Families tell of life with Down syndrome
September 13th, 2008From the Washington Post:
As a result of Sarah Palin’s candidacy, parents of children with Down syndrome are suddenly in the spotlight. They say they spend more time in doctors’ offices than most parents, endure stares from strangers, and are forced to advocate on behalf of their children. At the same time, they say that “raising a child with a disability can also unlock profound and uplifting truths about themselves, their children and the value of life in ways that others could never see.”
Philip and Adrianne Pedliken of Vienna, Virginia, say they love their son Ethan deeply, but “acknowledge that their lives are much harder, more emotionally wrenching and often lonely.”
Many parents also talk about how the phone never rings with invitations for a play date for their children or an offer to help carpool. Sometimes, they find themselves answering people who suggest that their child should never have been born.
… Just this summer, the (Pedliken) family succeeded in toilet-training Ethan, who will be 10 next month. Until then, nothing — strategies of behavioral therapists, covering the house with plastic sheeting — seemed to work.
“It was frustrating, not to mention expensive, to be diapering a child until he was almost 10 years old,” Philip Pedlikin said.
See also related story in the Washington Post: What is Down syndrome?
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on Saturday, September 13th, 2008 at 6:49 pm and is filed under Campaign 2008, Down syndrome, abortion, advocacy, parents, personal stories, prenatal diagnosis, quality of life.
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September 15th, 2008 at 11:27 am
Hi,
I also have a son with Down Syndrome. He is as typical as his older brothers were at this age. His delays (slight gross motor delay/ speech delay at 2 years old)), are quite mild. We do not spend more time at the doctor’s office. He is almost ready to be potty trained, and I expect he will accomplish that at the same time as his peers. He is the light of our home, and everyone who meets him loves him.
Why do we always hear these types of stories about children with Down Syndrome? I know lots of children with Down Syndrome, and they certainly do not all have these delays any more than all children without Down Syndrome are autistic, or diabetic, or whatever countless issues parents face with their children.
I’m sure we can find families with “typical” children who live with unspeakable struggles, and report only on that segment of the population, thereby making prospective parents wonder if they can handle a child of any kind!
This is an unfair media bias, and I wonder, really what is behind it? Maybe if you show the thousands of families with a child with Down Syndrome that are living a perfectly normal life, we could as a society not be so blasted scared of a diagnosis that should not be terminal for the baby.
September 14th, 2008 at 7:11 pm
I, too, like Ana am also one of those families who feel blessed beyond words to have be raising my daughter Lily who has Down syndrome. I also found out prenatally and went through everything as a single parent who had been laid off at my previous job of 9 years when I found out. My daughter Lily is amazing and attends preschool and is incredibly bright! Our life is not sad and filled with gloom. Has it been the easiest life at all times - of course not at all times, we have had our share of ups and downs, but it has by far been the most rewarding accomplishment I have ever had in my life!
Everyone who has met Lily is a better person because of her! And she has opened minds and hearts everywhere she goes. She is my teacher and I am grateful everyday of my life that I am a part of her journey. And I would not ever paint our picture of our life together black, but, a beautiful rainbow full of every bright color there is to be had!
September 14th, 2008 at 10:22 am
There are plenty of families with children with Down syndrome who are not having a heartbreaking lonely time of things. And who are not going through anything emotionally heartwrenching and difficult and who are actually having quite a good and easy time with things!
i can attest to this because i am in one of these families, i am the mother of a daughter with down syndrome.
and our lives our really happy and we are not struggling because of Down syndrome in any way.
and there are many many more of us out there whose voices are not being heard.
instead the media wants to pick up these sob stories over and over again.
i am sick and tired of this bias.
no wonder so many women abort with only the depressing stories being told.