Stories about: Raising a child with disabilities

Our patients' stories: Recognizing miracles in everyday life

by Amber Bobnar

Amber and Ivan at a summer concert
Originally from the tropical island of Hawai’i, Amber Bobnar and her family moved to Massachusetts to be closer to Children’s Hospital Boston and Perkins School for the Blind where her son, Ivan, now attends preschool. Amber also writes about life raising a blind child with multiple disabilities at WonderBaby.org.

 

The media sometimes seems obsessed with miracle healings. They like to focus on the story about the family who found a non-traditional cure for their child’s rare disease or traveled around the world for an experimental (and ultimately successful) surgery.

This means that the rest of us often fall through the cracks. Sometimes there is no cure or miracle surgery, but that doesn’t mean our stories aren’t worth telling.

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Our patients’ stories: A protective bubble of my own

Sandy Ho
I’ve always known my parents would forever see me as their baby. And being their little girl, I knew that it would be hard for them to watch me leave for college to live in a dorm, all by myself. I appreciate their concerns and love, but it didn’t change the fact that after high school I was ready to be on my own. As a kid with Osteogenesis Imperfecta (O.I.), a brittle bones condition, I could not wait to get out from their protective bubble, which I had lived inside of for 18 years.

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Children's blog makes headlines

Brian Skotko and his sister, Kristin

Children’s Hospital Boston geneticist Brian Skotko, MD, MPP wrote a Thriving blog in response to a hurtful article that circulated throughout the Internet, in which a writer at GQ likened poor fashion sense to “Style Down Syndrome.”

As a member of Children’s Down Syndrome Program, and brother to a person with Down syndrome, Skotko was outraged at the insensitivity of the original article and vowed to do all he could to raise awareness around the negative impacts these types of slurs have.

Good news. He was successful.

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Mock my pants, not my sister

The following was written by Brian Skotko , MD, MPP, a Physician at Children’s Hospital Boston’s Down Syndrome Program. It’s in response to a feature in GQ magazine that used insensitive language.

Brian Skotko and his sister, Kristin

On July 15, John B. Thompson of GQ magazine slammed Bostonians as the worst dressed in the nation.  Evidently, our beloved Beantown is actually a “bad-taste storm sewer” where all the worst fashion ideas come to “stagnate and putrefy.”  He further decries, “Boston suffers from a kind of Style Down Syndrome , where a little extra ends up ruining everything.”

Go ahead, GQ, and mock my blue whale-emblemed Nantucket-red pants. Laugh if you want at the loud argyles that I prefer to wear with my black suit. I don’t even care if you dismiss the sexy pink polka-dotted tie that I like to wear with my blue-checkered shirt in clinic. But, whatever you do, do not mess with my sister.

My sister, Kristin, has Down syndrome, and let me explain what “Style Down Syndrome” really is.  “Style Down Syndrome” is smiling when everyone else prefers to frown. It’s spending three summers, in sheer determination, learning to ride a bike because you want the freedom to be like everyone else. It’s singing tunes from Grease at the top of your lungs with your friends. It’s celebrating a third-place victory at a swim meet with as much gusto as the gold medalist.

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