When James was diagnosed with Sensory Processing Disorder (SPD), it was explained to me like this:
Imagine he is placed in a dentist chair along side a "typically developing" child. The chairs drop slightly, unexpectedly. Both children would have the same reaction of surprise and fear. If it is repeated numerous times, the typical child would be less affected each time. He would anticipate the movement of the chair and adjust accordingly to plan for it. James' reaction (or any other child with SPD) would be just as extreme each time it happened.
No matter how many times it happens, if feels exactly like it did the first time.
When a child is unable to regulate himself, it is difficult for him to explain why. When that child also has an autism spectrum disorder that limits his ability to communicate feelings, he can quickly become distressed.
James has always hated the beach. He screamed at the sand, the water, the sun, the smells, the seaweed. I always dreaded beach trips. The "fabulous family vacation" where we spent our days trying to console James, not understanding exactly what was going on in his head, but knowing he was both terrified and horrified, leaving the beach moments after we arrived or holding him the entire time.
As he grew, he still hated the beach, and each season brought the same anxiety. I couldn't bring both boys by myself because of James' reaction, so our attempts to re acclimate him to it were few and far between. We'd finally get to the point at the end of the summer where he could tolerate it, and even start having fun on the edge of the surf (although he'd never actually go in). Then we'd start all over again the following year.
Last weekend, we brought the boys to the beach to visit good friends with boys close in age to ours. I was on alert as soon as we stepped on to the hot beach, expecting the worst. He complained a lot, but there was nothing to indicate that he was in distress. I started to relax a little bit as he started running back and forth on the edge of the water, playing with the others.
The other boys wanted to swim out to the floating dock, so James and I stayed behind and watched them swim happily away with the other grownups. I tried to engage him, but got nothing. Finally, I gave up and let him play on my phone, and sat there wondering if we were ever going to get past this point, or if he would end up always playing video games in a chair, me sitting beside him, both of us feeling left out.
Then, I remembered a time when I wanted James to tell me what he did at school and he wouldn't answer. I gave up and he started to draw. While he was drawing elaborate mazes, he started to answer the questions I had asked. They were simple answers, not incredibly insightful, but they were answers. I remembered thinking at the time that he was able to answer because the pressure was off. He was busy doing an activity that calmed him, and could talk down to his mazes, instead of having to look at me and try to read expressions he couldn't process.
I decided to try it again now that he was occupied. I didn't expect much more than "I don't want to talk about it" when I asked why he didn't like the water, but the words that poured out of him blew me away.
"It is too big, I'm scared. It is too deep. I can't see or touch the ground. There is seaweed in here. I don't like it to touch me. I like pools better, I can see what is happening. I don't like big pools, only little ones. And I don't like sand. It feels hot and scratchy under my feet. I don't like to walk on it. I like to walk on the ground more. I like the ground around the pool better, it doesn't bother my feet."
His feelings came spilling out like we talked about our emotions all the time, yet it was the first time he'd ever been able to tell me WHY something upset him.
James was able to tell me why. If he can continue to communicate why, then we can help him find the tools to regulate himself.
And when the chair falls again, although it will be surprising, it might not be distressing.
He runs to make his mind still, to organize himself and to get rid of the noise from this loud, confusing world. The more he's moved, the more he's introduced patterns and rhythm into his routine. Laps around the house are a daily ritual. He's made it more complex as he's developed, but the basics are the same. There is a pattern of movement -- specific foot patterns based on whatever song or chant he chooses to accompany the run, and he can not be stopped until he is ready to be.
This is James, and this is our story.
This is James, and this is our story.