Communications Guidelines

Everyone with Rett deserves to be heard.

The Rett Syndrome Communications Guidelines can help.

People often underestimate the communication capabilities of children with Rett syndrome. This means that they are often left out of meaningful school, play, and social interactions. To address this critical issue, we created The Rett Syndrome Communications Guidelines. It gives parents, caregivers, communication professionals, therapists, school educators—in short, anyone who interacts or provides care to your child with Rett syndrome—access to the best information and strategies to facilitate your child’s communication.

Rett Syndrome Communications Guidelines

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TESTIMONIALS

The [Rett Syndrome Communication Guidelines] handbook will be a valuable manual to families of individuals with Rett Syndrome after initial diagnosis and in the years to come. These families can use the handbook when meeting with doctors (neurologists, pediatricians, gastroenterologists, ophthalmologists, etc.) so that parents and caregivers are more knowledgeable in advocating for therapies for their [children]. —Andrea Etkie, Speech-Language Pathologist, M.A., CCC-SLP 

This is an incredible resource for parents, communication partners and ultimately for children/adults with Rett syndrome … I wish I had it two years ago when first starting AAC for our daughter, Ann. It’s comprehensive yet concise. After working with three highly trained SLP’s I over that two-year period I can’t think of any relative material that can be added or that has been left out. — Jack Kuwik, parent and Family Advisory Council member

For many families living with Rett syndrome, finding a way to communicate is one of their most challenging issues. Learning how to use augmentative and alternative communication (AAC) and learning how to facilitate their loved ones to maximize their potential, takes belief in their abilities, a great deal of effort, and lot of support. Seeking knowledge and skills on how to adjust assessments and how to manage communication, parents (and professionals) find themselves in need of expert support, in need of a shared vision of how to approach these aspects. . . .Our beautiful daughters and sons with Rett syndrome may be unable to use their own voices to speak, but surely these guidelines will help them move forward in communicating their needs and opinions and in speaking their minds.—Mariëlle van den Berg, Chair, Rett Syndrome Association Netherlands

I just had an IEP today and want to send it to our speech and language therapist right now.  I want to send to my extended family and all therapists that work with Jaidyn [daughter] for ideas, consistency, and understanding for communication.Daniel Warner, parent and Family Advisory Council member

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HOW THIS HANDBOOK WAS CREATED

This research project, funded by a HeART grant from Rettsyndrome.org, involved reviewing the literature and conducting surveys to identify best practices in the assessment, intervention, and longer-term management of communication in individuals with Rett syndrome around the world. Around 650 people from 43 countries participated in the project, including 490 caregivers and 120 communication professionals who completed the surveys and 36 professionals and parents who formed our expert panel.

In it, you’ll find the recommended guidelines for the assessment, intervention, and longer-term management of communication in individuals with Rett syndrome and to provide relevant background information to caregivers and professionals.

HOW IT’S ORGANIZED

We’ve made this 116-page handbook easy to navigate so you can use it as a reference guide and find answers quickly. It’s divided into these eight sections:

Guiding Principles
Professional Practice
Features of Rett Syndrome Coexisting Conditions
Strategies To Optimize Engagement
General Communication Assessment
AAC Assessment
Assessment of AAC/Device
Intervention

Our goal for this handbook is to empower Rett families with education and resources so that their children receive the best care, the best therapies, and the best chance to reach their full communication potential.

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The cost of this handbook has been partially underwritten by Rettsyndrome.org.