Seven lessons I ’ve learned from Rett syndrome

As a mother of a child with Rett syndrome, a disability that affects the brain’s ability to plan or coordinate motor skills, the phrase “take for granted” takes on a whole new meaning. I cannot take for granted that Ava can recite her A, B, C’s or feed herself a snack or go to the bathroom on her own. Quite the opposite. Every day, I strive to properly appreciate the effort it takes for Ava to perform the most mundane tasks. I am the one being “schooled” on Rett syndrome. Here are seven of the things Rett syndrome has taught me: 1. Technology is seriously cool.  Ava doesn’t speak, but she can communicate. She uses a speech-generating device with eye-gaze technology that detects the box or symbol she is looking at on the screen and speaks the words it represents. The grid of symbols represent everyday activities, needs, expressions and feelings. It has been invaluable to be able to hear Ava’s “voice.” She navigates with so much ease it’s scary. 2. How to adapt. Rett girls engage in a stereotypical hand movement, like a hand-washing or wringing that renders their hands useless. You can break the pattern temporarily — hold one of her hands and she will focus on using the free hand to lift a fork to her mouth. But inevitably, the fork will be dropped as she tries to find that other hand. If she had hand use she could learn sign language. She could dress, feed, bathe and toilet herself. Yeah. This one hurts. Ava and big sister, Zoe 3. Patience. Rett syndro...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Our Patients’ Stories rett syndrome Source Type: news