Busting the Myths on Down Syndrome

This column was published on Ohio.com on May 6, 2017. One column only scratches the surface on the topic of life with Down syndrome in the United States in 2017. For more articles, videos and profiles of adults with Down syndrome, please refer to my public Facebook page, “Whoopsie Piggle,” or my blog of the […]

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Seen as Sick: Conjuring Illness to Deny Full Humanity

“Is there a vagina?” I asked the midwife. After a summer of crop-killing drought, rain fell the day my last child was born. For the first time in two months, we turned off the air conditioning, opened our windows and a soft breeze cleared out the re-circulated air. Sitting on my side of the bed, […]

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Two Years This Daughter

  The first two years with a baby with Down syndrome are a lot of work, but then it all gets easier. I have repeated that sentence, spoken by the caseworker from our county’s DD Board when Lyra was only a few months old, many times over in my thoughts. Lyra turned two years old […]

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Lyra’s Latest: In Need of the Next Map

Our home has been temporarily rearranged. The water bowl for the dogs and cats is now commonly found on the kitchen counter while the bathroom trash cans currently reside atop the closed lids of the toilets. A paper grocery bag containing paper recycling was handily located in the kitchen. Lately it can be found a few feet away in a lower […]

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Comparing Lyra

Historically, I have not been a parent who has put much emphasis upon babyhood milestones. I was not concerned with the boys’ height and weigh percentiles. They held their heads up soon after birth, rolled over by three months, sat at around six months, crawled soon after mastering sitting, pulled up and cruised furniture by […]

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Lyra: Our First Year Together

Lifespans in Life The majority of the Down syndrome blogs are written by families whose child diagnosed with Ds is under the age of three. In an online group I belong to, mothers openly wonder why this is the case and what happens to families who have older children with Ds? I’m pretty sure I […]

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Lyra’s Latest: Fully Human & Needing a Civil Rights Movement

Your daughter was born with Down syndrome. Do not expect her to read, write, do math or ever drive a car. A physician said these words to the parents of a buoyant baby girl, aptly named Grace, in the days after her birth at UC Davis Medical Center. It sounds like something a doctor might […]

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Lyra’s Latest: Baby Doll to Baby

She Awakens “What’s the word you just used?” I asked Lyra’s ophthalmologist. “Myelinate. It’s a coating over the nerves, just like that wire down there,” he said pointing to the floor where a thick cable traveled a short distance from the exam chair I was sitting in, holding Lyra in my lap, to the wall […]

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Changing Expectations: Lyra’s Latest

“I recently read that all people with Down syndrome develop Alzheimer’s in their forties or fifties, is that true?” I asked the pediatric geneticist as she examined our two-day-old baby. A few months earlier, I had read a Newsweek cover story about the care of adult children with developmental disabilities. The sentence about Alzheimer’s had […]

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