Are Children With Down Syndrome “Special”?

I tend to balk at generalized statements about kids and adults with Down syndrome. There’s a part of me that resists on theoretical grounds–I don’t want to stereotype or treat people with Trisomy 21 as if they are in a separate category of human being. But there is also a part of me that resists on practical grounds. “They’re stubborn,” for example, doesn’t describe Penny at all. Her brother takes the prize for irrationally holding his ground in our household. When Penny doesn’t get her way, she tends to shrug her shoulders and change course. “They’re angels” is another one that doesn’t quite fit this child of mine. She comes home from school and tells me, with another shrug of those shoulders, “I hit three friends with my lunchbox today.” She whines and complains along with any other kid I know. Wonderful, funny, beloved, yes. Angel, not so much.

But recently I’ve been wondering about a few other words I often hear about  people with Down syndrome. First, “sweet and loving.” I have to admig, Penny’s empathy meter is off the charts. If one of her siblings is crying, her eyes well up with tears. If she knows someone is hurt, she’s the first to remember to pray for them. Take our babysitter for instance, who broke her foot a few weeks back. A few days ago, around 6:30 a.m., I heard Penny get out of bed and shuffle into the kitchen. She came back a few minutes later with a handwritten note: “I hope your foot feels better. Love Penny” (see the photo for her creative spelling). It was the first thing she had thought of upon waking. And the stories like that go on and on. Sweet and loving might not describe all people with Down syndrome, but they describe our daughter pretty well.

And then there’s “special.” I looked it up in the dictionary, which told me that special means “of a distinct or particular kind of character.” A later definition reads, “distinguished or different from what is ordinary or usual.” I think I know Penny too well to think of her as “special.” She doesn’t stand out to me among our children. I see her particular gifts and her particular weaknesses, but I see William’s and to some degree Marilee’s too. Maybe I see them all as “special.” But throughout her life, other people have insisted that Penny is indeed special, in a way that is hard to define. There was the babysitter who described their time together as a “spiritual experience.” Or my friends who say they aren’t “kid people” and yet long to spend time with Penny again. Or the people who have met her once and remember her name and details about her life because she made such an impression. I’ve never really understood what these people were getting at, why they were so enamored with Penny in particular.

I met a little girl with Down syndrome last week, and I think I had a glimpse of what these friends of mine have experienced with Penny. We only had a few moments together, but I would have gladly spent the whole evening in her presence. It was hard to understand her words, but she was able to communicate something else. Maybe it was that I felt delight, or total acceptance. She welcomed me without question. Our brief time together ended with a kiss on the lips. And as I tried to describe her later, all I could say was that she had an ineffable quality. Ineffable, according to the dictionary, means “incapable of being described in words,” and that’s true. The second definition reads, “not to be spoken because of its sacredness.”

I don’t know if there is something particularly sacred or set apart about Penny or about this little girl I met or about other individuals with Down syndrome. But I know my experience is not mine alone, and I know that the word “special,” much as it can be used as a catch-all politically correct term, might be the best way to try to sum it up. I know that I am particularly grateful for my encounter with a little girl with Down syndrome at a dinner party last week, and overwhelmed with gratitude that Penny–in all her particular beauty and brokenness–is our daughter.

About Amy Julia Becker

Amy Julia Becker writes and speaks about family, faith, disability, and culture. A graduate of Princeton University and Princeton Theological Seminary, she is the author of Penelope Ayers: A Memoir, A Good and Perfect Gift (Bethany House), and Why I Am Both Spiritual and Religious (Patheos Press).

Comments

  1. Anonymous says:

    I think the definition of “special” is right on when it comes to these children. “Of a distinct or particular kind of character.”

    When I see my Emily, I see my beautiful daughter. Full of laughter, smiles, temper tantrums, hugs, kisses, stubbornness… all the things I saw while raising my other children but I also see compassion beyond her 4 years and like you said, empathy. During a play date yesterday, a little boy hurt his fingers and started crying. Emily’s eyes filled up with tears as if it happened to her.

    We live in a pretty self-involved world and these children remind us of who we should be. I think these kids know more about what life should be about then most of the adults in the world. If more people had their compassion, can you imagine how much better off things would be? If people cared about each other the way these kids teach us?

    Every time I meet someone who has DS, I’m reminded to try to be a better person. They don’t have to tell us to do that, they show us in their actions.

    Special? Yep!!!

