To the People Who Refer to My Daughter as a 'Down Syndrome' Baby

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.

baby wearing a bow 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.

Sign up for what we hope will be your favorite thing to read at night.

Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

Find this story helpful? Share it with someone you care about.

Related to Down Syndrome

I’ve Got a New List of Down Syndrome Characteristics

Pregnant with my second child, I knew something was different. Not one single test showed signs of Down syndrome. But something was different. As I woke from an emergency cesarean section, my doctor and midwife stood by my side. “Your son has Down syndrome,” the doctor said. I was scared. Frightened too much was wrong, [...]
author's son sitting on the couch during easter with his brother

The Issue Dividing the Down Syndrome Community

We all remember where we were when the First Diagnosis came — in the hospital right after delivery, in the doctor’s office, on the phone with the geneticist. “Your child has Down syndrome.” However we processed the information, those are words we’ll never forget. They instantly seem to divide us from all of the families [...]

Why I Don't Like the Word 'Disability'

My daughter Josee has Down syndrome, which is medically classified as a disability. Those who know me know I can often be accused of being the “word police.” I like to challenge words, just like I was challenged when I found out about Josee’s diagnosis during my pregnancy. Anyway, the word “disability” really doesn’t gel with me for [...]
young girl poses outside wearing purple jacket and holding a handful of autumn leaves

To the Person Who Typed 'I Don't Like People With Down Syndrome'

Once in a while I like to look at the search engine terms that bring people to my site. Some of them are so puzzling I dedicate blog posts to respond to those searches. Since it landed those people on my blog I might as well write about it. Today’s term is, “I don’t like [...]