So Extra

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 →

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After This

“After this, story, then calendar…then goodbye song,” she says before looking up with an eager smile, “THEN LUNCH!” Each day during virtual preschool, this is how Grace repeatedly rushes through every step in her visual schedule in anticipation of her favorite part. We all want to get to the good stuff. Or the better stuff.... Continue Reading →

Yoga for all ages

I’ve been struggling to decide what, if anything, to post during these difficult times. So, please remember that if your family is just trying to get through the day, You do You! And if that does not in any form include yoga with your kids, ignore this post. I have always found physical and emotional... Continue Reading →

Music to get them moving

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 →

You do You

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 →

How we prepare for doctor’s appointments

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 →

How to Serve a Hospital Family

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 →

How I Became a Hospital Mom

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 →

Why I Love Social Stories

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 →

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