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 and figuratively, turning anything we could into a fundraising opportunity.

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, Cammy, has many of these regulation issues. Some have been obstacles…

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 physical intervention, verbal de-escalation, behavior management strategies, trauma-informed care, and restorative…

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 than our home school provides. Cammy’s condition affects her entire body.

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 have taught science or math, but I think his niche would’ve…

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 prefer to be in school because that is where they socialize…

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 knew that. My family and friends knew that. So what were…

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 a person’s ability to continue making decisions.” Most parents experience this…

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 my dentist asked me questions while my mouth was pried open.

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 children personal care like showering at a young age, and then…

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 what your partner will be like as a mother or…

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 not sure if the doctor didn’t know how to convey the…