When Piper was first diagnosed, I was sad. I was confused. And, frankly, I was mad. Mad that, I thought, it meant we weren’t going to be “able” to have more kids. I didn’t think that we’d take “the risk” of having another child with Down syndrome.
As time wore on, we (obviously) figured out that it was hogwash. I remember the night that little light switched in my brain; we were picking out furniture for Piper’s nursery and decided that we should spend a little more and get something nice so that it would last for the other kids. Of course we could have more kids; having Piper first in no way precluded us from expanding our family. Why should it? And if, by some luck of the draw, we did have another child with Ds, we were okay with that.
There are some on the outside who insist that “making” a sibling “cope” with their brother or sister who has Ds is a negative thing. That they will grow to resent them. That it takes too much of the parents’ time away from the “well” sibling.
There’s a wonderful doctor in Boston who specializes in Down syndrome. Dr. Skotko is one of the leading individuals who fight for appropriate representation of individuals with Down syndrome. His work is focused on forming the best medical practices for our kids and helping medical professionals understand more completely what the diagnosis means. He understands the ins-and-outs the way that few people do. But what makes Dr. Skotko so unique? His sister has Ds.
He and some colleagues have recently completed a series of studies that focus on family perceptions of Down syndrome and their feelings toward a family member with Ds. The first was the parents’ perspective, the second was the sibling perspective, and the third was from the perspective of individuals with Ds.
The sibling study was aimed at kids 9-12 years old and 12 years and older. They asked both “on a scale of one to x, how would you rate…” and open-ended questions. In both age groups, the “approval rating” across the board was, well, high. Quoting from the article itself (which is worth the read, if you haven’t):
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The vast majority of brothers and sisters love their siblings with DS and are proud of them.
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The vast majority of brothers and sisters feel that their relationship with their sibling with DS is a good one.
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The vast majority of brothers and sisters would not trade their sibling with DS for another sibling who did not have DS.
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A minority of brothers and sisters feel sorry for their sibling with DS and are embarrassed when among friends or in the public.
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The majority of brothers and sisters are comfortable assuming increased responsibilities, and a vast majority plan to remain involved in their sibling's life as they both age.
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In general, the vast majority of brothers and sisters feel that they are better people because of their sibling with DS.
It should be noted that “vast majority” was 90%+ for almost all areas. We’re talking vast majority here, folks. The typical siblings often have very tight bonds with their brother or sister with Ds (there are some really great blogs that center around that dynamic; this is one of my favs.) Some other studies have shown that, when there’s an individual with Ds in the family, the other siblings are often more compassionate, caring, and have a broader world view. And isn’t that stuff that we all want our kids to be?
And as for our girls? We, obviously, have no idea what the future holds. I don’t know what Adalynn will think of Piper in 5, 10, or 20 years. We hope, though, that they’ll be more in the norm than not. For now, Addy offers Piper nothing but looks of adoration. Piper does the same for Addy, and is already showing signs of being her protector. Piper tells me to be quiet if Addy’s sleeping, to feed her if she’s crying, and always makes sure I remember to get her out of bed in the morning (like that’s ever happened… I’ve decided to tell myself that she’s just eager to see her sister, and not that she’s questioning my parenting skills…)
We’ll do everything in our power to make sure that both girls are loved the way they need to be loved. That they are pushed to the extent they need to be, and have expectations that are appropriate for them. That they both get to do things they want to, but that they also understand what it is to be in a family, and that sometimes that means sacrificing for someone else.
It’s no different than how we were raised. It’s no different than I ever expected to raise our kids- diagnoses or not.
Teaching love and acceptance- isn’t that what parenting is all about?
