The IncRETTibles
— Jacqueline Babiarz

When our oldest daughter, Cammy, was diagnosed with Rett syndrome in 2011, we knew that the only thing we could control was raising money for research, care, and a cure. So we hit the ground running, literally…

Many people with Rett syndrome have issues with regulating their temperature, circulation, mood, breathing, and heart rate, which can also cause problems of anxiety, sleep, and fine and gross motor skills. My teenage daughter with Rett syndrome,…

Before this school year began, I attended a nonviolent crisis intervention training session, held by the Crisis Prevention Institute, for the school district where I’m teaching adapted physical education. This annual training for educators and staff covers…

I have two middle schoolers. My oldest daughter, Cammy, is in eighth grade. My younger daughter, Ryan, is in sixth grade. They’re in separate schools because Cammy, who has Rett syndrome, requires more services for her education…

While growing up, I remember my dad mentioning a few times that he always wanted to be a teacher. He was a wonderful electrical engineer, and he also would have made an excellent teacher and coach. He could…

As a teacher, I’ve learned that not every child loves summer and holiday breaks. Not every child goes on vacation, enjoys fun, experiential trips to nearby cities, museums, and ball parks, or hangs out with friends. Some children…

My 13-year-old daughter, Cammy, was diagnosed with Rett syndrome on Jan. 7, 2011. It was the worst day of my life. There was nothing anyone could say or do to take away my pain and sorrow. I…

One of the most draining aspects of our lives as parents and caregivers of someone with Rett syndrome is decision fatigue. The American Medical Association describes decision fatigue as “a state of mental overload that can impede…

I have terrible memories of going to the dentist as a child: tightly closed eyes, the sound of drilling and suctioning, the removal of whatever was between my teeth, large needles going into my jaw. I hated it when…

Having a child with special needs means having additional worries, fears, and caregiving duties, especially during puberty. That’s a rough time for everyone, but when the child is nonverbal and nonambulatory, it’s much more complex. Typically, parents teach their…

When you’re dating someone, you can guess how they will be as a husband or wife. I knew my husband, Billy, was going to love me for better or worse, in sickness and in health. You don’t, however, know…

On Nov. 23, 2010, when my firstborn, Cammy, was 20 months old, a physiatrist clinically diagnosed her with Rett syndrome. I was relieved that someone had finally identified her condition, but equally devastated by what it meant. I’m…