A day in the life

It was a beautiful summer day – sunny with a high of about 75 degrees – a perfect day to take my three kids to a nearby amusement park.

My oldest daughter is an adventure-seeker who loves everything about amusement parks. No roller coaster is too thrilling, no ride is too extreme as far as she’s concerned. She had first visited this particular park while attending summer camp a few years before and frequently begged to return.

My youngest daughter was only five years old at the time, but there were rides for younger kids that she could enjoy, even if she couldn’t ride everything like her older siblings.

That leaves us with my eleven-year-old autistic son. I was worried he would have a hard time at an amusement park. Too many people, too much sensory stimulation, too much everything. Yet, at the same time, I longed for him to be able to enjoy this place that is tailor-made for children, a veritable heaven on earth.

There are so many things he misses out on because of his autism. He doesn’t spend his free time with peers. He doesn’t leave the house very often, except to go to school. He doesn’t play sports or music. He doesn’t go to the swimming pool or ride his bike in the summer. He doesn’t enjoy trick-or-treating on Halloween or watching fireworks on Independence Day. He doesn’t enjoy parades or concerts or birthday parties or sporting events or school assemblies or pep rallies or really anything where a lot of people are gathered or there might be loud noises.

All I hoped for was for him to be able to enjoy an amusement park like any other kid. I knew there was a possibility that things would not go well that day, but I tried to remain optimistic, so I nervously hoped for the best as we jumped in the car and set out for the day.

On one of our good days, my son made a beautiful new friend.

The admission fee for all four of us to enter the park totaled $175. As I paid for our admission, I secretly hoped this would be money well spent.

We decided the Ferris wheel would be the best way to ease into things. Although the ride was smooth, I can’t say it went smoothly. My son didn’t enjoy being that high up in the air, and felt uncomfortable with the car swaying back and forth when the ride stopped to let other riders on and off.

Nearby there was a ride that flipped its occupants upside down and suspended them for several seconds at a time. His older sister had ridden this before and was excited to take him on it. As I watched them being flipped upside down at high speeds, I could see the terror growing on his face. He survived the ride, but was clearly upset by it.

Next we all tried a ride that looked fairly harmless. This one wouldn’t turn us upside down, but there was so much centrifugal force involved that it was almost impossible not to slam into the person sitting next to you. None of us enjoyed this ride except my oldest daughter.

The bumper cars were nearby, so we headed over to take a little break from the thrill rides. It seemed tame enough. Little did I know that this would be the beginning of the end of our adventure that day. The two girls rode in a car together with the oldest steering. My son got his own car, but quickly became frustrated by people running into him and not being able to get the car to respond the way he wanted. While other cars whizzed by, he stood up, climbed out of his car, and walked off the floor in frustration. I managed to keep him from storming off through the park while we waited for his sisters to finish. In the meantime, he kicked over a large garbage can that hit a man standing nearby. Mortified, I apologized profusely.

He was able to calm down enough as we walked over to the least dangerous-looking roller coaster. It was a wooden one with no big drops or upside-down loops. We all stood in line together, but when it was our turn to climb into the cars, my son decided he didn’t want to ride after all. My oldest daughter ended up riding by herself while the rest of us stood near the exit and waited for the ride to finish.

As we stood there waiting, we saw a guy walk by with a gigantic stuffed black panther, which he had won by playing one of the carnival games. Before we go any further, understand that my son was obsessed with black panthers at this point in his life.

He begged to play for a chance to win the big black feline. In order to win the prize, he had three tries to knock down a stack of bottles with a bean bag. The first try was a swing and a miss – strike one. Second try, strike two. Third try, and he was out. Literally. Cue the meltdown of all meltdowns, which had been building all day, but this was the proverbial straw that broke the camel’s back.

In a state of distress, he took off running and I entered panic mode. One child was running away from me as fast as he could, one was somewhere hurtling through the air on a roller coaster with no idea of what was happening down on terra firma, and the third was too young to stay anywhere by herself, least of all an amusement park.

I don’t know how many people witnessed this episode and I stopped caring what those who did thought. No one that I noticed stopped to stare or comment on what must have appeared to be strange behavior. Regardless, other people were the least of my worries. I was solely focused on keeping all my children safe and in one location.

Thankfully the roller coaster ended and my oldest daughter found us in time for me to tell her to stay with her younger sister while I chased down their brother.

He was heading for the parking lot, which would do him no good because our car was locked and I had the keys. And we couldn’t just leave his sisters there in the park. How would it be fair to them to leave so early when they had barely had a chance to experience it? What about all that money I had spent to get into the park? I had to stop him before he passed through the gates.

Somehow I managed to catch up with him, which made him even more unhappy. Whichever direction I was going, he went in the opposite direction. Fortunately I had a slight size advantage and was finally able to restrain him. I wrapped my arms around him and squeezed.

While the outside observer might think that I was simply trying to keep him from running off again, this maneuver was more than that. During a previous meltdown he had experienced several months earlier, I had learned that he responded well to what’s called deep pressure. Many autistic people find it helpful for someone they know and trust to intervene by squeezing or hugging them firmly when they are feeling overwhelmed, overloaded, or extremely anxious. This pressure has a way of restoring order and providing reassurance, which helps them calm down more quickly. Those who don’t like to be touched can find relief from compression vests or weighted blankets.

When she was a teenager, world-famous autistic Temple Grandin observed that agitated cattle were calmed by squeeze chutes. Although she craved hugs from other people, sensory issues made them intolerable for her. As a result, she invented a “hug machine” for herself in order to imitate the same calming effect when she herself felt overwhelmed and anxious. And so deep pressure therapy was born.

Left – cattle squeeze chute.
Right – In the eponymous biopic, Claire Danes portrays Temple Grandin in the hug machine she invented.

After several minutes of applying deep pressure, my son was finally able to calm down. We were both exhausted – physically and emotionally – and knew that our day at the amusement park was over. While the girls were rightfully disappointed, they understand all too well that things like this happen in the world of autism. I held it together during our solemn car ride, but had the ugliest of all ugly cries after we arrived home.

The worst part of all this? Admitting to myself that, no matter how much I try, my son will never experience life in this world like a normal person. That’s a hard pill for a parent to swallow. And fear of the future – what if something like this happens to him when he’s a fully-grown man? I was able to overpower him that day two years ago, but today he’s already taller and stronger than me. The odds of me being able to restrain him by myself now are quite low.

Day-to-day life is often a roller coaster when you live with autism. Most of the time, we are able to just sit back and enjoy the ride, but then then the ride operator flips a switch and suddenly we’re hurtling head-first toward the ground at break-neck speed and everything is turned completely upside-down.

Just like a ride we don’t enjoy, our family has learned to get through it and be grateful when the ride comes to a complete stop. And, thanks to my son, I am appreciative that I don’t have to ride any more real roller coasters.