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…
The IncRETTibles
— Jacqueline Babiarz

My late daughter, Cammy, was diagnosed with Rett syndrome in 2011. After a few months of being connected with the International Rett Syndrome Foundation, participating in the foundation’s Natural History Study, attending a conference, and meeting other families living with Rett, I became a point of contact for…

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…
My husband, Billy, met his best friend, Aaron, while playing golf at high school. Aaron began dating his wife, Joy, when they were in college. Billy became their third wheel until I came along a few years later. In our 20s, all four of us spent every weekend together while…
I vividly remember reading an article about the late Boston Marathon icon Dick Hoyt. It was 2005, and I was dating my now husband, Billy, the father of our two beautiful girls, Cammy and Ryan. I sent him the article, knowing he’d love it, too, as he was…
Recent Posts
- Supporters urged to ‘go one step further’ this Rett awareness month
- Extra attention from a color avalanche gave my daughter a reason to smile
- What it’s like becoming the point person of a club no mother wants to join
- Case of woman, 63, shows approved Rett therapy may benefit older adults
- ‘G’ is for grandparents: Remembering how my parents embraced my child
- Mouse study offers clues to Rett syndrome mutation differences
- Feeling adrift following the end of Camp Communicate
- Parkinson’s drug shows potential for Rett breathing problems in mice
- A casual chat about Rett syndrome, then a surprise in the mail
- Blocking cellular stress protein may help ease Rett symptoms