To The People Who Refer to My Daughter as a 'Down syndrome' Baby

Thu, June 04, 2015 12:44 PM | Anonymous member (Administrator)

Guest blogger:  Christy Proctor

When I was given my daughter’s pre-term diagnosis of Down syndrome, I went through every emotion known to man. Looking back, I now believe the fear was caused by lack of knowledge. I’d never met anyone with Down syndrome and didn’t know anything about what caused it. But I was determined to learn as much as I could to prepare myself for her birth.

That was the first time I came across “people-first language.” I thought, really? What is that? Why does it matter? Little did I know how important that phrase would soon be.

After Isabella was born, she instantly became the teacher. I was the pupil. When she was 2 months old, I started a Facebook page for her, hoping we could share our journey and learn from others.

I am often asked about why I share my daughter on social media. The answer is this: Although she has Down syndrome, I want people to know she’s still a baby.

Many times since Isabella’s birth, I’ve heard the term “Downs baby” by people who genuinely mean no harm. But if you saw a baby with cancer, would you refer to that child as “cancer baby”? I hope not.

Please let me remind you: She’s a baby, that’s it. A baby with Down syndrome. A baby who laughs, cries, brings joy to others and overcomes any obstacle she faces.

Does Down syndrome also bring adversity? It’s all in how you look at it. Do you see a glass half full or half empty? Do you see a problem or an opportunity? I see Down syndrome as an opportunity to learn, to teach and to love.

We love all of her followers and I enjoy sharing Izzy’s pictures, challenges and successes each day. However, it’s about more than that. “Downs baby” is hurtful, and I would not be doing my job as her mother or as an advocate if I didn’t make that clear. But that’s why I and many others in this community do what we do — to teach and educate others.

Be kind, think before you speak and remember: “I’m Isabella, I have Down syndrome. I’m not a Downs baby, I’m Isabella.”

A version of this post originally appeared on Isabella “Amazing” Grace‘s Facebook page. You can find it here:

I want to tell you what WONDERFUL time I had at the conference. I learned so much and came away with lots of ideas for our organization. -Barb Waddle, The Upside of Downs of Northeast Ohio


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