Crisis prevention training reminded me of my late daughter

Last week, I attended a Crisis Prevention Institute (CPI) training session at the school where I work, and I couldn’t stop thinking about my late daughter, Cammy. Listening to examples of students’ trauma and precipitating factors that staff and fellow classmates might not be aware of reminded me of my own child’s situation. Educating our friends, family, and community about Rett syndrome and how it impacted Cammy opened their eyes.

When Cammy was diagnosed with Rett syndrome in 2011, I slowly started sharing our journey on social media to increase awareness. After a while, it became about more than raising awareness. It was a way to increase emotional intelligence, provide sensitivity training, and promote empathy — not just for Cammy, but for our entire family.

In my annual CPI training, we are taught to analyze why and how a person may exhibit distressing behavior. We then identify the level of risk, and finally, we use strategies to mitigate risk. There are tons of reasons why a student might act out or withdraw: Their parents might be fighting, the child might be food insecure, a sibling might have a health condition, staying at Mom’s place versus Dad’s could disrupt a routine, the child could be experiencing emotional or physical abuse, and more. As faculty, we need to understand that we likely don’t have the full story behind a distressing behavior.

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Cammy was nonambulatory, so she was not at risk of eloping from school or even from us. She was nonverbal and didn’t have functional use of her hands, so there was no risk of her yelling, swearing, or laying hands on anyone. Cammy was not a danger to herself or others. Her response to difficult situations was to shut down. She would fall asleep (or pretend to sleep) to avoid work or discomfort.

Many people would think she was just tired. That very well could have been true, since sleep disturbances are a characteristic of Rett syndrome. But this was also how she responded to distress.

Cammy couldn’t tell anyone how she felt about having Rett syndrome. She couldn’t express what it was like to be around neurotypical people while she was neurodiverse. Cammy couldn’t describe the intense therapies she endured daily for 15 years. She relied on me and our family to inform staff about the factors that might contribute to her emotional and physical state.

Some days, Cammy would be exhausted after being up since 2 a.m. or doing two private therapy sessions the evening before. Other times, she was flat out having a bad “Rett day” where she was miserable and we couldn’t soothe her.

Being open about Cammy’s journey with Rett syndrome helped school staff, friends, and family members be more empathetic. Letting her teachers know how her night or day had gone helped them understand her mood and behavior. Now that I’m back at school, I hope to learn more about my students so I can better understand their behaviors.

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.