“You mean like Meg?” I was sitting in my class at Yankee Ridge, and my 1st grade teacher Mrs. Amdor was explaining to us what the new symbol meant that was painted on one of the stalls in our school bathroom. My teacher had just described what was known as “The International Symbol of Access” in an adapted way for first-grade ears. “It’s a picture that is supposed to use to show that this area is for someone that is handicapped.” I looked over at Brett. My fellow six-year-old classmate had practically yelled the words. I could feel everyone’s stares as he pointed at me, and felt my stomach sink. No one had ever used the word ‘handicapped’ to describe me and, although I didn’t know exactly what it meant, I was positive I didn’t like it. Not knowing what do but cry, I decided to hold it in and instead raised my one-fingered hand. “Mrs. Amdor? Can I have a pass please? I need to use the bathroom.”
John and I sat approximately ten rows behind Charlie at our town’s Spelling Bee. The Bee had actually been scheduled for the prior Saturday, but Mother Nature had an alternate plan, it being the middle of winter and all. Throughout the prior month, Charlie and I had spent ample time practicing the words emailed to us by the organizers, and as he spelled word after word correctly every time we practiced, I couldn’t help but allow my mind to drift. “Geez…perhaps he’ll even win this thing!” Earlier that morning, I had carefully laid out Charlie’s clothes on his bed “How do you feel, Char?” “Excited!” he beamed up at me which I immediately returned, ”Excited, huh? Okay, spell it!” And so he did….perfectly.
While waiting for the Bee to start, I looked around. There were seventy-four other fourth and fifth grade students and like Charlie, all appeared equally nervous and excited about the event. I quickly glanced over at him, now seated in the 2nd row. He was chatting with an child to his immediate right. Perhaps it was a combination of anxiousness and anticipation, but the other child seemed completely unfazed about Charlie’s two-fingered hands, even as our nine-year-old spoke to him quite animatedly, using his hands for emphasis.
The competition began with a quick and easy practice round. “Friday. Capital F-R-I-D-A-Y. Friday.” Pause. “That is correct.” Charlie smiled and to boost our pride even more, breezed through several more rounds. “Island. I-S-L-A-N-D.” Island.” Pause. “That is correct.” As he got used to the process, getting up in front of at least one hundred fifty strangers, spelling and sitting back down, I proudly noted that he was fine with standing in front of the crowd, believing that everyone’s attention was on his spelling rather than his different appearance. “Necklace. “N-E-C-K-L-A-C-E.” Pause. “That is correct.” But then came a word that he should have known. “Permanent. P-E-R-M-E-N-E-N-T.” Permanent.” Pause. “That is Incorrect.” We both knew he knew the word. John described it best, when he turned to me later and said, “I guess he cracked under pressure.”
“You mean like Charlie?” Although neither John nor I was actually there for what transpired last Sunday morning, John was recounting the story told by Charlie’s religious school teacher while we were in a mattress store, lying on a sample. Apparently, the children in his class were told that the following week the school would spend time focusing on Jewish Disability Month. The outburst came from a child in Charlie’s class, but who lives in a neighboring town and the boys don’t know each other well. Although the statement was innocent and the intention was harmless, from the teacher’s description of events, it both alarmed and confused our son. I pressed on the firm, pillow-topped mattress and faced my husband. “How did Charlie respond?” After quickly gaining his composure, he asked to go to the bathroom. Admittedly, my heart sank at the thought of Charlie standing alone by himself in the boys’ bathroom, trying to manage the situation without me there. John continued. “Apparently the teacher addressed the class while he was away. She told them that in fact Charlie can do everything they all could do and more; that although his hands look different, they didn’t hold him back from doing anything. The teacher added that Charlie had a difference, not a disability.” I decided to stand up, no longer feeling the desire to try out another mattress. “Okay, so what happened when Char got back to the class?” John grinned. “Actually, that was the best part. He walked back in, and when his teacher asked if he was okay, Charlie looked at the kid who had spoken and then responded with grace and confidence. “Oh, I’m used to it. It doesn’t really mean anything to me.”
Later the same day, a friend had passed along an online article that reminded me of my own article in Parents published a few years ago. Beth Hersom is the mother of a two-year-old daughter with, Apert Syndrome, a rare genetic condition. As a result, her daughter’s head is larger than average, her fingers and toes are fused, and due to further complications, she had to have a tracheotomy and she sits in an adaptive chair, at least for the time being. Hersom’s piece warmed my heart as she described her differences from a positive perspective, writing, “My beautiful girl stands out.” Similar to my realization about how to handle strangers’ interest, Hersom encouraged parents to allow their children to ask their “rude” questions. “Imagine what my daughter sees. A sweet little face unable to look away from her. Pointing. Then an adult pulls the child away, consciously avoiding looking at her. Now imagine this is happening over and over and over again.” Hersom wrote the piece clearly hoping other parents would see it and allow their children to encounter kids like her daughter, allow natural curiosity to unfold. She knew that once a kid gets past the reason her child looks different, he or she will realize that after all, “She is just a kid.” And, for parents who didn’t know what to say, she even encouraged something as simple as a smile. I myself grinned when I read that, remembering that I had offered the same advice and hopes in my interview on the Today show.
However, three years after writing my own piece and giving that interview, my kids are spending far more time in school and doing outside activities where I am not around. I couldn’t protect them from shame, embarrassment or teasing even if I wanted to. And so, as important as it is to try to provide the public with insight into what it is like to be on the receiving-end of the finger-pointing, stares and outbursts, I realize it is impossible to control every situation and reach everyone with my message. Instead, I remind myself that my own parents didn’t actually spend time writing articles about parenting me and how they hoped others would react. Instead, they measured their success by how well they could prepare me to be able to manage every unexpected encounter.