{"id":374,"date":"2010-09-22T08:18:42","date_gmt":"2010-09-22T08:18:42","guid":{"rendered":"http:\/\/blog.beliefnet.com\/thinplaces\/2010\/09\/is-it-harder-to-have-a-child-with-down-syndrome.html"},"modified":"2010-09-22T08:18:42","modified_gmt":"2010-09-22T08:18:42","slug":"is-it-harder-to-have-a-child-with-down-syndrome","status":"publish","type":"post","link":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/2010\/09\/is-it-harder-to-have-a-child-with-down-syndrome.html","title":{"rendered":"Is it Harder to Have a Child with Down Syndrome?"},"content":{"rendered":"


\n\"IMG_5692.JPG\"<\/a><\/span><\/p>\n

In a recent Motherlode post<\/a>, I wrote about our decision to
\nforgo prenatal testing for Down syndrome with my third pregnancy. The American
\nCollege of Obstetricians and Gynecologists recommend<\/a> prenatal screening for all
\npregnant women, and I am at “higher risk” for having a child with Down
\nsyndrome, due to the fact that our eldest daughter Penny was born with an extra
\n21st<\/sup> chromosome. In response to my post, many readers wrote about the
\n“burden” that having even one child with Down syndrome imposes upon a family,
\nparticularly in the later years of life as parents age and children with Down
\nsyndrome become adults. It’s easy to use words like “sweet” and “joyful” and
\n“blessings” to describe my daughter, but perhaps those words belie an
\nunderlying reality (present or future) of suffering and hardship. <\/p>\n

My personal experience only goes so far. Penny is 4 \u00bd. I have one other
\nchild, William, age 2. Soon after <\/span>Penny was born, as I was
\ndealing with the shock, fear, and anger that my daughter had Down syndrome, the
\npractical challenges presented themselves. There were the doctor’s visits. I
\nresented my intimate knowledge of the Children’s Hospital of Philadelphia, Penny’s
\nannual trip to the Trisomy 21 clinic, her frequent visits to the cardiologist.
\nWe had special x-rays of her spine in case there was any sign of instability, a
\nhip ultrasound, a brain ultrasound (all were fine). Penny still needs checkups
\nevery six months on both her eyes and her ears. She’s been hospitalized twice,
\nboth related to gastro-intestinal problems. <\/p>\n

It was intense. Four therapists visited our house on a
\nweekly basis. I kept a chart of all the exercises they suggested, and I
\nwrestled with constant guilt when I didn’t cycle through the whole list as the
\nweek went on. And I did choose to let my professional goals slow down for those
\nyears, with the knowledge that both the doctor’s visits and therapy sessions would
\nlikely decrease as Penny grew older. (Other parents don’t have the same
\nflexibility as I did, which doesn’t mean they are forced to choose between
\nworking and caring for their child. The therapists go to the daycare in that
\nsituation.) <\/p>\n

Potty-training was our greatest parenting challenge. Due to
\nlow muscle tone and hyposensitivity (difficulty feeling sensation), it took two
\nyears of accidents and extra laundry before Penny could safely leave the house
\nin underwear. For William it has taken about a month. <\/p>\n

Penny is potty-trained now, although still working on the
\nbuttons on her pants. She tells me she’ll learn to unbutton them when she’s
\nfive. We have far fewer doctor’s appointments, and her therapies happen in the
\ncontext of her publicly funded preschool program.  <\/span><\/p>\n

Now that I have William as a point of comparison, I can also
\nsay that certain aspects of Penny’s early years were easier. She rarely cried.
\nShe slept ten hours at night starting at seven weeks old. Even her physical
\nlimitations sometimes came in handy. I never had to worry about her climbing
\nonto a bookshelf and pulling it down on top of her. She was more cautious than
\nhe, so it was William who ended up in the Emergency Room<\/a> for five stitches in
\nhis ear when he was 13-months old. And parents of adult children with Down
\nsyndrome often comment upon the fact that their son or daughter with Downs is
\nthe “easiest” of the bunch. Although the individual stories will vary (as the
\ncomments on my original post made clear), the overall portrait of family life
\nwith a person with Downs in the mix is a positive one. Harder in some ways,
\nyes. But good. <\/p>\n

