Family, Uncategorized

Coffee Reflections: Society and Syndrome

I read a lot. At work, at home, for work, for pleasure…all the time. One of my favorite times of the week iscoffee Saturday morning. Morning coffee in hand I check Facebook, read new updates on the blogs I follow, and relax.

I really enjoy reading blogs on how events changed someone’s perspective on life and what it means to be human. Our children, unlike us, don’t know that some of the differences they experience are attributed to something in their genetic or neurobiological make-up. They are children. Whole and beautiful.

As children grow they begin to ask about differences. Comparisons happen. They just do. Our attitude before questions arise shapes their view of others.

I was present when Dr. Alison Downes, a fellow in Developmental Pediatrics, was asked by a sibling of a little one with DS if the large scar from their sibling’s heart surgery would ever disappear. Dr. Downes has a large scar where her thyroid was removed and children frequently ask her why it’s there. So her thoughtful response was this,

“No, scars never disappear. They are there to remind us of something that happened in our life to make us stronger.”

Comments, attitudes, and experiences may leave invisible scars on the heart. As a parent, when my son Henry was diagnosed with Tourette syndrome (TS) I feared for his future. This fear was based on societal attitudes about TS now directed toward my son.

  • Will teachers understand?
  • Will children be kind?
  • Will we find a way to help him manage the most significant tics (like spitting, touching under his nose until a sore forms, etc.)?

What hurt were comments under the guise of encouragement. “At least he doesn’t do (fill-in-the-blank tic). It could be worse.” I hear similar ones about DS, “At least he doesn’t have (perceived worse diagnosis).” It could be worse statements attempt to downplay very real emotions rather than trying to listen and understand. Just not helpful.

My biggest fear is echoed by many parents I talk to: The concern people won’t see Louis for Louis, my serious, creative, running partner, and instead only see the label and tics as their first and only focus.  Thankfully, most of our journey has been positive. The other portions strengthen my resolve to educate others about TS and create a community that accepts differences as part of life.

Little by little, day by day, families and professionals are changing the shape of what it means to be different our culture. We are stronger today because of the challenges lived through and learned from. Some experiences leave scars – and they are there to help us remember.

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