People often ask me what it is like having a sibling with Down syndrome for our two younger children, Marilee and William. Is having their 16-year-old sister, Penny, in their lives different than having a typical sibling? Is her presence better? Worse?
They are impossible questions to answer, because Penny is the sister they have been given. And maybe that’s the answer in and of itself—she is a gift to them, and they are a gift to her.
And yet one of the pervasive myths surrounding having a child with Down syndrome is that she will be a burden on the rest of the family, including her siblings. Whenever I write about our family for large media outlets, this idea comes up in negative comments. And this myth stands behind the question of whether or not Marilee and William will benefit or be burdened by Penny’s presence in their lives.
Data from multiple surveys demonstrates the positive value of having a sibling with Down syndrome. As Dr. Brian Skotko and Susan Levine wrote in a reflection on their 2022 study with hundreds of participants: “The vast majority of brothers and sisters describe their relationship with their sibling with Down syndrome as positive and enhancing.” Anecdotal reports support the research conclusions. As the mother of three children, one of whom has Down syndrome, I have been thinking about the ways that it is good for them all to have each other.
Penny has the advantage of siblings who refuse to assume incompetence on her part. Even the most well-meaning adults and peers in her life, including her parents, overcompensate for her. Her siblings never do.
She moves more slowly than both of her siblings. When she is unloading the dishwasher, for example, I’m inclined to pitch in and keep the process moving. Her siblings cry foul unless I intend to help them with their chores as well. It’s a small point, but Marilee and William both advocate for Penny’s very real abilities. They often do so to make sure that their own needs aren’t overlooked. But they are also insisting on Penny’s participation within our family system.
They have an older sister who does not operate by the rules of their meritocratic world.
When we go for a family hike, they recognize that she won’t move at the same pace. They also encourage her to push herself and keep up with them. They insist on her abilities and never turn to what has been called the “soft bigotry of low expectations.”
Penny’s need for therapies and doctor’s visits and other supports does still mean that I spend more time with her than I might with a typical 16-year-old daughter. Her siblings feel that imbalance. They are old enough to understand why I need to be the one to drive her to the specialist an hour away and therefore find carpools for them or hire someone to pick them up from practice. But knowing my attention goes in her direction still leaves an ache.
At the same time, they have an older sister who does not operate by the rules of their meritocratic world. They have an older sister who is able to laugh at herself, ask for help when she needs it and apologize when she does something wrong. They have an older sister who is far more interested in relationships than in winning, far more likely to encourage them than compete with them.
Penny is pushed and encouraged in ways she would not be without her younger brother and sister. Marilee and William are exposed to a different way of being in the world other than their own, one that does not abide by the same measurements or goals. As a result, they are also pushed and encouraged to develop a more expansive understanding of who belongs, who matters and what it looks like to live in mutual loving dependence upon one another.
October is Down Syndrome Awareness Month. Watching our kids grow up together only makes me more aware of how much we all need each other.
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