May 032013 19 Responses

How I Told My Son His Sister has Down Syndrome

For the past several months I’ve been saying things to my five year-old regarding his sister.

  • “Why do you think you can run faster than her?”
  • “Why do you know that and she doesn’t?”
  • “Why does she go to therapy and you don’t?”

I’ve been testing Silas to see how much he understands about his soon to be 8–year-old sister. I knew the time was quickly coming when he would be able to understand that Ella was different. For the past few months, the time wasn’t right. In the eyes of my son, everything was normal with his sister; his ability to do things she couldn’t defined his greatness and not her disability.

This week that changed. Friends were over and Silas got to see Ella interact with someone who is just two years older. Yet the gap between the friend and Ella seemed much more than 2 years. I wondered if Silas saw it.

I ask him a few questions, but nothing seemed to register, so I finally asked, “Do you know what Down syndrome is?”

He said, “No.”

I explained, “Down syndrome is a condition that makes a lot of things harder. It takes longer to learn things. It takes extra help. A person’s muscles aren’t as strong so it is tougher for them to run or jump.”

Silas seemed intrigued, so I asked, “Do you know anyone with Down syndrome.”

He mentioned a couple of kids who we see on occasion.

I agreed, but pushed for anyone else. He couldn’t think of any.

I said, “Ella has Down syndrome.”

You would think I punched him in the face. The emotionless conversation turned personal. His face wrinkled and he paused before saying, “Poor Ella.”

I reassured him that while it is sad, everything was going to be alright.

He said, “She is still happy.”

And I said, “Yes, she is.”

I asked, “Have you ever wondered why Ella goes to therapy but you don’t?”

He said he did, so I told him that Ella needs extra help to learn things.

He said, “Like math?” And I said, “Yep, like math.”

He was quiet for moment and as we began to walk out the door, my five year old said, “Dad, I’m glad Ella is my sister.”

I said, “Oh, really, why?”

He said, “So I can take care of her and learn from her.”

I had to agree with him. I’m glad that Ella is his sister as well. They will both be the better for it.

19 Responses to How I Told My Son His Sister has Down Syndrome
  1. Becky Harris Reply

    What awesome parenting.

    • Kevin A. Thompson Reply

      Becky, I’m not sure if that’s good parenting as much as proof that parenting isn’t always as hard as we make it.

  2. RJ Reply

    From the mouth of babes……

  3. Phillip Reply

    An excellent and foundational moment that obviously impacts your family, but also propels forward the heart of a boy who shall become a man who advocates with love and reason for others who are different.

  4. Paula J. Jones Reply

    Kevin, as you know I have a Down Syndrome grandson. Needless to say, this piece touched my heart.

  5. Trish Reply

    This story really touched my heart. I love your son’s innocence and that he saw “nothing” wrong with Ella. She was perfect in his eyes and I am certain still is. God is good!

    • Kevin A. Thompson Reply

      Trish, she isn’t perfect in his eyes at all times, but this was a moment of true sweetness.

  6. Caleb P. Rogers Reply

    I love this!!! Thank you for sharing!!! I am Canaan’s dad. He is 10 years old and has Down Syndrome. Madison’s,Uncle Caleb. I am learning a lot from Canaan.

  7. Linda Reply

    My heart is touched by your love for your children. Not surprised. What touched me about your story, was Silas comment. “So I can take care of her and learn from her.” .. My sister is disabled and how much I learn from her and she gives me strength too. Thanks Kevin for sharing.

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  9. camille Reply

    What a great example of kids doing the talking and parents taking the tIme to listen. Great post!

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  11. brad Reply

    disappointing you told him it was sad……why is it sad? Cats do not like water, dogs do not fly…different is not bad or sad.

    • Kevin A. Thompson Reply

      Brad, I completely agree that different is not bad or sad. There are many aspects of the differences which are better. However, we should not deny the sorrows which also accompany this diagnosis. Many in the Ds community have fallen for the lie that if you show any sadness it diminishes the good. That is simply not true. I love my daughter, am proud of her, and grateful for her, but that doesn’t prevent me from feeling deep sorrow on her behalf when she is mocked or hurt for her when she struggles to do home group or feel personal loss when I know the unique struggles of being an aging caregiver while have an adult child with special needs. To deny the bad does not diminish the good, it actually accentuates it because it’s living in truth. Anytime I write an article like this, but I also receive many comments from people thanking me for vocalizing what they feel as though they are not allowed to say. I’ve written on several of these issues: “It Okay to Laugh and Cry” “Abundance Does Not Devalue the Different” etc, take a look under the Special Needs category. Thanks for reading.

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