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A Conversation Our Children Need Us to Have

I saw the look in his eyes, and I almost wished I could have given him fair warning before he spoke.  I knew exactly what he was going to say, and I also knew exactly how he was going to feel once he realized his error.  I was standing in line at the post office, trying to be patient as my baby girl was doing her best to squirm out of my arms.  I happened to turn slightly and caught the eye of the man standing behind us. He was staring at my daughter with this huge grin spread across his face.  My quick glance in his direction was all he needed. The flood gates opened and out came the story. “Sorry”, he said (acknowledging his starring). “My wife and I adopted our daughter from China over twenty years ago now.  I was just feeling nostalgic as I was watching your little girl.”

Now, in all fairness, I could have just smiled politely and moved along.  I just couldn’t bring myself to let it go. I’d been in this place too often and was starting to have fun with people’s reactions.  “Oh”, I said. “We adopted our daughter from New Hampshire.” And there it was; the expression that I had become so familiar with over the past several months.  The smile kind of fell off his face and his eyebrows furrowed just enough to signal his confusion. “Oh”, he replied. “Is she?”

“She’s not Asian”, I interrupted, as he tried to dig himself out of this awkward place.  No worries”, I continued as I saw his discomfort grow. “A lot of people make the same mistake.”

It was about this time that the man standing behind this discomforted fellow wanted in on the conversation and, much to my new friend’s dismay, leaned in and voiced his disbelief, “Where’s she from?” he asked with less tact than most might offer.  Before I could answer, the man who began the conversation quickly shooed him off by gruffly proclaiming under his breath, “She’s from New Hampshire.”

This exact conversation has happened so many times, our family has coined a term for it; “Asian Encounter”.  It’s quite understandable, really. Our daughter has long, jet black hair, beautiful dark brown eyes and an olive tone to her skin, all features that make those of Asian descent so undeniably beautiful.  Being that I don’t carry any of the same features, people correctly conclude we adopted her, and then logically assume we did so from China. Those who don’t know our daughter see her more prominent features first and then mistakenly attribute the almond-shaped eyes to yet another Asian feature, rather than what is perhaps the most definable trait of those with Down Syndrome.  It’s uncanny how many times this has happened. The list of those who have been mistaken even includes a doctor and a nurse practitioner whose own sister has Down Syndrome.

Of course, when I look at my daughter, I see Mary-Rose.  I’ve lost all ability to see her any differently than the feisty, yummy little piece of Heaven that she is. When we first brought Mary home, I didn’t know that would even be possible.  Proclaiming my daughter has Down Syndrome, is not something I ever thought I’d be happy, or proud, to assert. But now, I welcome the opportunity to share this about our little beauty and grow more proud each day of the way she rocks her extra chromosome.

If I’m going to be completely honest, I need to step outside my comfort zone and reveal the truth of the matter.  In the past, my own ignorance would leave me feeling “sorry” for the parents of children with Down Syndrome. Shortly before Mary came into our lives, I would sit in the car line each day waiting to pick up my boys from school and watch this little boy play with his mom.  He would show up at the same time each day and happily run over to the same spot to stand and wait for his older brothers. It’s not easy to admit, but when I looked at this sweet little guy, what I saw first was Down Syndrome. Not knowing a thing about him, I identified him by his limitations and went so far as feeling sad for his mother, mistakenly thinking she must feel burdened by her son’s diagnosis.

It’s taking some time, but I’m learning how to be an advocate for my daughter.  In doing so, I’m simply trying to help the world see her as the whole person that she is and prevent her from being defined by her extra chromosome.  When in conversation with others, I often hear people referring to those with Down Syndrome as, “the Downs boy” or “there’s a Down Syndrome girl in my neighborhood”.  I understand they are not trying to be disrespectful, but I’m learning how important it is to help people come to know and love the person behind the diagnosis. By referring to those who have Down Syndrome in this way, these beautiful beings are immediately reduced to the popular, and often mistaken, traits known to be carried by the extra chromosome.  Their unique and incredible personalities are stripped of them and they quickly become just one of a group of people who are assumed to be all the same.

This case of mistaken identity can be attributed to anyone who carries a diagnosis.  I often hear those who have autism described as the autistic boy or simply, “she’s autistic”, as if those two words can do justice to the unique individual they are meant to describe.  Anyone who knows a child who has autism or Down Syndrome, or any other developmental delay for that matter, knows their child is as unique and individual as the next. They are a person first; a person who lives with a particular challenge, a diagnosis that does not define them but rather is defined by the way they live up to the challenge.

While it’s not always comfortable to be an advocate for your child, speaking up on behalf of our children is the only way their true identity will come to be known.  The first step could be simply sharing this post with the hope that one person’s mindset will be changed and their heart enlightened. It’s a small step on a long journey, but one well worth taking.

Jessica Carbonneau