Adolescence & Beyond

mom and daughterAdolescence and puberty are not affected by Rett syndrome. Signs of puberty can appear prematurely, as early as 7 or 8, but true puberty generally occurs around the same time as her typical peers. Visit MedlinePlus for general information about puberty. Below are some resources for individuals with Rett syndrome.

Transition of Care Toolkit

IRSF’s Rett Syndrome Transition of Care Toolkit is designed to empower parents and guide healthcare providers through the conversations necessary to transition a loved one to adult medical care. Every journey to adulthood is different, but with this Toolkit, families can face the challenges of aging with Rett head-on thanks to the insights and learnings of Rett caregivers who have been there before.



The TOC Toolkit was developed by IRSF in collaboration with the Child Neurology Foundation as part of the ACP HVC pediatric to adult care transition project.



Jane Lane, RN, BSN, University of Alabama Birmingham, Rett CenterJane Lane, RN, BSN, University of Alabama Birmingham, Rett Center

Puberty & Adulthood Webinar

Puberty: Questions and Practical Answers


Judy O Barrish, BSN, RN Patient Manager/Project Coordinator, The Blue Bird Circle Rett CenterJudy O Barrish, BSN, RN Patient Manager/Project Coordinator, The Blue Bird Circle Rett Center

Looking To Adulthood PDF

Day Habilitation Programs and Alternatives

In most cases, public schools continue until at least 21. The options available for adult programs will depend on where you live. Contact your state Development Disabilities Agency for identifying appropriate programs. Also look into potential jobs or volunteer opportunities in the community.

Planning for the Future

Individuals with Rett syndrome can and do live well into adulthood. It is important to plan for the future and get the support and equipment you need to help them live to their greatest potential. In the U.S. you can contact The Arc for a local referral to professionals who can help with adults. You can also reach out in one of our local support networks for advice and wisdom.

To protect your adult children, learn more. Watch our RettEd Webinar by Mary Anne Ehlert, CFP. Protected Tomorrows, Inc

RettEd Adulthood Webinar Series

We have created a webinar series to help you navigate your loved one’s transition into adulthood. Please visit the links below to learn more from experts and real Rett families.

Adulthood: Living and lifestyle

transitioning into adulthood: medical Transition of care

transitioning into adulthood: lifecare planning

transitioning into adulthood: Quality of Life Options