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
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