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.


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

Puberty & Adulthood Webinar

Puberty: Questions and Practical Answers


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

Looking To Adulthood Webinar

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

To learn in depth about Guardianship, download this PDF.

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