Grateful for Down Syndrome?

Penny completes her gymnastics routine

It’s not true across the board, but a remarkable number (dare I guess, a majority) of people who have children with Down syndrome seem to believe that their children are indeed special, in the positive sense of that word. Other parents say things like, “Our whole family has become more peaceful since he’s been in our midst” or, with a smile of wonder, “There’s just something different about her” or, “He seems to be able to love without a filter.”

I used to resist the positive generalizations about kids with Down syndrome, the talk of “them” being “angels” or “so loving.” I still resist it a bit, both because there are plenty of days when Penny whines or pushes her brother or crosses her arms and refuses to offer a hug, and also because those categorizations often gloss over the full humanity of people with Down syndrome, as if that extra chromosome doesn’t involve struggle and hardship and even at times suffering for everyone involved.

My friend and fellow Patheos blogger Ellen Painter Dollar and I have had a running conversation about this tension between the “good” and “not good” aspects of disability. Ellen has Osteogenesis Imperfecta, and she can say, categorically, that she “hates” her disability. Has good come of it? Certainly. But at its core, OI has caused brokenness and suffering. Period. In a blog post, “Do I Hate My Life? No. But I Do Hate My Disability,” Ellen writes:

… when OI punches us in the gut—when it shoves our lives off-kilter with a new fracture and the emotional despair that accompanies it, when a sore and swollen knee awakens the fear that someday I’ll no longer be able to do the physical work involved in caring for my family—then, yes, I hate OI. Passionately.

And I’m not the only one. I have numerous Facebook acquaintances with kids with OI. When one of those kids has yet another broken bone, quite often what their mom or dad has to say about it is, “I hate this disease.” Sometimes with a profanity or two thrown in for good measure.

I don’t feel the same about Down syndrome.

In fact, I have come to believe that there is something categorically good about Down syndrome. Plenty of my fellow parents would disagree, but many would nod their heads. I recognize many things about Down syndrome that are not good–in Penny’s case they range from innocuous issues like flat feet and small ears to more serious problems like impulsivity, and of course for others they also run the gamut that can include childhood leukemia and really severe heart defects. And yet I continue to believe that there is something about Down syndrome that is good, that prompts love and joy and laughter and brings people together. It’s much harder to quantify or articulate, and yet I suspect it is true.

Last night, as I was putting Penny to bed, I made a list of things she had done that day that made me feel proud. She read Pinkalicious out loud to me in the morning. She did the monkey bars almost all by herself for the first time. And she tried to be a helpful big sister. This litany of praise came after I found her up in Marilee’s room. Marilee had been screaming, and I stood outside the room, listening to Penny, “Marilee, Marilee, where’s your passy? Oh, silly goose, it’s in your crib. Pick it up and put it in your mouth. Sweet girl. You need to stop crying.” Then a pause as Marilee settled down and Penny turned to walk away and Marilee started crying again. And then Penny’s voice, “Marilee. How will I go to bed if you don’t stop crying?” I finally intervened, we sang to Marilee together, and I took Penny back to bed.

I wouldn’t say that Penny’s reading, monkey bars, and comfort to Marilee came in spite of Down syndrome, and I wouldn’t say they came because of it either. I don’t know if I can say I am grateful that Penny has Down syndrome. But I can say that I am grateful for who she is, exactly as she is.

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. I believe that so many of us (the parents) are given all the negatives when our children are given a DS diagnosis, that we tend to celebrate all of the things that many take for granted. We have celebrated her accomplishments with cheers but also with quiet reserve. Our Spencer has such a vibrancy to her that you cannot help but be affected by her. We have learned far more from her than she could ever learn from us. Spencer is not perfect by any means (what child is???) but she is exactly who she is supposed to be! We would not change her for anything and we are grateful for the lessons she has taught us as her parents and family.

  2. Although my three daughters with Down syndrome are not always happy, they do seem to be predisposed to be happy. It is as if they wake up in love with each day. And, yes they also seem to be more empathetic than the average person. I, too, avoid stereotypes but it is hard to deny these qualities, both of which I am grateful for.

