What’s it like to grow up with a sibling with Down syndrome?
“Are they twins?” the woman asked me in line at the checkout.
My precocious 2-year-old with blonde curls and a big smile sat content in the shopping cart while her big (yet petite) 4-year-old sister, Kate, smiled and snuggled against her.
“No,” I replied gently, “But I get that all the time. They’re 21 months apart.”
Twenty-one months may be between them — but that’s all that keeps them apart. The rest of the time, they’re almost inseparable.
In many ways they are like little twins — similar sizes and hairstyle, sharing clothes, playing constantly, bickering at times. When they were younger, they even had their own “twin speak:” a demonstrative, secret babble language that only they seemed to understand. (Though we now understand their conversations better as they’ve both grown older.)
Their bond is one that I, an only child and mother of 4, love to observe for many reasons. It is a bond of sisterhood that both comforts and fascinates me — as does the relationship between all of my children. It is also one that I couldn’t imagine just four years ago.
You see, when Kate was first born with Down syndrome, I wasn’t sure what our family would look like or how it would continue to grow. Kate had a big brother — but would we have more children? If we could, should we? I had always dreamed of having a big family — would a Down syndrome diagnosis affect that? All families have many unique, personal reasons for their family size, would having a child with special needs affect ours? What would those sibling relationships look like?
Shortly after those questions came to mind, I read a study that surveyed hundreds of siblings to find out how they felt about having a brother or sister with Down syndrome.
The results included:
More than 96% of siblings indicated that they had affection toward their sibling with Down syndrome.
94% of older siblings expressed feelings of pride.
Among older siblings, 88% felt that they were better people because of their siblings with Down syndrome.
More than 90% plan to remain involved in their sibling’s lives as they become adults.
Those statistics were encouraging — but what has been so much more encouraging? Our own experience. And not because our other children treat Kate particularly special — but because she’s just one of the bunch, loved and accepted for who she is.
Her big brother is a pal, protector and sometimes pest, as big brothers are. Her little sister is her best friend and also a stealer-of-toys who teaches Kate to stick up for herself and develop an independent spirit. Her youngest sister — the baby in the house — brings out her nurturing side, as Kate loves to hold her, hush her, sing to her and softly stroke her face.
These little people by her side support her, while spontaneously challenging her to be the best she can be — and she does the same for them.
Since writing this blog, I have received many lovely notes from parents of children with Down syndrome — but I have especially enjoyed notes from siblings. The ones who confirm everything the aforementioned study shared with their own stories of growing up side by side with a sibling with Down syndrome.
Full of pride and doting, their encouraging notes have told me that their sibling with special needs “brings out the best in them.” That their time with their sibling with Down syndrome has been “the best time of their life.”
Some siblings have gone on to pursue careers in fields helping those with special needs. Others joyfully help care for their sibling. Others have shared heartwarming stories of how life is more meaningful. But all of the stories are love stories. They are words laced with selflessness, joy and a unique perspective that have shaped their own lives.
I am asked often if my two little girls are twins — a comparison that makes me smile. Because they’re right — my two little girls are so much alike, even in a world that often only sees Kate’s differences.
And isn’t that the beautiful thing about family? We are all so very different — but in the family ties that hold us close, we have the opportunity for the closest bonds.
And the greatest love.
