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.
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.