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Thriving with Rett

Despite the challenges of Rett, it is possible to have a rich and rewarding life. We’d like to help you thrive with Rett. Our guides provide you with important information and resources. These easy-to-read guides are written by experts in each field who have experience working with children or adults with Rett syndrome. They are designed for both newly diagnosed families as well as families who have had the diagnosis for years. We hope you find them useful.

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Physical Therapy Guide

Physical Therapy

The importance of physical therapy to individuals with Rett syndrome at all ages cannot be overstated. Learn some examples of activities that can be done with your child at home.

Occupational Therapy Guide

Occupational Therapy

Learn how occupational therapy can have very positive effects on individuals with Rett syndrome, including improved fine motor skills, range of motion, self-feeding, standing tolerance, endurance, and overall strength.

Communication Guide

Communication

Although the majority of individuals with Rett syndrome are non-verbal, they do possess the ability to learn to communicate, and it’s one area where parents can have a huge impact on the life of their child.

Nutrition Guide

Nutrition

Kids and adults with Rett are all different, just like any of us, and they have different likes and dislikes. Follow the nutrition advice here, as best you can, to ensure a healthy diet for your child.

Aquatic Therapy Guide

Aquatic Therapy

The therapeutic properties of the water are so amazing for children and young adults with Rett. Learn exercises that take advantage of the buoyancy of water, allowing for movements that are too hard to accomplish on land.

Music Therapy Guide

Music Therapy

Learn how trained music therapists will use music (singing, playing, listening, and composing), not for music education purposes, but to help develop and/or maintain non-musical skills.

Therapeutic Horseback Riding Guide

Horseback Therapy

The benefits of therapeutic horseback riding are vast, and for individuals with Rett syndrome, those benefits typically include providing opportunities for sensory exploration, muscle strengthening, postural control, and enhancing quality of life.

Chiropractic Guide

Chiropractic

Learn about the basics of chiropractic therapy, including reflex integration, and how your child may benefit from the practice.

Advice and Encouragement from Therapists

Advice from Therapists

Read advice from experienced therapists who work with people with Rett syndrome. This information may be especially helpful for therapists and others who are working with a person with Rett for the first time.

What I Wish I Had Known

What I Wish I Had Known

Nothing replaces the advice, support, and encouragement of other parents and caregivers who know what it's like to get a Rett diagnosis and raise a child with Rett.

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