Being a family with a child on the autism spectrum can feel like being on a runaway rollercoaster. There are meltdowns. There are fears. There are abrupt jolts and hairpin turns. It gets stressful. It gets overwhelming. It gets scary when your child feels those things and while they look to you for help, you feel lost.
When our son was diagnosed, he was already 5 years old. We had so much catching up to do, I was terrified that if I didn’t move fast, learn whatever I could as quickly as possible, he would slip further through the cracks. There was also ADHD, and with it the lack of sleep, the impulsive mood swings. The motor skills issues. The digestive issues. The social development issues.
Then there’s our son, who skips down the streets, squealing happily to himself as we go run errands. There he unleashes a different kind of meltdown. His hawk eyes can read a name tag from feet away without so much as a blink, and he will greet a store security guard by name, then promise he’ll come back to see him soon. No matter how tough the person wearing the badge, he melts them down like ice cream in the summer sun.
He’s a boy who memorizes quotes from movies and TV shows and uses them at the perfect moment; a boy who can imitate anyone from family to game show hosts, and whose quick sense of humor is so damn funny, I’m sure he’ll have me and his dad using adult diapers sooner than we hoped. Years into this ride, I find myself having a lot of fun along with the jolts. My life as a writer and my husband’s as an animator allowed us many opportunities to create stories, but nothing comes close to the stories our son has helped create.
Now a tween, we asked him to help us craft a comic strip about our life. Ever the clever one, he saw the chance to use his voice and sense of humor in ways he couldn’t otherwise. He approves all the storylines, pitches new ones, and inspires most of them.
This was going to be one of those days, I could tell. Any little bump or graze would make him screech. If a toy wouldn’t stand, he’d yell. My son was on pins and needles. I thought an active day would fix things. We’ll go to the playground, so he could climb and run it out. Since it was a hot day, he can enjoy the sprinklers too.
Getting him out of the house can be tough sometimes, but he went for it. Everything was going great; we came across a local festival. Lots of bouncy play areas and activities, another chance to expel all that energy. He waited patiently on each line for his turn at each activity. We made it to the playground, where he ran through the sprinklers and climbed and played to his heart’s content. I followed around, helping fill up his water gun, an excuse for me to dodge the heat and enjoy the sprinkler, too.
After that, we even went for frozen yogurt. With pop music pumping through the speakers, he couldn’t contain himself. He got up and began to boogie down, to the delight of the other customers and, I, knowing that I would’ve done the same thing if I wasn’t busy eating my fro yo, just sat and enjoyed seeing him so carefree after this morning’s edginess.
To cap things off, we needed to make a quick run to the drugstore. It would be a quick pass to get three essentials, and then we’d go home. It’s one of his favorite hangouts, so he was game. As promised, we got the items quickly and got in line to pay. Then he spotted a stuffed animal toy, this one larger than the one he already had at home.
After saying no to half a dozen other plush toys at a local toy shop on the way to the playground, he heard no one too many times. He started crying. Just as we were next on the cashier’s line, he stomped away, yelling all along the way to the back of the store. I waited for a minute, but it was clear he wasn’t coming back. I got out of the line to find him and called him, but no answer. I found him sitting with his arm in the health station cuff, trying to check his blood pressure and giving me the side eye. It was comic genius, but after a long day of running after him in the hot sun, I could feel my own pressure rising.
I told him if he wanted to get home quickly, he needed to calm down. He protested and got loud again. I told him I had to get back on the line, but he said he needed to sit. I asked him to sit on a beach chair nearby until he calmed down. Thankfully, the line was short, and I was up next. But his shrieks were so shrill, everyone stopped in their tracks. I ran to him. I hadn’t ever seen him have a meltdown like this. My skull was rattling. I told him we needed to leave right then, but he shrieked even louder because he didn’t want to leave.
At that moment, my mind raced, trying to find a way through the noise and chaos. The people gawking, my son unable to stop the ear-piercing shrieks, and I couldn’t get him to leave or to calm down. OK, what now?
I wanted so much to calm him down and not cause any more disruption. But all I got out of him was his confusion: He was angry, but he wanted us to pay for the items and get them home. But he was angry and couldn’t stop yelling. But he didn’t want to go home.
Even though it was a neurotypical reaction to not getting a toy that started this, it was that edginess he woke up with that was there now. It wasn’t about the toy anymore. Neither of us knew what it was about anymore. But I had to get us out of there.
I tugged at him to come, and he continued melting down. I ran as quickly as I could, parked the basket under the register and apologized. I explained he was having a meltdown and had to get him out.
I ran out with him, still screeching, out to the street. The whole way over, he stomped and yelled, begging me to get the basket and pay for the items. I could feel the huge knot in my chest rising into my throat. I couldn’t. Now we had new gawkers outside, and they only had half a story. I held both his wrists and swallowed hard. I looked into his eyes and told him my own fear. “If these people think you’re being hurt, they may call the police.”
His eyes widened. “Am I going to jail?”
“No, Baby,” I said. “But they’re going to ask lots of questions about me hurting you.”
He started yelling. “No! I love you!”
I hugged him hard and, this time, spoke even calmer. “I’m not trying to scare you. We’re going to be OK. But not everyone knows what to do when they see someone screaming like you are. Not even me.”
He looked at me, calmer, but still frowning. “But I’m so mad!” He started stomping and looking to see how I’d react. My mind fumbled for the proper response.
So I frowned back. “You’re doing it wrong. Stomp again. Harder!”
He looked at me, perplexed. He did a half-stomp.
“No!” I grabbed his hands. “Go ahead. Stomp! Stomp harder!”
I started stomping with him, and he followed suit, stomping up and down like we were on a trampoline. His frown began shaking out and a giggle erupted.
“Can we sit on the ledge? I’m tired.”
With that knot in my chest still doing a number on me, it was me who was torn. I wanted to get home already, but I was wiped out, too.
We made our way up the hill to the garden ledge of a senior home and I held him while we rested.
There I tried to get my bearings. I hoped he understood that telling him my fear wasn’t a guilt trip, but my trust that he was old enough to become aware of the way others could interpret things. That I’m as lost and scared as he is, but if we work together, we could work things out. And I wondered if I did the right thing.