The story I am about to tell you is one of my most painful experiences as a parent. It happened back in December, but it hurt too much to share back then. I’m talking about it now because when it happened, I thought I was the only one. However, this week I read about two other moms who’ve had similar experiences, so I feel like I need to speak up.
Walmart was crowded that night–very crowded. It was mid-December, just two days before school would let out for Christmas break. ’Bot, Princess, and I were there to pick up a few grocery items and pick out a Christmas gift for each of their teachers. It was something we should’ve been finished with, but sometimes you get stuck waiting on a paycheck.
We shlugged through the grocery aisles first, so that we could spend our remaining time choosing perfect gifts. The twins were very excited. They both had general ideas for gifts, and I was enjoying their enthusiasm. Unfortunately, it was taking much longer than I expected. The aisles were packed with people, and it took several minutes just to walk from one aisle to the next. It was very uncomfortable for ‘Bot, but he was being a real champion. He was self-regulating as best he could, spinning as he walked and clasping and unclasping his hands to keep himself from touching people and things that were off limits. Finally, after what must have felt like an eternity to the twins, my buggy was half-filled with groceries, and we were ready to look for teacher gifts.
‘Bot was up first. His teacher was engaged and moving into a new home. After much deliberation and candle sniffing, he choose a beautiful picture frame–silver–and of all things, a pink stapler (because according to ‘Bot, pink is her favorite color). His inclusion teacher proved more difficult to shop for, and we spent some time looking carefully before ‘Bot’s face finally lit up.
“I know!’ he declared, and he sprinted off towards the front of the store without another word. Princess and I followed. ’Bot operates under the delusion that everyone else shares his thinking. This Asperger’s trait can often be a source of problems, but not that evening. That evening, we simply followed, and we found him in the school supply aisle.
“Mrs. M really loves helping kids learn, so I want to get her these!” ’Bot proudly announced. He was holding a large dry erase board, a pack of dry erase markers, several sets of flashcards, and various other “school” items. While it wasn’t the most inventive gift, I figured if the card expressed why ‘Bot wanted to give her school supplies, then she would be touched. After all, the highest compliment a teacher can receive from a child is the child’s belief that her favorite thing is helping kids learn.
With ‘Bot’s shopping done, we headed to the book section to find an inspirational book for Princess’s teacher. As Princess browsed the books for the perfect choice, I watched ‘Bot. He was no longer preoccupied with shopping. His mind had nothing to focus on except everything going on around him. I let my eyes scan the store, and for the first time, I really noticed exactly how much was going on around us.
We were surrounded by a sea of people, all talking–loudly. Bright, colorful displays were at the end of every aisle and in the center lane of traffic. I became aware of the bright lights and constant movement. As I looked at ‘Bot, I knew that we were in trouble. His little body was stiff, clearly not relaxed. He started to pace around our cart, his eyes darting quickly from the scene in front of him to the floor. Then, his hands began to flap. ’Bot has stereotypical body movements, like most autistic children, but handflapping is not normally one of them. If ‘Bot’s hands start to flap, it’s a very clear sign that he is extremely overwhelmed. I’ve seen him do it maybe seven times in his entire life–always in crowded, overwhelming situations. As I watched, ‘Bot began to pester Princess to “Hurry Up!” He was becoming irritable. We were headed towards a meltdown.
Now, at this point, I need to explain what a sensory meltdown is for those of you who are not familiar with autism. A sensory meltdown is NOT a tantrum, although it can sometimes be hard to tell the difference. However, tantrums are deliberate. The child is aware and in control of what they are doing, and there is a reason for the behavior. Tantrums can be headed off or stopped, either by ignoring them or giving in. Tantrums serve a communicative purpose–as inappropriate as they are. Autistic kids throw tantrums–lots of them. They have poor impulse control, communication skills, and emotional regulation. Tantrums are a part of our landscape. Unfortunately, so are sensory meltdowns.
Unlike tantrums, meltdowns do not happen suddenly. They are the result of too much input, and that happens gradually–although how long it takes depends on how much input is being taken in from the environment. ’Bot had been trying to regulate his senses for over an hour, and he was losing control. I got Princess’s attention and pointed at her brother. She’s been his twin for nine years,and she’s learned to read his cues. She quickly found a book for her teacher, and we started to move towards the checkout, and I was praying we could escape the store in time. ’Bot was a little bomb waiting to go off. We didn’t make it.
As we left the book aisle, and turned to the checkout lane, the front corner of the buggy bumped ‘Bot’s back. ’Bot’s brain tried to process the sudden, unexpected touch and failed. ’Bot looked at me, terror on his face, and collapsed to his knees. He rocked forward, pressing his forehead to the floor, covered his ears with both hands, and started to scream–not cry– SCREAM.
Now, normally, moving a child who is in the middle of a sensory meltdown isn’t the best idea. Your touch and the movement only increases the input they’re getting, and you’re also adding in a transition to the mix. However, ‘Bot’s meltdowns average about 30 minutes long. I couldn’t let him scream in the middle of the aisle for 30 minutes. We had to get out–immediately.
“Get my purse!” I said to Princess, and I reached around ‘Bot’s waist and began carrying/dragging him out of the store. He resisted. The movement was too much. He began to kick, cry, and strike out blindly,though whether he was trying to hit me or himself was unclear. He must’ve realized we were leaving the store because a mangled, garbled string of syllables began to pour out of him. He was unable to actually form words, but he was trying. Most people can’t tell that ‘Bot is autistic unless they know and are familiar with what to look for, however, in this moment it should have been glaringly obvious to anyone watching that ‘Bot had a disability. It should have been.
As we neared the door, ‘Bot began to struggle harder. Outside registered with him. Dark. Quiet. Escape. His 75 pound body became difficult for me to handle (I weigh about 130). This was an extremely dangerous situation. In the middle of a meltdown, his brain is not functioning properly, and ‘Bot would run right out in front of a car, never realizing the danger.
Finally, we reached the door, and I mustered all of my energy on the fight ahead–holding on to a struggling ‘Bot through a dark parking lot. I steeled myself for the battle of getting him into the van without one of us getting hurt. I forced myself to ignore the pain in my shin where ‘Bot was repeatedly kicking me. And we got stopped by the greeter.
“Uhm, Ma’am, he can’t have that.” she said.
“What?” I yelled, stupidly. It was then that I realized ‘Bot was clutching a gift card. A stupid blank gift card that he must’ve latched onto while flailing his arms around the checkout aisle.
“Fine,” I said, “you take it from him.”
That was when it happened. As the woman tried to grab the card from ‘Bot’s hands, while trying not to get hit by his wild fists, I heard it. Laughter. From adults gathered around. My son was in crisis–in the grips of a neurological short circuit–a danger to himself–unable to speak–unable to do anything but cry, scream, and fight for his life–and they thought it was the funniest thing they’d ever seen.
To this day, their laughter still rings in my ears. My child was hurting, and they laughed at him.
I could tell you how sad I was that their teachers never got the gifts the twins picked out with love. We had to just leave our buggy–groceries and all. Joe went back later and bought generic gifts for the teachers. I could tell how ‘Bot cried and buried his face in my chest the next day when he saw the bruises he’d caused. But none of that hurts as badly as the laughter.
It is never okay to laugh at a child with a disability. And you know what, if you’re not sure about what you’re seeing, keep your damn mouth shut. Everyone is upset about the death of one little girl,and they should be. It’s a tragedy. But how many children are hurt each day by adults who should know better? How can we expect our kids to be accepted by their peers, when their peers are being taught by their parents that laughing at them is acceptable?