A Practical Guide to Down syndrome and Special Needs Parenting
Dear Parent, Did your child notice that mine is different? Maybe we saw you on the playground and he didn’t know how to react when Grace got a little too close before saying “hi!”. Maybe Grace is in your child’s class, and they came home mentioning that she wears headphones when she gets overwhelmed by... Continue Reading →
Do you have one of those ugly voices? Not the one you use to belt out your best rendition of Mariah Carey. I'm talking that nasty voice inside your head that questions whether you're a good enough parent, berates you for the mistakes you've made, and convinces you that your child will forever be scarred... Continue Reading →
As we prepared for Grace's kindergarten IEP meeting last year, we were all coping with a very new, terrifying global pandemic. Several of the staff hadn't even been able to meet with Grace for evaluations because schools had abruptly closed just weeks before. More than ever, I felt the need to humanize her for the... Continue Reading →
**Special note: this post includes lessons I learned while my infant daughter was hospitalized at Christmastime. If you have an ill loved one or are sensitive to related content, you may want to skip this one! ** Christmas this year won’t look like Christmases past. Hopefully, it won’t look like Christmases future, either. But there... Continue Reading →
It took me more than six years of parenthood to prioritize self-care in my life. Like you, probably, I’d heard about it many times. I could rattle off lists of common activities that would constitute self-care. And I perpetually promised myself I would prioritize it - as soon as I had time. I can’t be... Continue Reading →
I had one item left on my very modest summer bucket list: a local hike-in swimming hole. It was the last day before school, and we finally got out of the house hours later than I’d planned. We ran into both obstacles I’d hoped to avoid: lots of people and a sky full of dark... 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 →
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 →
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 →
The Extra Life 