I ever have the courage to send it is another matter, but here it is…
My name is Lottie and I am the proud mommy of two little mini-beasts, C and G. I wanted to write a short letter to everyone in the school to explain a little about autism because C is autistic. Some of you many already know lots and others may know very little. Before I go on, please don’t think I’m being patronizing or condescending to any one of you. Autism is a hidden disability you’ve probably heard about, but you might not have direct experience with it.
Every parent wants their child to be accepted by their classmates. They want their child to enjoy school, make friends and be happy. One of my biggest fears is that C ends up hating school. Some children who are autistic end up getting homeschooled because they can’t cope with the school environment. I think this is sad because school can be a super place, but I can also see how it happens. Autistic children might get bullied at school more because other children don’t understand why they behave how they do. That’s why I’m writing this letter — so you have the knowledge needed to understand.
Children who are autistic want to join in, they want to play, they want to learn. But they just need a little more help and support. Many autistic children have sensory issues, which means they can seem rough during play or pushy in the lunch line. Big spaces, loud noises and bright lights affect them, and if they don’t have volume control, they might shout. They can have high anxiety levels and need to be in control, which could come across as bossy and demanding. Change can be extremely hard. They often need a fixed routine and a lot of warning before something happens. Transitioning between one activity to another can be tricky.
When children get overloaded, they often have meltdowns. These can seem like tantrums from the outside, but they’re anything but. It’s when they’ve become so overloaded by what’s going on around them that they can’t cope anymore. As a parent I find these extremely hard because they’re uncontrollable and can result in me being hit, kicked, screamed at and anything in range thrown at me. Never mind the fact that if they happen out in public, I’m judged and thought of as a bad parent.
C is just like any other 5-year-old. He wants his friends around to play, and he wants to go to other people’s houses and play. He wants to go to the park; he wants to go to birthday parties. But these simple activities can have a massive impact on him and us as a family. For example, going to a birthday party can take a whole week of preparation. He needs to know who will be there, where it will be and what will happen. And then once we arrive, it can take him ages to find the courage to walk in. The noise can be overwhelming. The excitement can be uncontrollable. He can manage about an hour before he stops listening to me, starts running around at 100 miles per hour, goes bright red and starts to sweat. These are signs of overload and a meltdown brewing. Because he’s only 5, he’s still too young to fully read the signs himself, so as a parent, I need to do this for him. I also need to help him learn how to manage himself. When it is time to leave? When it is time to go and quite literally sit in a dark room?
He’s already beginning to feel these signs, but he’s still too young to get it, so he doesn’t react in the safest possible way. A lot of autistic children are runners, and when they also have no sense of danger, it can be a stressful mix. When things are too much, quite often he just takes off. This is why if we’re talking on the playground and it seems like I’m only half listening, it’s because I’m watching the classroom door. If I don’t grab C as he comes out of the classroom, he’ll be off. Most of the time he’ll go back to the car and get in it, but if he’s already zoned out, he’ll just run straight past. Cars and roads won’t stop him!
So please don’t think C is bad, naughty or rude. I don’t want you to think I’m asking people to invite C over to play, or that I expect him to be invited to every party. I’d love to have his friends over to play and give him birthday parties but right now, I’m honestly not sure he or I could handle it. He’s doing really well at school, and that has a lot to do with the super staff and lovely children. I’m not after sympathy for either him or me — only understanding.
Thank you for taking the time to read this.
A proud but worried mother
Follow this journey on Family Life and Autism.
The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.
Lead photo source: Thinkstock Images