Truth: my son’s Down syndrome is not a detriment to his siblings

In thinking about this post, I figured I would go straight to the source and ask my older kids how they feel about having a brother with Down syndrome.
The exchange went like this…

Katie: I want to write a blog article on what siblings think about having a brother with Down syndrome.
E (age 9): You have A BLOG?!!!
Katie: (laughing) Yes! So, how does it feel having a brother who has Down syndrome?
E: Normal.
Katie: That’s it? It just feels normal?
E: Yeah, like having any other kind of sibling. It’s normal.
Katie: How about you, Bud? What do you like about having a brother with Down syndrome?
Bud (age 7): The hugs.

As I spend time on Down syndrome and Down syndrome pregnancy message boards, I read about people’s fears for their other children. They fear bringing a child into the world who will require more attention than their other kids, thinking the older children will be jealous and resentful. They fear having another child after one with Down syndrome because they might not have as much time to devote to their younger child. They fear their typical children will be teased for having a sibling who is different.

I hope my words here can help dispel some of those fears.

In the beginning, my older children were three and five and did not have any concept of what Down syndrome was. We went to the annual Down syndrome society picnic when Kyle was seven weeks old, and that was the first time E and Bud noticed other people with Down syndrome. Even so, for a while they thought that any child with glasses had Down syndrome.

In my journal when E was five I wrote, “E asked Daddy, ‘What is Down syndrome?’ when he was reading My Friend Has Down Syndrome. I asked her if she knows anyone with it and she said she didn’t think so, and then she asked if she has it.”

By the time E and Bud had a solid concept of what Down syndrome is and what it means, they were also accustomed to going to doctor’s appointments and hosting Kyle’s “helpers” that came to our house. Sometimes those in-home therapy visits were challenging when E was home because she would vie for attention, but she never seemed to blame Kyle for my momentary lack of focus. Bud either played happily in another room during the therapy or was extra cuddly with me, which I welcomed.

Presently, the one grievance E and Bud have with Kyle is his screaming, but even then they will rush to his aid, rub his back and coo, “it’s okay!” until Kyle settles. When Kyle takes a long afternoon nap, he often has trouble falling asleep that night and keeps Bud awake with his chattering in their shared room. How out of character for a 7-year-old to complain that his brother is making him stay up too late!

My children don’t gripe about having a brother who has special needs. And it’s not as if they are the world’s most polite, well-behaved children. No, my kids gripe about nearly everything else. It just so happens that having a brother with Down syndrome is not a worry for them. What I hear from E and Bud most is that we are lucky to have Kyle, and that they love him so very much.

3 siblings
Kyle’s younger sibling (Mr. S, age 1) is not old enough to give me his take on Down syndrome, but he would have the most to complain about from being on the receiving end of Kyle’s occasional pushes. Despite that, I do see a mutually positive influence between them as they imitate each others’ sounds and movements. Mr. S wants to be wherever his brother is, and I am so excited to see how they grow up together.

brothers draw
Looking to other families who have a child with Down syndrome, I don’t see anything different from ours. One thing I have noticed is that people who have grown up with a sibling who has Down syndrome often go into the fields of special education, speech-language pathology, physical therapy, or occupational therapy. Clearly, their sibling was an inspiration, not a burden.

My kids are not embarrassed when they see their little brother in school. They tell me how they hold his hand and walk him to his classroom, and how much they love seeing him on the playground. I hope it is always this way. More than anything, I am confident that my children will grow up more patient, tolerant, and accepting of others because of their brother. I have been given no reason to think otherwise.

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About Katie

Katie Bee is the author of for Elysium blog: a site about family, Down syndrome, home, art, and writing.

0 thoughts on “Truth: my son’s Down syndrome is not a detriment to his siblings

  1. terrypetersen

    Since life isn’t an all-about-me journey, the sibling of a child with Down syndrome has the chance to learn about give and take in a natural way. My granddaughter does not have siblings, but she has cousins. They learn, too. Thanks! Great blog.

    Reply
  2. Tora

    When my six year old, Miss A, who has DS, was enrolled at an inclusive preschool at age 3, there was a typically developing girl in her class who just *got* her. She was loving, she was patient, she was kind. She waited a little longer to hear what Miss A had to say, she sought her out as a playmate. She made me happy cry about 3 times a week. I now know that that little girl has an older sister who has Down syndrome…even at 3 when she didn’t understand cell division or developmental delays, she was a kinder, gentler, more compassionate three year old than the rest of her peers. I am convinced that my two younger children will get that kind of benefit out of having a sister who has DS. We could certainly use more compassionate adults in this world…I hope I am raising some.

    Reply
    1. Maggie

      We find every school year that there are SO MANY children in our Boys’ inclusive classes that demonstrate compassion, patience and love for our children who have Down syndrome… although they do not have any sibling with DS or any other special needs. It is, in my opinion, just another glorious part of the magic that is Down syndrome.

      Reply
  3. Catherine

    It can work out either way. There are families who have children with siblings that need a lot of extra time, attention, work and expenses, that have difficulties with this and it can affect the other children adversely. It’s wonderful when it does not, and even better when it is something turns out to be a positive experience. Was and is not the case with my neighbor who did grow up with a DS sibling and is now facing the agonies of her parents now unable to care for the middle aged man as they have aged, and none of the three siblings willing to bring him into the fold. A lot of heart ache here. And yes, she would not have knowingly brought a DS pregnancy to term, much as she loves her brother.

    Reply

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