I was at Target shopping for jeans. But as it is with all things shopping-related, I came away with more than I intended. The jeans alone were a big deal. Because my 7-year-old son, Charlie, has cerebral palsy, he wears braces on his legs.
The skinny-jean phenomenon is not for us. The material matters as well. If it is stiff, he finds it difficult to bend his legs and maneuver in his wheelchair. Charlie also wears diapers. Therefore, the more complex the composition of buttons and zippers, the harder his day is. Because of all this, I have become a jean connoisseur. The Cat & Jack adaptive jeans are a miracle in pant-form. They’re soft, with an elastic waist and snaps at the bottom to accommodate leg braces.
I was buying a second pair (because when you find jeans that work, you double up) when I came across a bright blue shirt covered in emojis. It was in the same line of adaptive apparel and it was on sale. My first thought: This is hilarious. My next thought: Oh, it’s soft and cheap. Naturally, I bought it.
The first time I dressed Charlie in his new shirt, he was getting ready to attend his special needs summer camp. I was telling him what they would do and which friends he would see, because he likes me to talk him through the story of his day before it starts. As I pulled on his shirt and described the trip they would take to the pool, he looked down and pointed to the emoji with the sunglasses, the one that said “awesome” under it.
I laughed. Charlie is mostly nonverbal and uses a speaking device, but his go-to for communication has always been pointing. I said, “Yeah, Charlie, it is awesome.”
I thought it was a fluke. He was digging the bright yellow faces on his shirt because they were fun. But later, when I picked him up from camp, I asked him how his day was and he pointed again to the sunglasses face and then the snoozing one with all the Zs. I’m always afraid to put words in Charlie’s mouth for fear of misinterpreting him, but when I didn’t speak right away he pointed again in the same order.
“It was awesome and now you’re tired?” I said finally. And he nodded.
I stood there for a minute in the hot sun in the parking lot as Charlie waved goodbye to fellow campers, and I let it sink in. He was using the shirt to talk. He had found a way to communicate his feelings in that moment using the material he had on hand. I was stunned that he could be so resourceful.
But perhaps I shouldn’t have been. Charlie has always been tactile and quick to express himself. He thrived with PECS, the communication system that uses picture cards and Velcro storyboards. He’d flip through those cards like a blackjack dealer until he found what he needed. But moving on to his speaking device, which looks similar to an iPad, was a tougher transition. It is more complex and adaptive, which he needs, but it also requires more patience, which he doesn’t always have. He tends to resist tapping from screen to screen to piece together the sentence in his mind. This is why the emoji shirt is so empowering for him. It’s right there.
Sometimes I get weighed down in the minutiae of every day — the heft of the wheelchair, the traffic on the way to speech therapy, the IEP goals met and unmet. But then something like this happens and I remember how miraculous it is that Charlie is even here. After being been born 10 weeks premature, he lived his first year with a tracheotomy and a feeding tube. He slept with an oxygen and heart-rate monitor. He had several excruciating surgeries.
And now, here he is, talking with his shirt, using whatever tools he has at his disposal, like a little MacGyver. I would never have thought to use that shirt in this way. But he did. And each time he does, it reminds me that though he can’t speak out loud, he communicates like a champ.
As his mother, I fight for him to be understood and included at places like school and camp. Moments like these, when he does it all on his own, without my help and with such adeptness, are the ones that let me know he will be just fine, even when I am not by his side.
He has since started pointing to the “curious” emoji, the one with the glasses, when he has a question, and the “dizzy” emoji when he doesn’t feel well. He’s growing proficient in shirt-speak. Margaret Atwood wrote that “Touch comes before sight, before speech. It is the first language and the last, and it always tells the truth.”
If that is indeed the case, then Charlie is speaking the truest language there is.