Columns

Today is my mom’s 78th birthday, and we are going to celebrate it the same way as if she were still with us. I sent my siblings Dunkin’ gift cards to treat them to coffee, like all of us used to have with her. I will…

There are only a handful of people I describe as “someone you want on your team.” My 17-year-old niece, Linden, is one of those people. Among all the perks of marrying my husband, becoming Linden’s aunt is one of them. I met Linden on her first…

Halloween should be fun and not stressful. However, for many years it was neither fun for us nor stress-free. My daughter, Cammy, has Rett syndrome, and we were faced with how to deal with a child with special needs at Halloween. Cammy,…

A big reason I write this column is because we are now the family I desperately wanted to see when I researched Rett syndrome 11 years ago. I wanted to see a family making it work, and who gave me hope that raising a Rett child was…

When my daughter Cammy was diagnosed with Rett syndrome at 20 months, I thought about all the life events she would never get to do. What came to mind first were the big things — having children, getting married, getting her driver’s license, and living on her own.

At every single curriculum night, parent-teacher conference, and Individualized Education Plan meeting, I cry. But I’m not crying for the reasons others might suspect. Instead, I cry tears of joy and appreciation that my daughter, Cammy, in in such good hands at her school. Handing over a child…

Ribbons of various colors help to increase social awareness of numerous disabilities, illnesses, and causes. Purple is the color designated for Rett syndrome. Governors in several U.S. states have signed proclamations declaring October to be Rett Syndrome Awareness Month. The International Rett Syndrome Foundation (IRSF) has set a goal…

Our little superhero, Cammy Can, was created by an incredibly gifted artist, Jenn Kim, shortly after our daughter, Cammy, was diagnosed with Rett syndrome in 2011. To help Jenn create a perfect superhero, we shared Cammy’s journey, gave her a photo…

My 12-year-old daughter, Cammy, has Rett syndrome. Some days, Rett syndrome has Cammy. During the early-onset stage, which typically occurs between 6 and 18 months of age, children may experience abnormal hand movements, difficulty sitting independently, and speech or language problems. Cammy was no different. Repetitive hand movement…

Do you ever wish kids came with a manual? Well, mine does. The International Rett Syndrome Foundation (IRSF) provides many wonderful tips and hacks for parents to navigate their way through this world of Rett syndrome. For school settings, some parents of children with Rett syndrome provide their child’s…