It’s hard to specify the joys that come from a child with
\nDown syndrome. Perhaps I experience even greater pride in her accomplishments
\nbecause they once seemed impossible. But my joy as a mother comes, like it does
\nfor any parent, from the small moments of wonder and beauty and human connection.
\nI think of Penny’s first ballet class. She kept up with the other kids,
\npointing and flexing and learning first position. At the end of class, as I was
\ntrying to usher her out the door to our next appointment, she tugged on my
\nskirt. “No, Mom,” she said, “I need to say thank you to my teacher.” Maybe
\nthat’s a sign of good parenting, although I hadn’t prompted her in any way.
\nMaybe it’s because of Down syndrome; none of the other kids went back to give
\nthanks. Or maybe it’s that Penny is her own person–with strengths and
\nweaknesses, challenges and gifts.<\/p>\n

I know, I know. I’m just na\u00efve. As Penny grows up, she’s
\ngoing to face the real challenges. According to much of the literature about
\nDown syndrome, and echoed in many of the comments by readers of my original
\npost, I will change my tune when she can’t live independently. It is at best
\nuncertain whether she will go to college or get married, and very unlikely that
\nshe could have children of her own. She may not be able to fully support
\nherself financially. She has a high likelihood of developing Alzheimer’s at an
\nearly age. <\/p>\n

Penny is vulnerable. She is limited. She is needy. That’s
\ntrue of all babies, and to some degree all toddlers, and yet it is also true of
\nmany adults with disabilities. Having Penny in my life has made me wonder,
\nthough, how true those words–vulnerable, limited, needy–also are of me. <\/p>\n

Sure, I went to college and I have skills that can produce
\nincome for our family. And yet I have had to unlearn one of the things my
\neducation and productivity taught me. Through Penny, I have come to realize
\nthat interdependence is constitutive of my humanity. That it is a gift to me
\nwhen I need other people, when I form relationships of mutual giving and
\nreceiving. Similarly, it is a gift when I am able to offer myself in service to
\nothers based on my particular abilities. Having Penny, and interacting with
\nother children and adults with disabilities, has changed the way I see the
\nworld. Instead of categorizing into able and disabled, I see us all as
\ninterconnected. And I believe that every person has something to teach me, just
\nas I have something to offer in return. <\/p>\n

Is having a child with Down syndrome harder? I suppose the
\nanswer is yes. And yet the largest source of stress associated with having Penny
\nin my life has nothing to do with her particular needs. Rather, it comes from
\nknowing that our daughter is entering a world in which people assume they know
\nher abilities (or lack thereof) simply by looking at her face, with its flat
\nfeatures and extra fold of skin around her eyes. The hardest thing about having
\na child with Down syndrome is knowing that there are people who would compare
\nher to a dog (as one reader did in a comment to my original post), and people
\nwho assume she takes more from us than she will ever be able to give, or that
\nshe is a “cross to bear” (the religious version of the same sentiment). <\/p>\n

I have the privilege of being the mother of a child with
\nDown syndrome, and through her, being introduced to a world of people who have
\ntaught me more about what it means to be human than my education and productive
\nlife skills ever could. Harder times may come, but I cannot imagine a day when
\nI would regret her presence in my life, or in our community.<\/p>\n

<\/p>\n","protected":false},"excerpt":{"rendered":"

In a recent Motherlode post, I wrote about our decision to forgo prenatal testing for Down syndrome with my third pregnancy. 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Two major life experiences have shaped her writing and her faith\u00e2\u20ac\u201dcaring for her mother-in-law as she battled cancer and welcoming her daughter Penny into the world after she was diagnosed at birth with Down syndrome. Both experiences expanded and enriched her understanding of what it means to be human and to receive each and every person as a gift.\u00c2\u00a0 A graduate of Princeton University and Princeton Theological Seminary, she is the author of Penelope Ayers: A Memoir, and the forthcoming A Good and Perfect Gift (Bethany House). Her essays have appeared in First Things, The Philadelphia Inquirer, The Christian Century, ChristianityToday.com, and Bloom, among other online venues.","sameAs":["http:\/\/amyjuliabecker.com"],"url":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/author\/amyjuliabecker"}]}},"_links":{"self":[{"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/posts\/374","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/users\/88"}],"replies":[{"embeddable":true,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/comments?post=374"}],"version-history":[{"count":0,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/posts\/374\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/media?parent=374"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/categories?post=374"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/tags?post=374"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}