A Practical Guide to Down syndrome
I’m so EXTRA! These were the perfect words adorably emblazoned on the shirt a friend made* for my daughter, Grace. Grace is extra adorable (my unbiased opinion), empathetic, and persistent. She also happens to have an extra chromosome. As parents of kids with Down syndrome, we are eager to share that this makes our children... Continue Reading →
How are you hanging in there as you're hunkering down? I've been trying to start each day with some movement for my girls and weave it in throughout the day. Because, of course, it is healthy and builds good habits in their developing bodies and minds. And also, my sanity. As the weather has made... Continue Reading →
I have thought about writing this post many times, but I didn’t want to add to so much of what is entering my brain as noise these days. Namely: The virus which must not be named. Forced homeschooling.Toilet paper.The shoe-in for the words of the year (nevermind that it’s only March): social distancing. What the... Continue Reading →
Photo by 🇸🇮 Janko Ferlič on Unsplash “And It’s not going to hurt. Mama will be with me the whole time.” Grace repeated this line probably eight times at a recent audiology appointment, and I beamed with pride. We have attended innumerable physicians’ appointments over the years. If you have a loved one with DS,... Continue Reading →
Photo by Matheus Ferrero on Unsplash If you are a member of the Down syndrome community in any capacity, chances are you’ve been touched by a family who has spent time in the hospital or cared for an ill loved one at home. From congenital issues like heart defects and vision problems to the increased... Continue Reading →
I have slept 72 nights in children’s hospitals, all of them as an adult. The longest stint, 58 nights, was our first. It all started days before Grace’s three-month birthday. I handed her barely eight-pound body over to a cardiac anesthesiologist for the surgery we’d been awaiting with dread since we received her congenital heart... Continue Reading →
In a special needs group on Facebook recently, several parents were discussing how social situations that are new, loud, crowded, or unfamiliar can be especially overwhelming for loved ones with Down syndrome. This has been the case in our family, too. In my experience, reacting to these situations is rarely successful. When Grace gets overwhelmed... Continue Reading →
Sometime around age three when Grace started attending preschool, something shifted in her. She was testing her boundaries. She was saying "no." She was exercising her free will (gasp!). On the one hand, yay! This is developmentally appropriate for a three-year-old. On the other hand, having a child who no longer acquiesces to her mother’s... Continue Reading →
Last week I talked about the Down syndrome behavioral phenotype and what it is (and is not). That cliffhanger brought us here wherein I’ll discuss characteristics of the phenotype in four major areas: cognitive, speech and language, social, and motor skills. Hyperlinked text below will take you to websites with definitions, and often usable... Continue Reading →
Stereotypes about Down syndrome are frustrating, and the one I am often most shocked by is the assumption that all people with DS are the same. I try to give people the benefit of the doubt because before I had Grace, I didn’t know anyone with DS. I believed things then that are so obviously... Continue Reading →
