How Down Syndrome Typically Affects Typical Siblings: An Interview with The Big Kids

When Glendon & I shared with The Big Kids that we were planning to adopt a child with Down syndrome, they didn’t fully understand the implications. At ages 5 and 3, how could they? In their young minds, a new baby with Down syndrome was simply a new baby to them and they were thrilled.

Many families who’ve received a prenatal diagnosis of Down syndrome wonder how a child with Ds will impact their typical kids. I recently read a story of expectant parents who worried that a child with Ds would lead to resentment and future estrangement from their older children. This troublesome thought became their main reason for termination. I grieve that they were left alone in their fears, with no one really available or willing to listen, support, and possibly offer a bit of hope.

While I certainly want to listen and be present for others in their fear and pain of a new and shocking diagnosis, I also want to provide them with a more complete picture. What these dear parents might not have known is that the extra care, time, and resources required to meet the needs of a child with Ds will impact typical siblings–but not to their detriment. In fact, research shows that compared to their peers, kids who have a sibling with Ds demonstrate a higher level of maturity, compassion, empathy, and a deeper understanding of what really matters in life. Of course, every sibling handles familial adjustments differently but these outcomes seem to more accurately reflect reality.

Several families in the Down syndrome community tell me that their typical children adore their sibling(s) with Ds. Of course, there may be medical hurdles to jump, social-emotional issues to manage, and delays to navigate but numerous studies indicate these are minor issues for typical siblings. The meaningful experiences and valuable lessons seem to far outweigh the *perceived* negatives.

For further evidence on this matter, I went straight to the source(s) to get their perspective on Down syndrome.

I close with a recent interview (done separately) with 10 year-old, Selah, and 8 year-old, Jude. As with every conversation in our home, they were encouraged to be honest without fear of my response. I recorded their answers exactly as they shared them–with no editing.

What did you think when we told you we were planning to adopt a baby with Down syndrome?

J: I remember I was real happy.

S: Excited.

How did you feel when you first met Sam at the hospital?

J: Happy. It was awesome to have a little brother. I thought his tubes were cool.

S: Kinda weird because he was attached to all those cords. He was really tiny.

What do you remember most about Sam during his time in the NICU?

J: The tubes that came out of his mouth, like when he breathed out all the bad stuff. I was happy to hold him.

S: He smiled when we held him. He made funny faces when we fed him the bottle.

What was your favorite thing about Sam when he was a baby?

J: I could easily hold him.

S: His laugh–that’s still one of my favorite things.

What was the hardest part for you with adopting Sam?

J: When I learned about racism and his brown skin.

S: It was a long time away from our home.

What do you enjoy most about being a big brother/sister to Sam?

J: He tackles me. I get to cuddle with him.

S: He hangs out with us. He wants to be with us–he plays games and tag with us.

What does Down syndrome mean to you?

J: It means you will be slowed down in some things like being potty trained. It means you might not be able to speak up to bullies because you have a hard time speaking. I feel like Down syndrome makes Sam Sam. He wouldn’t be himself if he didn’t have Down syndrome.

S: It’s like an extra gift. Some people think it’s an issue but it’s like a prize–like you win Down syndrome.

What is it like having a brother with Down syndrome?

J: I like it. Down syndrome makes Sam cuter. It makes me happy. And if Sam didn’t have Down syndrome, I might not know what it’s about or what it’s like for others.

S: Two things: One, it’s awesome. But two, it can be scary because of low muscle tone and Sam’s breathing sometimes.

What is the most challenging part of having a brother with Down syndrome?

J: Sometimes he needs extra care and attention. And I have to share my room.

S: People staring or getting annoyed with Sam because they don’t understand he needs extra support sometimes.

What is your wish for Sam?

J: That when he grows up he’ll have friends and a good job.

S: I have so many! That he’ll be able to do what he wants and Down syndrome won’t–and shouldn’t–affect that. That he’ll be able to stand up for himself. And that he’ll tell us when he has problems, that he won’t keep it to himself so we can help him.

For further reading on this topic, check out these resources:

ndss.org

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3348944

http://downsyndromepregnancy.org/sibling-perspectives-on-down-syndrome

How has Down syndrome made a difference in your life? Your kids’ lives?

Would love to hear from you!