  2. It’s like I always tell people when they use those terms about our son; all children are special…and a ‘gift.’ Having Down syndrome doesn’t make a chid any ‘more’ special or an even better ‘gift.’ I wrote a post recently about how all children born with Down syndrome aren’t ‘angles,’ as we often get the ‘he is an angel’ comment. :) http://noahsdad.com/down-syndrome-angels/

    • Stella McLeod says:

      That reminds me of when my oldest daughter Maureen, who has DS and was then aged 19, took part in “Dancing with the Staff” (students paired with teachers, raising money for charity) and after her waltz one of the judges commented that Maureen was an angel. Much to everyone’s amsement, quick as a flash, Maureen replied, “Mrs … I’m not an angel!”

  3. funny…i ‘happened’ to come to this site today to check it out…and lo and behold our ‘lip kissing’ Sarah is mentioned- great gift. Sure enjoyed our conversation and springing off of some of what we talked about as we head into an IEP next week. Hope the conversations can continue…will keep checking out your post North Carolina reflections.

    • Amy Julia Becker says:

      Kathryn, I hope the conversations can continue too. I was only half kidding when I said we should plan a family vacation! Thanks so much for coming to town. It was a great blessing to me to be with you all. AJ

  4. Marcie Weiler says:

    I don’t have Down’s but I had Polio at 3 1/2 months old, my daddy died a month later leaving my 34 y/o mother with 4 children under 10. I have gotten comments all my life about how cheerful I am even when having surgery, broken bones, arthritis pain (I’m 60+ now with post polio and steadily sliding down a very slippery slope physically) and just life in general when you get thrown a curve ball.

    My personal experience and opinion (for what it’s worth) is that ANYONE with a “pecularity” IS special. Not to us, not often to our family and friends, they know us in good and especially bad days. But the sheer indominatable spirit we have to keep going and ignoring our “pecularities” are gifts from God. I’m not puffing myself up, but I have begun to accept that we touch people who are not close to us in unimaginable, inexplicable ways and THAT is God’s gift to others through us. We are only the vessel for God’s touch and that is a gift to be open and willing and still in an active way for God to fill us up with whatever whoever we pass by needs.

    I was told once, 40ish years ago that I could be a crippled person or a person who is crippled. I’ve tried my best to be simply a person who is crippled.

    Here endth the homily.

  5. One observation I can make is that they receive a bunch of unconditional love and acceptance–far more than many others get. Truly blessed are the poor in spirit. Since it is easier to recognize that they will never “make it” on most of the scales we usually use to assess each other, people choose to honor them irregardless from the very beginning. That can be a blessing and a curse. It makes it easier for them to be sneaky and take advantage of the good will they are given (I love the “I hit three others with my lunchbox today” Sounds familiar.) But it also means that this good will is their normal everyday expectation and they give it back without hesitation.

    Katie also has an unbelievable sense of empathy, cuddliness and kindness, but lately has been hitting her closest classroom friend when she gets frustrated. Sometimes it’s because she doesn’t have the words to say what she needs to say. Sometimes it’s just because she has a short fuse. She’s also got the cutest laugh in the world–and it’s not so easy for her friends and teachers to hold her accountable when they’re laughing with her–and she knows it. They use what advantages they have.

    One thing I saw in the DS research lately was that they tend to have issues with reading facial expressions and assume people are happy with them in absence of any evidence to the contrary, at least while they are young. I’m not sure that happens later–many have issues with depression in their adulthood: a concern to pray about for later…

  6. Allen Blevins says:

    The parents of a down child I once knew explained that Mikko’s innocence was always that. The innocence of a small child. Christ said “Suffer the little children to come unto me for such is the kingdom of heaven” . They felt blessed to a representative of the kingdom in their daily midst.

  7. I always have struggled with the term “Special” for all the reason’s you describe. I think the reason that it irritates me is that we have to fight so hard to have an “ordinary” life. We don’t want “special” for our kids, just ordinary- ordinary schools, ordinary homes, ordinary jobs, ordinary friends and ordinary lives. My daughter is 24 and I think all my “kids” (yeah they are young adults now, lol) are special. On the other hand, there is that ineffable quality that is beyond description and never ceases to touch my heart.

  8. Hi, We had a son Thomas ( Tommy) who lived to be 25 1/2 yrs old…Yes he was Down Syndrome and suffered a stroke before birth a rare thing but didn’t slow him down when the bone specialist thought he would never walk because of it. At six yrs old he proved that doctor wrong..only thing was he couldn’t speak! Everything else was fine …they said he was severely mentally disabled but to us he sure had smarts on somethings …I call all special kids …God’s Specialties mainly because they truly are! God’s bless those that call for them and God Bless our Specialties!!


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