Akron Children’s Hospital: Great for everyone, invaluable for frequent flyer

They say it’s impossible to know how good your homeowner’s insurance really is until you file a claim. The same can be said of your local hospital. Until 2012, I had only a handful of experiences at Akron Children’s Hospital. When he was in the second grade, Jules was tested and diagnosed with dyslexia at […]

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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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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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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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