  3. Penny’s care for Marilee is precious, AJ, and quite mature in a sense. I mean really, how many times did I look at my kids and think “How will I go to bed if you don’t stop crying?” For her to be able to articulate that shows insights a lot of parents would envy.
    Tim

  4. Thanks for this message today, I really needed to hear some awesomeness!

  5. Mark Leach says:

    Almost reflexively, medical professionals dismiss materials like the booklets from Lettercase.org as portraying an image of a life with Down syndrome as “too positive.” These same professionals routinely state they only rely upon evidence-based medicine. The evidence, i.e. the studies of families and individuals with Down syndrome, however, demonstrate that, in truth, a life with Down syndrome is “too positive”–they are loved more, and those with DS report loving their life far more than those with only 46-chromosomes.

    That said, Amy Julia, I smiled when I read Penny saying “silly goose.” My Juliet has been making her teachers and classmates laugh with that comeback since kindergarten.

  6. One of the things about Down syndrome that is good is that it makes the rest of us so much better than we were before they were born.

  7. In a graduate school class on Learning Theory and Learning Styles, we read about Gardner’s Theory of Multiple Intelligences. The section on Interpersonal intelligence made me think to jobs I’d have working with adults with intellectual disabilities, particularly people with Down Syndrome. They tended to have interpersonal intelligence in spades compared to the average quote-unquote normal person. Their ability to read others’ feelings to me was at times uncanny.

  8. starrlife says:

    One difference perhaps for me is that many disabilities/diagnoses are “diseases” and are experienced as/are attacks so to speak on the underlying person and I could see that as an intruder to be hated.At least for me, DS is a whole person thing – every cell, every chromosome is expressed uniquely with a lot of “disorders” or medical problems that might accompany it. Those problems I don’t want of course and dislike/hate but the person with her different chromosomes I just can’t see as something I can hate or reject out of hand. Hope that makes sense…. I’m just speaking off the top of my head.
    There does seem to be some kind of universal quality, way of processing the world that many people with DS seem to have that is unique to them – hard to see it otherwise without being too perky about it :)

  9. I have had the honor of working with a variety of people adults, adolescence, children and infants who have had a variety of disabilities. Some of the individuals I worked with exhibited some very violent behavior issues, I E hit, spit, bite, try to poke their eyes out ( a few succeeded), bite off the fingers of their peers etc. The other “extreme” was the very compliant smiling child / young person. They were often supported and accepted to some degree in the faith community. Not so much when it came to the government spending any tax dollars to support this population. That subject often lead to some rather heated discussions and I cant repeat what was said but basically these people were faking it and were freeloaders etc.

    I always saw each of these human beings as people thus each was a “special” person. Even in the midst of being hit, bit, slapped, having feces or urine slapped upside the head I found a way to focus on the fact that these were people trapped in tragic circumstances. Back when I was a “Christian” I use to consider what I did a “ministry”, I have repented of that nonsense after being rebuked so many times. One grows tired of defending one’s “right” to breath “Christian air”. A few things, first the parents and care providers need support, I also do not think the state is the best way to provide that support, I do think it is the best way to monitor and level the support of the nation i e basic standards but not the best way to “spend the money”. People want to give time and money but they are wiry of being asked, and I understand that. Churches cannot save the entire world and should never “feel” like they have to, they can pick one family in their area and help them, one person at a time. Technology can help in connecting needs to one who can meet that need. Try to reach and “love” the ones that have the behavior issues that often isolate them and their families. “Professionals” like myself need to stop thinking we know more then the parents and families, we dont.

    We work for the client, student, consumer, person. We work for them not our agency. I know this sounds like tripe I think the faith community can meet many of these needs and build communities, that is my great hope. Please pray for me I struggle with this and have some resentment to the Christian community. Pray I serve and forgive. Thanks

  10. My son, Mattie (7) is absolutely exhausting. He’s non stop energy and always looking to get into “trouble”. He’s my shadow and wants to be with me ALL the time! And he always manipulates me to get me to do what he wants. And he’s always tells the truth when I ask him a question. Even when it gets him in trouble. And he NEVER judges anyone. He loves everyone for who they are from the inside out. Imagine that? And yesterday on the way home, he looked at me and said “daddy, I wuv you. You my best friend”. Special? You darn right he’s special! In 7 years, he’s taught me more than he can ever learn from me! My wife, Mattie’s sister Lauren, & me are truly blessed to have Mattie in our lives!


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