How to Write an ‘About Me’ Book for Your Child With Rett Syndrome

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 classmates and parents with a welcome letter that offers age-appropriate information about the disease and how to interact with a nonverbal, nonambulatory child. Our daughter Cammy, who has Rett syndrome, has an “About Me” book that we provide to school staff members, therapists,  and other specialists who work with her.

I wrote Cammy’s original six-page “About Me” book when she aged out of Early Intervention and was entering an early childhood center at age 3. The book’s introduction paragraph is about Cammy as a person, not her disorder. It includes all of the things she loves to do, things that make her smile, her hobbies, and her family, just like any introduction to other students in a classroom would.

I added photos of her swimming with her sister, Ryan, and posing with professional hockey player Duncan Keith, formerly of the Chicago Blackhawks. These are all quick topics to engage Cammy in a conversation upon meeting her.

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Then, I sat with IRSF’s Rett syndrome manual and began typing symptom by symptom all that applied to Cammy. I explained in great detail how the disease affects her, including her access to education, and the ways we have found to help her. The book included symptoms that Cammy didn’t have at the moment, but that could present at any time, such as seizures and respiratory issues. These were listed as potential risks.

Cammy’s book also illustrates why she needs a one-on-one aide. She lacks protective responses, has sensory integration dysfunction and temperature regulation issues, and uses an Eyegaze communication device. So, proper training is required for anyone who works with her.

Apraxia is one of the most devastating effects of Rett syndrome. I included communication assessments she had via Easterseals and a renowned communication expert. We already had a communication device, but professional assessments are required to obtain communication devices. The communication part was most crucial because it gave her school staff details about how to interact with her, and explanations about what some of her body language meant.

Examples include:

“When she looks at you, that’s ‘Yes.’ When she looks away, that’s ‘No.’”

“When a person enters and says ‘Hi,’ watch her right hand, she will slightly raise her hand and fingers to resemble a wave. That is intentional, it is her wave hello.”

“She will pretend to sleep if she is bored, uninterested, or uncomfortable.”

I also included a list of family, medical, and therapeutic team contacts, and links for videos we’ve made about Cammy’s journey with Rett.

Every August, I sit down to revise the book for the upcoming school year. Things have changed over the years. She has gotten a feeding tube and has had respiratory issues, for example. But it is easy to edit now.

The “About Me” book has received the highest praise from staff members who have worked with Cammy. Although she is 4 feet tall and weighs 45 pounds, my 12-year-old can be intimidating. Having a handbook, as well as just getting to know her, makes her pretty easy to work with.

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Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.