Rettsyndrome.org has just released these resources to support families who are confined to their homes
We know that the shelter-in-place guidelines are especially challenging for our families caring for a loved one with Rett syndrome. Many therapies have been stopped or are being done in an abbreviated version so that gained ground is not lost. Most learning has shifted to parents and caregivers. And we have all experienced the loss of well-established daily routines and the added burden of trying to maintain a safe, healthy environment that protects our vulnerable children.
Here are some resources we’re releasing to help you through this challenging time:
Physical Therapy and Communication Trainings
We have mobilized our global network of Rett experts, researchers, partners, and parents to develop trainings for you to use at home. A list of upcoming home-bound trainings as well as a library of past recordings can be found here.
A couple of live trainings we’d like to highlight are just around the corner:
- RettEd Webinar: What’s Going Right in Their Brain? Maximizing Neuroplasticity in Therapies on Thursday, April 23, 1pm. Please register to participate.
- Facebook Live: Communication Intervention, Part 1, feat. Gill Townend & Theresa Bartolotta on Monday, April 27, 2-3pm. Learn more.
- Facebook Live: Integrating Movement with a Lift/Live Q&A, feat. Meir Lotan on Thursday, April 30, 11am. Learn more.
- Facebook Live: Communication Intervention, Part 2, feat. Gill Townend & Theresa Bartolotta on Monday, May 4, 2-3pm. Learn more.
Here’s what some parents had to say about our trainings:
Very interesting ideas that I will take along and implement.
It’s such an awesome resource to have and makes me feel a bit of normalcy during this. [One] big take away I had from [Facebook] live with Dr. Lotan was to have Viv walk to various activities and have her help as much as she can. I’ve been trying to remember to do that instead of just carrying her everywhere… even though it’s hard to remember!
Thank you for this! It is so motivating and valuable!
It is a great session for me. It’s an emergency for me to learn and teach mydaughter how to communicate! She is crying, and crying daily and constantly and I don’t have any picture book or device.
Great seminar!! Loved the information and ability to connect with others on FB live! Can’t wait for the next!
Thanks for a great session. Lots of ideas here for me in UK with my son.
At-Home Resources and Activities
An international group of therapists, advocates, and parents who are passionate about supporting children with Rett syndrome put this resource together. It contains ideas that may be helpful for you and your child while you are spending more time at home. The ideas are based on the concept of participation, that is, meaningful involvement in activities of daily life, with focus on the home setting. There are sections on household chores, personal care, learning and education, exercise and activity, and indoor play and games as well as online resources, including where to purchase switches and switch-operated toys.
Rett Syndrome Communications Guidelines
People often underestimate the communication capabilities of children with Rett syndrome. This means that our children are often left out of meaningful school, play, and social interactions. To address this critical issue, we, along with around 650 Rett syndrome experts from 43 countries, 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, resources, and strategies to facilitate your child’s communication.
Our COVID-19 Response
Please read our message from Dr. Tim Benke, Rettsyndrome.org Medical Advisor, and view our list of recommended resources. As this situation is dynamic, we will be updating this page regularly.
All these resources and more can be found here.
This community is here for you and ready to empower you to meet the needs of our children with Rett syndrome. Please reach out to us if you have questions or contact your State Family Empowerment Representative. Just visit our website, click on your state to view your representative, and then connect with them via email or phone.