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 hur...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Our Patients’ Stories rett syndrome Source Type: news

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Source: Physiology and Behavior - Category: Physiology Source Type: research
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Source: Journal of Physiotherapy - Category: Physiotherapy Source Type: research
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Abstract The present study explores the longitudinal development between Grade 3 word level reading skills and higher level semantic skills to Grade 10 reading comprehension for 3,157 students. In particular, this work focused on how the developmental relations varied for subsamples of students who are English learners (EL; N = 308), students identified as specific learning disability (SLD; N = 133), and general education (Gen Ed; N = 2,716) students who have no formal classification or diagnoses. Multiple group structural equation modeling showed that the relation between Grade 3 vocabulary and Grade 10 reading c...
Source: Journal of Learning Disabilities - Category: Disability Authors: Tags: J Learn Disabil Source Type: research
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Source: SafetyLit - Category: International Medicine & Public Health Tags: Economics of Injury and Safety, PTSD, Injury Outcomes Source Type: news
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Source: SafetyLit - Category: International Medicine & Public Health Tags: Age: Adolescents Source Type: news
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Source: SafetyLit - Category: International Medicine & Public Health Tags: Age: Elder Adults Source Type: news
Go Baby Go is a program at the University of Delaware that adapts ride-on toy cars for the recreation of children with disabilities. Colombia's health-care system faces many challenges in delivering early mobility devices to these children; thus, here (in ...
Source: SafetyLit - Category: International Medicine & Public Health Tags: Age: Infants and Children Source Type: news
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Source: SafetyLit - Category: International Medicine & Public Health Tags: Age: Infants and Children Source Type: news
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Source: SafetyLit - Category: International Medicine & Public Health Tags: Alcohol and Other Drugs Source Type: news
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