Nov 142013 13 Responses

Down Syndrome Is Not My Problem

A classmate said, “My mommy says you have problems.”

Ella responded, “I don’t have problems; I have Down syndrome.”

I can’t fathom a better response.

I’m not sure where the response came from or who told her to say it (I wish it would’ve been me), but I couldn’t be prouder.

Ella is 8 (and a funny 8 at that). She has Down syndrome. And her second grade classmates realize there is something unique about her.

It’s easy to imagine the conversation going on in the homes of her classmates. Children ask questions and parents struggle to give sensitive, yet meaningful answers.

Some have called us. I never know exactly what to tell them or how much more difficult might it be for them to try to find the right words on their own. (See: How I Told My Son His Sister Has Down Syndrome)

I assume the conversation went like this:down syndrome

“Mommy, what is wrong with Ella?”

“Well, honey, nothing is wrong with her. She just has a few problems.”

The answer has no ill intent. It’s an attempt to give understanding to an inquisitive child.

Chromosomes are difficult to comprehend. Developmental disability is hard to understand. Problems make sense.

Yet to Ella, “problems” is not the issue.

We All Need to Be Gracious

Helping children understand disability and special needs requires grace from everyone involved.

Parents of Ella’s classmates need to be gracious by showing the courage to have these conversations with their children. They aren’t easy; no one knows exactly what to say, but the conversations need to be had. If they aren’t had, children will come to their own conclusions and they will be wrong. Many will become the children which every parent of a child with special needs fears—the one who mocks, laughs, and bullies. In order to prevent the bullying and mocking, parents need to have the courage to educate their children.

Yet parents of children with special needs have to have an equal amount of grace. No words are perfect. No matter how a parent trains their child, mistakes will be made. Even if there were perfect words, we are imperfect people. We all stand in need of grace. While “problems” is not my favorite description of a medical condition, I understand it and it doesn’t bother me that it was described in that way.

Ella, and all children with similar conditions, need to have grace. That’s what Ella gave in her response. It was grace. It was truth communicated with an empathetic love. No judgment. No defensiveness. No frustration of a questionable word choice. Grace required telling the truth in love.

In situations like this, it is easy to lose a sense of empathy and grace. It’s easy to expect perfection from others. It’s easy to look for a fight. Fighting might feel good in the moment, but it is never useful in the long-term. Grace is a better way.

We All Need to Be Educated

While we all need grace, we also all need education. Not knowing what to say should encourage us to learn what to say. We should neither ignore the conversations nor boldly say whatever we wish while not caring who is offended. Remember, you and I do not get to choose which words offend others; we do get to choose whether or not we use those words. Knowing what is and what is not offensive is the beginning of showing empathy toward others.

There are several ways to be educated about special needs:

Ask a parent of a child with special needs. Admit your ignorance, communicate your desire to learn, and ask questions of how to best communicate with and about a child with special needs.

Read of the experiences of families with special needs. Here are 10 blogs from parents of children with special needs.

Talk and listen to a child with special needs. Show the courage, make the effort, do whatever it takes to communicate. One of the greatest teachers is trial and error. By communicating with a person, we can hear how they describe themselves, understand their perspective, and get a grasp of their understanding of their situation.

In Ella’s situation, one of the best tools we have found to help educate others on Down syndrome is the following video. Watch it with your kids, discuss it, and if you have questions, don’t hesitate to ask us.

For more about Ella, see:

How Many Chromosomes Will We Have In Heaven

8 Leadership Lessons Ella Taught Me In Her First 8 Years

Life Lesson from Ella: It’s Okay to Laugh and Cry

 

13 Responses to Down Syndrome Is Not My Problem
  1. […] When I hear the word, I often feel bad for the person who spoke it. I assume that if they knew how i... kevinathompson.com/what-the-r-word-means-to-me
  2. […] As it was, and is, with Ella, so it is with her brother, with your children, and with every person w... kevinathompson.com/prayed-night-ella-born
  3. awesomeaudreyemily Reply

    Thanks for sharing that video, it was great. My little one is only 15 months old, so it can sometimes be scary to meet/see older children with DS, but the more I read/see the better I feel about Audrey’s future. When she was just a day old, I was already crying about the kids who might bully her! But it’s silly to worry about what may never be… if we can keep raising awareness, things will just get better and better for kids with DS.

    I love Ella’s response to her classmate too!

    • Kevin A. Thompson Reply

      Thanks. I don’t think it is silly to worry about what will never be. To me, it is part of the grieving process. God bless.

  4. […] Versión en inglés Down syndrome is not my problem […]... blogenespanol.ndsccenter.org/el-sindrome-de-down-no-es-mi-problema
  5. […] no tengo problemas. Tengo el síndrome de Down Escrito por Kevin A. Thompson Publicado en http://www... downberri.org/2015/03/16/yo-no-tengo-problemas-tengo-el-sindrome-de-down
  6. […] It’s celebrated on the 21st day of the 3rd month because Down syndrome is an additional, or... kevinathompson.com/how-many-chromosomes-will-we-have-in-heaven
  7. […] While I operate by a system which assigns changing values depending on something’s worth to me... kevinathompson.com/children-disability-abortion
  8. Pam Davis Reply

    The video you suggested we watch doesn’t come through on my computer. Could you send me a link please. My granddaughter is 7 and has DS. Did you ever talk to your daughter’s classmates about DS in a controlled setting? I sometimes think this would be a benefit for classmates to have their questions answered by people who know how to give appropriate answers. Thank you for your blog, Ella is beautiful.

  9. Gina Reply

    She is beautiful!

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