Recently, I revisted an old YouTube posting of a 20-20 story about Carly Fleischmann.
I was struck by these words:
“Our brains are wired differently. We take in many sounds and conversations at once. I take over a 1000 pictures of a person’s face when I look at them. That’s why we have a hard time looking at people.” (It’s about 7:40 into the clip)
And then Saturday happened.
It all started out rather fluidly. My son and his dad hang out together while I attend my weekly Weight Watchers meeting. Then, together as a family, we shop, play and go home. A routine Saturday.
Only it wasn’t.
It was St. Patrick’s Day. And about the fifth day in a row of nonstop rain. The mall was packed with people. Just outside my usual coffee shop, there was a yo-yo tournament going on with, at least, 50 kids and adults. The whole first floor of Nordstrom, where we normally enter the mall was under renovation. Everything was out of place. Out of place and crowded. The perfect recipe.
The first signs of the storm came when my son asked his dad for a toy and his dad told him, “Maybe, for your birthday,” This happened in the store holding the yo-yo tournament. My son began yelling, “HAPPY BIRTHDAY!” Over and over.
Yet, his dad took him to the Apple Store while I was waiting in a long line for tea. On the weekend of the new iPad debut. Yes. I found them, past the throngs of people, deep inside the store, where my son was playing at a display computer for children. He was in the process of being pried away, again, by his father, from a “Math Blaster” game upon my arrival.
I was feeling the way I used to, two years ago. Before ABA, medications or help. It’s hard to explain. The best way to put it is like that sharp, sudden, panic-stricken, feeling in your gut when you have lost control, right before a crash.
Still, there was no meltdown. But, like an animal before a storm, I knew it was brewing. And then, my son asked for “Go Toys”, a local toy store, that had recently relocated within the mall. Again, disruption to the normal routine. We took him. Inside, he saw a toy car. One that used to be available in both black and blue. There were only blue ones inside the store.
There was a black one in the window. I took him outside to see it. Lots of people walking by. He saw it and wanted to go back in and touch it but it was in the display window, inaccessible to him.
And that was it.
Crying. Yelling. Shouting colors. Hundreds of people everywhere.
I had bought him a cookie. I remembered being taught in ABA to do “compliance instructions” coupled with rewards for ‘compliance’. The problem was that he knew it too. He began issuing his own compliance orders to himself, “Touch head,” “Touch nose,” and then following through. It was almost like self-punishment. He would yell the instruction, through tears, and then harshly slap his head or his nose.
I stopped that. Instead, I gave him bites of the cookie as we walked back toward the car. I hugged him. I told him I knew there were too many people and it would be okay. I squeezed his hand. I took him on a roundabout walk to the car to avoid people and crowds.
The tears and yelling came in waves. He screamed to wipe his tears, i.e., “clean it!” The screaming, the crying gained strength and faded. It was my job to remain calm although I was not. Inside the car, he asked for a “bottle”. He meant a baby bottle of baby formula. You see, we used to give him bottles up until he was almost three years old to calm him down from a meltdown, pre-diagnosis. Pre-knowing what we were doing or what was going on. (Enfamil, people— please!)
Yes. It was that bad. Inside the car, I put on his latest favorite show, Team Umizoomi. They were trying to determine which part of a pattern (bird, dog, bird, dog, bird, bird) was wrong. As the pattern was recited, through his sobbing and screaming, he yelled, “GREEN! YELLOW! GREEN! YELLOW! GREEN! GREEN!” For each pattern, he was replacing the object words with colors.
We sat in the car until he calmed down. We tried to go in to another store, just he and I. When his dad walked in, again, meltdown. Dad ended up carrying him out to the car from this one.
What was the antecedent? Was it the crowd? Was it processing hundreds of faces? Was it his dad? The weather?
I have no idea. He cannot tell me. I asked him if it was too many people. “Yes.”
I don’t know if that’s true, or he simply could not bear to (or have the words to) discuss whatever it was. We went home, and 45 minutes later, he was bawling in my arms, on the floor, me stroking his head, wiping his tears, hugging, kissing, and comforting him.
He was pressing his hand into the carpet. He said, “Band-aid” I looked at his hand and he had a tiny scrape by his wrist. We got it band-aided and went out again, just the two of us, and had a quiet time without incident.
The evening was filled with his ear piercing, screams of harsh laughter, mean-spirited, throwing of toys, and knocking down a marble racer it took me an hour to build. Two time outs for screaming and I put him to bed.
I can hear the rain outside the window as a write it all down. This is the child who got up in front of a crowd of 200+ people and recited his line for the Christmas play and was proud. The child that plays in Dave & Busters with arcade games blasting as loud as a rock concert, without a care in the world, who Christmas shopped with no problems. Why today?
Was it really the crowds? Was it the combo of renovation, moved stores and crowds? Is he taking 1000s of pictures in his mind as he sees new people and changed objects? Was it sensory overload? His dad? The rain? The tiny scrape to his wrist? How will I ever help him cope if I don’t know what we’re coping with?
I cannot make it better. I can only try to comfort him. And that burns a hole through me that I suspect will, simply, just turn into another scar, in our life with autism.
The song “If” stuck in my head in association with the 1000 pictures. If you listen to the words, you may see a new meaning in relation to being a parent in an autistic world (forget Helen of Troy…)