Fragile X Syndrome
Will You Love My Son?
I suppose it’s every mother’s dream and nightmare all tied together in one shiny package: that one day someone might love her son (insert “daughter” here if it applies!) enough to capture his heart. We worry that our son might return this person’s affections, loving us a bit less, or a bit differently.
Originally published by The Ruderman Foundation 11/20/2014
Why I’ll Send My Son with Fragile X to School on Sukkot
I am sending my 5-year-old son to school on the holy days of Sukkot. It will be the first time we’ve ever done this, and the decision is killing me.
Originally published on Kveller 10/14/2016
How Headphones Literally Saved My Son with Fragile X During a Family Outing
We got out of our car at the aquarium, and before we even reached the entrance, I knew we had made a mistake.
Originally published on Kveller 1/3/2017
What a Candle, Spice Box, and Grape Juice Can Really Do for Your Family
I’ve always been a big believer in the family Shabbat experience. In our family, we light Shabbat candles together every Friday night in our dining room (a room our boys so rarely eat or play in that they actually call it the “Shabbat room” since that’s what we do there). We sing “Shabbat Shalom” and give high fives and kisses to everyone.
Originally published on Kveller 12/18/2015
My Son Has Fragile X Syndrome–And a Surprising Connection to Prayer
When my son wakes up in the morning, he immediately asks for two things. First, he needs his chart, a small white board with two strips of Velcro and tiny laminated pictures that he organizes with his morning routine. Second, he needs his “benscher book,” the once-beautiful-now-torn-and-chewed-and-duct-taped book of Jewish songs and prayers that we gave to guests at our wedding long before our son was a twinkle in my eye.
Originally published on Kveller 2/26/2015
Fragile X Awareness
In our world of parenting a child with special needs, all you have to do is say "Holland" and everyone knows you are dealing with challenging days and lost dreams.
Originally published in the Jewish Week 7/2/2014