Jun 302016 36 Responses

What Down Syndrome Looks Like to Me

Today is Ella’s 11th birthday. Hours after her birth, my friend (and her pediatrician) came to our room to deliver the diagnosis of Down syndrome.

In that moment, I had very little clue what Down syndrome truly looked like. I had been around a few kids with the condition. But I don’t remember having seen any adult with Ds.

At the time, the mental image I had of Down syndrome was loving, but sad. It was kind, but dreaded. It was understandable, but radically incomplete. Eleven years later I have a different image of Down syndrome. It’s an image that includes the struggle and challenges, but one which also understands the potential, humanity, and hope of every individual who is diagnosed with Down syndrome.

When I see Down syndrome, this is what I see:


1. Joy. When Ella was born, people didn’t know how to react. That’s understandable, we didn’t either. While there was confusion and sadness over the diagnosis, that didn’t take away the common joy which a new parents have. The joy hasn’t stopped. (See: What I Prayed the Night Ella Was Born)


2. Beauty. Ds causes different facial features. It’s easy to focus on the features which are not considered beautiful by society and forget the positive features. As a pastor who regularly visits newborns, I can always tell they don’t have Down syndrome because their noses look so big. Ella’s was small and beautiful.

3. Potential. The world is yet to see the ceiling of a person born with Down syndrome. While we have come a long way as a society in giving children and adults the services they need, we are still on the cutting edge of understanding how to empower those with Down syndrome to reach their full potential. I know there are limits, but the possibilities are greater than the limitations


4. Stubbornness. I keep reminding myself that in the long-run, this can be a great trait. In the short-term, it is challenging. Ella is stubborn, but that stubbornness also creates a sense of individuality, drive, and will. Our job is to make her stubborn about the right things–truth, doing right, justice, caring for others, etc.


5. Connection. While Ella has a difficult time expressing her concern for others, she desperately wants to connect with other people. She doesn’t care about toys or things, but she cares deeply about being included by others. (See: What Ella Wants, Your Child Needs)


6. Playfulness. Ella loves to laugh and make others laugh. She doesn’t always know how to do so, but when she finds a trick, she will repeat it. She loves to have fun with others, but she does so in a far less pretentious way than many. (See: Ella on Kicking a Teacher)


7. Toughness. Down syndrome is often seen as a weakness. After all, it causes low-muscle tone and can lead to people getting tired easily. But when I think of Ds, I think of toughness. Ella has an ability to face far more challenges than most people, but keep on going every day. It takes more effort and energy for her to complete most tasks, but she gives up far less often than many people I know.


8. Pride. While accomplishments might occur slower for Ella, she takes just as much pride in each achievement (and her parents take even more pride than normal). It’s easy to mistake people with Down syndrome as having low motivation or desire. It simply isn’t true. Like every person, Ella takes pride in what she does.


9. Challenges. There is no question that Down syndrome has special challenges. There are aspects of Ella’s life I’ll never be able to fully understand. I have to continually remind myself that many things are harder on her than they are on me. Yet the challenges aren’t necessarily all negative. Like any adversity in life, with them comes the opportunity to learn and grow.


10. Dreams. The life expectancy of those with Down syndrome is less than the rest of the population, but it is far greater than it use to be. Knowing Ella will likely live a longer life than those born a generation ago, places more emphasis on her dreams for the future. She often thinks of what life will be like ten or twenty years from now.


11. Love. It’s a misconception that people with Down syndrome are the most loving people ever. Maybe some are, but Ella is not. She doesn’t quickly and easily give love or affection to others. But she does love fiercely once a person proves themselves trustworthy.

This is what I see when I see Down syndrome. In the comments, wish Ella a Happy Birthday and tell her what she has taught you about Down syndrome.

For more, see:

Ella’s New YouTube Channel, The Ella Life (featuring cooking videos and highlights from road trips)

A Story About Ella on her 10th Birthday

Five Principles for My Daughter’s Teacher

Down Syndrome Is Not My Problem

36 Responses to What Down Syndrome Looks Like to Me
  1. […] The past 12 years of raising a child with Down syndrome have been interesting. In many ways, the exp... https://www.kevinathompson.com/still-need-syndrome-awareness

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