Submitted by Renee Beauregard of the XXYY Project
Like so many parents of children and adults with disabilities, I am always on “high alert” to protect my son against the UN-kindness of strangers. But the other day, I found myself realizing that strangers who don’t get it can’t really take my son’s joy away from him.
You see, my son is 29 years old but still a big kid at heart. In public, he likes to wear pieces of his animé costume (usually a big cape with flames on it), accented by a jester hat that he loves. Believe me, I TRY to get him NOT to wear them. But he is adamant about wearing what he wants so I smile and watch as strangers try to cope with his unique style.
One night, my husband and I went with him to the First Friday in the Arts District. Of course, he felt his cape was extremely appropriate in this situation and he wore it with pride and joy, including on the Light Rail. My husband and I watched as strangers stopped him on the street to compliment him (and they were actually sincere) about his cape. Some even asked him where he got it. It worked for him and he was very happy. When he approached people in an effort to say hello and make friends, he was greeted by people who did not seem to find the outfit at all unusual.
This week, however, I was in the grocery store with him while he was wearing his outfit and observed something quite different. Two young men were shopping in the same aisle as we were. They didn’t know I was with the guy they were talking about. What they said doesn’t really matter. I was standing right next to them – almost between them – as they talked about my son. Then my son came down the aisle to show me something and it was clear to them that he was with me… and that I had heard everything they said. As we walked away, I turned and looked at them over my shoulder with “that look” that we parents take out when we are protecting our children. Their heads practically hit the floor. Maybe it was an AHA moment for them – maybe not.
At that moment, I felt hurt. But I was surprised that I didn’t feel more hurt than I did. Is it because I have tougher skin now? Or is it that I really do believe that nobody can really take his joy away from him? A part of me also thinks that maybe those guys, and all the strangers like them, are missing out on something so wonderful in this world: the unbridled joy of hanging out with my son and realizing how little it takes to make him happy. He is looking only for the gems in the world – only those who get him and accept him for who he is. In spite of knowing that people sometimes give him “those looks” over his outfits, he presses on in his quest.
You just gotta’ love that.
So next time you go grocery shopping, whip out your old Halloween costume and wear it. Don’t let my son have ALL the fun! If you see him on the Light Rail, or someone just like him, tell him that you think his outfit is very cool. You will make his day – maybe even his life.
Renée Beauregard is the mom of an adult with XXYY Syndrome and another teenage son. She owns a business called CommUlinks of Colorado, which provides consulting to nonprofit organizations. Renée is one of the founders of XXYY Project (www.xxyysyndrome.org) and she has been involved in the steering committee of the National Organization to End the Waiting Lists (www.noewait.net). In her not-so-spare time, she advocates for people with disabilities on issues impacting her son.