Down Syndrome and the Sibling Dynamic

by Megan Labuda

There are many questions we have as parents raising a child with Down syndrome. My daughter Penny is 10 years old. In addition to rocking her extra chromosome, she is on the autism spectrum. I remember a particular concern came to mind when Penny was just around 12 months old and we found out I was pregnant with our son.

Penny & her brother Sam

We were beyond excited to be growing our family. A big family was something my husband and I always wanted.  But my giddiness and pure joy were suddenly jolted by a thought: how will this new baby impact Penny’s well-being? I thought that a new baby meant that I wouldn’t be able to give Penny the full attention she needed.  She would only be 18 months when the new baby would arrive, and that is too little to have attention taken away.

Could this affect her development? What have we done?!?! Well…nine years and four kids later (Penny, Sam, Cece and Eloise), I look back and think if I had only known then what I know now, I could have saved myself so much unnecessary worry and guilt. I now know that one of the greatest gifts I have ever given Penny is her siblings. The older my children get, the more I can see how much of a life-long blessing they are to each other.  I have seen Penny’s siblings develop this effortless ability for compassion, acceptance, and inclusion, both towards Penny and towards others.

While there are certainly some challenges, as with any sibling unit, Penny’s siblings have patience that they show every day that they are not even aware of. For example, Penny has frequent stimming behaviors that help her regulate her surroundings. When she gets excited, happy, anxious. or nervous, she flaps her hands, bounces up and down, and makes loud vocalizations. If we are in public and this happens, we tend to get many stares, uncomfortable looks, and sometimes avoidance.

Penny with her sisters Cece & Eloise

I love to quietly observe my children while Penny displays these behaviors, because they have no reaction to it. It is almost as if they do not even see or hear it. Even when Penny’s vocalizations drown out the sound of the TV show they are watching, they will just keep watching and maybe nonchalantly turn up the volume. I have seen them try to protect and comfort her if there are loud noises that they think would bother her. They show understanding when she reacts to too much stimuli in her environment. Even without fully understanding Down syndrome and Autism Spectrum Disorder, they have a better understanding of how to react and help Penny when she needs it. These traits do not have to be taught to them; they live it every day.

Through all their patience and understanding, they have this unconditional love for Penny. The cool part is as they get older, I see them show these same traits to others in our family and community. That is one of the many reasons why Penny is just as much of a gift to Sam, Cece, and Eloise as they are to her.

Penny and her family- Mom Megan, Dad Nate, Brother Sam, and Sisters Cece & Eloise

All parents want what is best for their children, and the “lucky few” parents are no different. However, at times that may be confusing. We want inclusion, but we also want exceptions to be made when needed. We want people to have high expectations for our children, but we also want people to make accommodations in order for them to thrive. It can be tricky to determine when such exceptions and accommodations should be made. I have observed in my family and in other families that siblings have this natural ability to know how to balance that scale. They know what action is needed at a particular moment. They know just how to challenge and hold their sibling accountable, but also help guide them and stand up for them when they needed.

I feel so comforted knowing that Sam, Cece, and Eloise will always have Penny’s best interest at heart. And that by growing up with Penny they will continue to grow their kindness and acceptance, bringing those attributes to others. There will be some people who see Penny as the girl with Down syndrome, but Penny’s siblings will always see her, first and foremost, as their big sister, not her diagnosis.