A Common Question Answered: An Interview with My Tweens

In celebration of Down Syndrome Awareness Month, I thought I’d revisit one of the most frequently asked questions of our family. A few years ago, I sat down with my two older children to get their unfiltered thoughts on their role as typical siblings to a brother with Down syndrome. You can read that post here.

When we were in the middle of the adoption process, we were often asked, “What do your other kids think about having a sibling with Down syndrome?” I want to believe this question was rooted in curiosity but at the time it felt more like a gnarled finger wagging in my face, “You better think twice about how Down syndrome will impact your older kids.” Sometimes I wonder what Sam thinks about having siblings who have only 46 chromosomes.

What we’ve known for years and continue to learn from the Down syndrome community, is that most typical kids are full of gratitude for their siblings with Down syndrome. There are certainly more appointments, therapies, and factors to consider for each family but not to the detriment of the sibling relationship. In fact, the National Down Syndrome Society states on their website:

“Studies have shown that children who have a brother or sister with Down syndrome can benefit in many ways. For example, these children often exhibit a level of maturity above that of their peers and tend to have more highly-developed communication and social skills. The experience and knowledge gained by having a sibling with Down syndrome also seems to make children more accepting and appreciative of differences. They tend to be more aware of the difficulties others might be going through, and often surprise parents and others with their wisdom, insight and empathy.

Brothers and sisters of an individual with Down syndrome are also very much aware of their sibling’s challenges and thus, often take a tremendous amount of pride in his or her accomplishments. In addition, parents often report that no matter what issues siblings may have with their brother or sister with Down syndrome at home, outside the home they are typically very loyal to their sibling and do their best to defend and protect him or her.“

The results of these studies mirror my own kids’ experiences. They have discovered laughter and joy in the challenges, empathy for those who need extra physical support, and tender hearts for those who learn outside the neurotypical framework. I will also add that Down syndrome isn’t necessarily the challenge for us; the difficulties are more often related to our culture’s response to Down syndrome, which includes staring, invasive questions, the R-word, exclusion, ignorance in nearly every social setting, and pity–all of which my older kids have navigated with courage and grace.

In an effort to maintain a home where we all feel safe enough to be vulnerable, I recently sat down again with my tweens to hear their thoughts on what it’s like to have a sibling with Down syndrome. My goal was to see how their perspectives have shifted now that they’re older and increasingly conscious of social identities and ‘fitting in.’ Spoiler alert: not much has changed but their responses are more thoughtful, more articulate, and more nuanced. Cue the beaming parent look.

I close with two recent, separate interviews with Selah who will soon be 13, and Jude who is eleven. As with every conversation in our home, I encouraged them to tell the truth, with no pressure to please me or their dad. I did not edit their responses but I did include notes in parentheses where clarity might be helpful. In addition, both Selah and Jude gave me permission to share.

If your friends asked, “What’s Down syndrome?,’ what would you tell them?

J: It’s a disability that some kids have where you learn and grow more slowly. And it’s noisy.

S: It’s a disability where you have an extra chromosome and it affects your growth and how you learn and speak. It may take a little longer for people with Down syndrome to understand or learn something.

What has been the biggest challenge in having a sibling with Down syndrome?

J: When people stare.

S: Sometimes I wish he could talk to us. {Sam also has Autism, which is woven into his speech delays.}

What have you learned by having a sibling with Down syndrome?

J: To be more calm so I can help Sam when he gets frustrated. It’s taught me to be more patient. I also notice when someone else has Down syndrome now and that makes me feel better. Not many people in this area have Down syndrome.

S: It’s okay to not understand concepts right away. You don’t always have to be like other people—it’s okay to be different. I feel like if I saw someone else with Down syndrome, I would understand and appreciate their similar experiences.

What do you wish people knew about Down syndrome?

J: I wish people knew what we knew: that it’s not bad.

S: That it’s not a horrible, miserable thing but it’s not always happy, easy, or wonderful either. But neither are typical siblings. {This one made me laugh!}

What’s your favorite part about having a sibling with Down syndrome?

J: His laugh; he gets so excited and that’s fun to watch. Also, wrestling. And when he came over to my lunch table at school and made me laugh.

S: Sam has felt younger for longer and that’s fun. He understands our boundaries but sometimes he’s hilarious when he pushes them.

Your best friend just found out that their newborn brother has Down syndrome and they seem worried. What would you say?

J: I would tell them that it’s not bad. Your brother might grow slower and not talk right away but you will laugh and have fun!

S: He’s different but you can love him all the same. I wouldn’t sugarcoat it but I also wouldn’t say that it’s full of difficulties. It’s not what other people make it out to be.

What is your greatest wish for Sam?

J: {After a very long pause} That he doesn’t get shot by a cop. {After another long pause, he whispered with lower lip trembling and head down} And I don’t like having to wish that. {This led to further dialogue with Jude to help him process.}

S: That Sam will learn to not care what other people think. And that he’ll be able to read.

It’s your turn! How do your typical child(ren) relate to your other child(ren) or friends/relatives with Down syndrome? How has Down syndrome made a difference in your family’s life?

Would love to hear from you!

Featured image by Lona @istlona at Unsplash