Last week we had a Revelation. An exhausted older mother and her Down Syndrome daughter met with us in Bryan’s apartment to discuss Bryan’s Life Sharing experience – an avenue she wishes to pursue for her child. Frustrated by the system, she wants her daughter to be well-cared for in a similar living arrangement in the event of her passing. Totally understandable.
During the initial pleasantries, the young woman revealed that she has Down Syndrome. Bryan looked at her and gasped, “So do I!” Now, this may not seem like a big deal – two young adults sharing their disability diagnosis, but this was the FIRST time Bryan has ever stated that he has Down Syndrome.
As parents, we never sat him down and said, “Now, listen. You have this diagnosis called Down Syndrome which will limit what you will be able to do in life. You will look different than most of the population and will have learning difficulties, will be discriminated against, and will probably never marry and have children.” Perhaps we should have. But we preferred that Bryan operated as Just Bryan without any preconceived notions about his abilities and how far in life he would travel. We encountered enough limiting language and barriers once entering the school system for the first time. We preferred the “sky’s the limit mentality.” No, we were not expecting miracles. We did not push him beyond his capabilities.
However, individuals – disabled or not – have unique qualities that make them who they are. No label can define them or limit them. That’s what we wanted for Bryan. In the process, it never really sank in that he had a genetic abnormality.
And so now, at age 41, he has publicly stated that he has Down Syndrome. Not as an apology, but as an excited connection with a new person he has just met.
During our summer vacation in Avalon, after consuming a huge waffle cone stuffed with Avalon Mud ice cream at our favorite ice cream parlor, a young, spunky nineteen year old blonde with Down Syndrome came bouncing up to me and asked, “Does your son have Down Syndrome?” “Why, yes”, I replied. “So do I!” she exclaimed (not unlike Bryan’s response last week). It wasn’t said as an apology. There was passion and a commonality in her answer. Bryan came over and they conversed for several minutes. I came to find out that this teen was already being touted as a model in television commercials, she was a cheerleader in her Egg Harbor Township high school, and was about to embark on furthering her modeling career under the watchful eye of her mom. “I’m famous!”, she exuded. Bryan, at almost twice her age, was not as impressed with her as I was. He had just met a cute girl and that was that.
During this month of October, Down Syndrome awareness month, I am proud to say that my son has now openly verbalized his disability. He regards it nonchalantly and matter-of-factly as one would recognize having blue versus brown eyes. Would that the rest of us could accept the Down Syndrome population as easily.
A year ago in my blog entitled “Awareness”, I wondered aloud if Bryan even knows he has Down Syndrome. Well, now I know. In that post, I challenged you, the reader, to practice inclusion all year long. I’m hoping that you have and, if not, I ask you to consider trying again this year.
The video above shows Bryan confidently singing the National Anthem before the start of the Local Meet of Special Olympics long distance walking and running competition. As a choral conductor who places special emphasis on diction in choral singing, his lack of pronunciation, clarity and incorrect lyrics makes me squirm as I listen. But, then, I listen again with the ear of a proud mama of a son who has finally acknowledged another aspect of himself and is able to stand up and sing in public, warts and all, and be very proud of the wonderful human being he has become.