Author Archives: Jackie Babiarz

We Do Not Talk About Sleepovers

When I was in middle school, I had sleepovers with my friends every weekend. My 11-year-old neurotypical daughter, Ryan, has had sleepovers with her cousins since she was a toddler, and now she has them with her friends. But my 13-year-old daughter, Cammy, who has Rett syndrome, has…

On a ‘Rett Day,’ We Can Only Ride Out the Pain

Some days my 13-year-old daughter, Cammy, has what I call a “Rett day.” I can’t think of another way to phrase it. Rett syndrome has taken Cammy’s ability to speak. She can’t use her voice to talk to my husband and me or let us know what makes her…

With Some Ingenuity, My Daughter Can Relax in the Water

When assessing for developmental delays, doctors and therapists will check a toddler’s protective responses, such as instinctively outstretching the arms to prevent or brace for a fall. I can only imagine the terror of feeling unsteady and knowing there is absolutely nothing to do about a fall. While my 13-year-old…

The Kindness of a Golf Pro Enabled Our Daughter to Golf

Everywhere we go, my 13-year-old daughter, Cammy, leaves an imprint. People gravitate to her. They want to help her participate like everyone else, in whatever capacity they’re able. I find this often while we vacation. When people greet Cammy or ask her a question, we are quick to educate…

Why I Stopped Caring About My Daughter’s Assessment Scores

While raising my 13-year-old daughter, Cammy, who has special needs, I eventually stopped caring about test scores, regardless of whether they probed educational levels or motor skills. This has helped me to focus on her as a person as well as on her progress. This strategy has been the…

The Last Time I Hugged My Dad

My dad, Joe Corrado, was my real-life Superman when I was young. He was larger than life, the smartest and strongest man I knew. He always shared wrestling stories from his years at Lane Tech College Prep High School in Chicago. He even kept a piece of cartilage in a…

We Have a Teenager in the House

When my oldest child, Cammy, was born on March 10, 2009, I imagined her at certain ages. I pictured her at 4 riding a two-wheeler for the first time. The 10-year-old version would have a sleepover with her friends on her golden birthday. The 13-year-old would start to talk…

Why We Look Forward to International Rett Syndrome Conferences

In April, we will attend our fifth International Rett Syndrome Foundation (IRSF) conference since 2011, when our daughter Cammy was diagnosed with Rett syndrome at 20 months old. We have attended each conference with open hearts and minds. We have specific goals each year, but our overall agenda has…

Updating My Daughter’s IEP as COVID-19 Guidelines Change

As a parent, I consider myself well informed about the school system. I was a high school teacher before I had kids, my oldest sister is an early childhood educator, and my middle sister is a school physical therapist. Both of my sisters have been instrumental in helping me to…