A few words about Down syndrome

With our daughter Lyra’s birth, we learned, among many things, the importance of language when discussing her diagnosis. In my lifetime, using the word “retarded” to describe a person with Down syndrome has become entirely unacceptable. I understood this perhaps as early as the 1970s. However, I still used the word to describe nonhuman things […]

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Flyer for Lyra’s classmates

Many families make flyers to send home with the classmates of their children with Down syndrome. I’ve seen several made by friends of ours, who helped us with ours. Rather than wondering if Lyra has Down syndrome or why one student in the classroom receives extra assistance, a flyer gets in front of the proverbial […]

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Lyra’s Eyes at Three

Whoopsie Piggle can be found on “Down syndrome Blogs,” a site that aggregates Down syndrome blogs by category. One of the categories where Whoopsie Piggle is listed is “Dual Diagnosis” because Lyra was born with congenital cataracts in both of her eyes. Since her birth, the idea of my child being blind has been far more […]

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Presume Brilliance

Two years ago when Max and I attended our first National Down Syndrome Congress (NDSC) convention, Lyra was 11 months old and I was panicky. I felt we had a small window to engage her mind, teach her body to move optimally, and lay the groundwork for speech intelligibility. We left our first convention with lots […]

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A Year After a Painful Week

It has been a year since I wrote “A Painful Week in the Down Syndrome Community,” about three toddlers who died. Two left suddenly: a boy who contracted meningitis, unrelated to his Down syndrome, and a girl who suffered complications from a second heart surgery. Both of their families have created non-profits in honor of […]

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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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A Few Words About Down Syndrome

Dear Young Mamas of Children with Down Syndrome: As you all probably know, it is more likely for a woman my age (46 when I had my daughter Lyra) to have a baby with Down syndrome than it is for those of you in your twenties or thirties. But because more women are having babies […]

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What Suffering? The Down Syndrome Advantage

I see you and Max acting so bravely, but nobody asks for a child with Down syndrome. I recalled those sugar-coated words of sympathy, spoken by a relative of ours a few weeks after our beautiful, healthy daughter was born, when I read of Richard Dawkins’ advice to an expectant mother. Dawkins is an Oxford professor of evolutionary biology […]

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Nothing to Fear: Human Rights for People with Down Syndrome

Sarah and I were in Pittsburgh for Quilt Market where we stayed at the downtown Westin. When the elevator stopped on our floor there was a man dressed in business attire already on it. I looked over at him and could see tears welling in his eyes. By the time we got to the second […]

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Would I Cry?

When he was a senior in high school, my eldest child, Claude, called me a bad-ass mother (which I mistakenly took as pejorative until he explained the parlance of his generation). It’s true, my parenting mantra is “push and support.” So why, in the two years since he graduated high school, have I cried like a melodramatic helicopter mom at […]

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Part 3: After a Dying Week

I should be packing. I leave in less than 48 hours to join my oldest son, Claude, in Spain for two weeks of backpacking adventures. It usually takes me one to two weeks to write (and re-re-re-re-re-write) an essay before I’ll post it and yet this essay is the third this week that I’ve written, […]

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Part 2: Defining and Defying: Discrimination of the Developmentally Disabled

Yesterday, I wrote about three babies in our Down syndrome community, all the same age as our daughter, Lyra, who died in the same week. One of the deaths sparked many national discussions on the issue of organ transplantation and whether or not people with disabilities are equitably placed on transplant lists. While touching on the issues of […]

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Part 1: A Painful Week in the Down Syndrome Community

Real Community, Virtually When Lyra was four months old, I met a woman at a meeting for new parents of children with Down syndrome. A few weeks later, she sent me an invitation to join a Facebook group titled “(’12/’13) Moms with Kids Rockin’ the Extra Chromosome.” I remember thinking the title was a bit […]

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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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Ms. Lyra Goes to Washington #PasstheABLEAct

Scenario One: Imagine you discover that your great-aunt, who recently died, left you $3,000. She had not told anyone she planned to leave you a small sum of money and so it comes as a complete surprise to you and the rest of your family. Because she knew you make minimum wage at your job, […]

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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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Lyra’s Latest: Where’s the Poop?

Prescript: In July of 2013 we learned about Fruit-Eze. A jam-like product made entirely of fruit, it worked wonders on the constipation that routinely flared up even after Lyra began taking Synethroid. She has a tablespoon each and every morning. Available online, Fruit-Eze is nothing short of miraculous. Warning: As the title indicates, or so […]

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Lyra’s Latest: Finding a Pediatrician or The Continuum of Jewish Women

The day after Lyra was born, I called my obstetrician, who had willingly provided prenatal care and medical back up for my home birth. And I explained that while otherwise healthy, Lyra appeared to have Down syndrome. Within minutes, I received a call from the pediatric practice she uses for her own children telling us […]

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Learning About Lyra

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

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I See You and You See Me

“Your daughter sees like a newborn,” said her eye surgeon, “even though she’s two months old.” Two months old? Isn’t that the same as newborn or at least, newly born? Well, yes, in terms of adjusting to another child in the household. But in terms of brain development, two months old is, well, getting up […]

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