Adulthood & Fragile X Syndrome | NFXF (original) (raw)

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Adulthood & Fragile X Syndrome

Adulthood & Fragile X SyndromeDany Petraska2024-08-13T12:46:38-04:00

Adulthood and Fragile X Syndrome

Challenges faced by adults with Fragile X syndrome — and their caregivers — may include cognitive, learning, communication, and physical and medical issues. Difficulties in adulthood often begin with the transition from adolescence into adulthood and continue throughout their lives. As they age, common issues families face include housing, employment, and transportation. However, with support and intervention strategies, adults with Fragile X syndrome can lead fulfilling and meaningful lives.

Adult Life ebook cover

Adults with Fragile X Syndrome: Making a Better Tomorrow

We have built the ultimate guide on transitioning into and continuing to care for adults with Fragile X syndrome. Our e-book includes chapters on the transition to adult services, transportation, housing, employment, volunteering, day programs, college and post-secondary education, and daily living.

From Our Info Series

All of our Info Series are available to read online and as a PDF download (in both English and Spanish) designed to be easily printable on your home or office printer. You may also want to browse our other available Info Series flyers on various topics for both FXS and premutation carriers.

Info Series on adult living including volunteering, employment, and day programs.

Daily activities in place of school may include a paying job, volunteering, day programs, or post-secondary education.

Link to Info Series on adult living and transportation.

Various transportation options and some tips on easing into new experiences.

Link to Info Series on adult living and housing.

Moving into adult housing is life-changing for everyone involved, and preparation is key!

Link to Info Series on adult living and housing.

Moving into adult housing is life-changing for everyone involved, and preparation is key!

Treatment Recommendations

Links to Transition to Adult Services for Individuals with Fragile X Syndrome.

This paper is focused on the transition from adolescence to adulthood. Because the research on this topic is limited, much of the information is anecdotal, meaning it is taken from clinical experience or provided by parents. Formal studies are referenced.

Webinars

From Our Blog

Hilary Rosselot2024-10-10T13:32:33-04:00

Happy National Disability Employment Awareness Month!

By Hilary Rosselot|2024-10-10T13:32:33-04:00Oct 9, 2024|

October is a time that draws the attention of the nation on critical issues related to disability employment, bringing awareness to a subject that we know has importance all year round. We know many individuals living with Fragile X want to work and though some do, not everyone who wants a job has found one that best fits their strengths and skillsets. We are determined to help you educate yourself on the supports that exist and how to best advocate for you or your loved ones needs in the workplace.

Missy Zolecki2024-01-25T15:03:03-05:00

Introductory Discussion on Estate Planning — Webinar

By Missy Zolecki|2024-01-25T15:03:03-05:00Jan 25, 2024|

We hosted an introductory discussion on bequests, wills, trusts, life insurance, and IRA transfers. The panel provided insight on navigating the complexities of wealth transfer, ensuring your legacy is preserved and your loved ones are well cared for.

Missy Zolecki2023-11-02T12:20:32-04:00

Employment Strategies and Successes — Webinar

By Missy Zolecki|2023-11-02T12:20:32-04:00Nov 2, 2023|

In celebration of National Disability Employment Awareness Month, we were joined by a dynamic panel that shared strategies and their individual employment successes! Meaningful employment is important to parents and self-advocates!

Dan Whiting2023-03-11T21:03:15-05:00

The ABLE Employment Flexibility Act

By Dan Whiting|2023-03-11T21:03:15-05:00Jan 13, 2022|

The ABLE Employment Flexibility Act (H.R. 4672) permits employers to contribute to an employee’s ABLE account instead of a 401(k) – including an employer’s match. By saving it in the ABLE account it will not adversely affect most means-tested federal benefits.

NFXF2023-03-12T08:58:33-04:00

8 Tips on Transitioning Your Child to Adult Services

By NFXF|2023-03-12T08:58:33-04:00Dec 5, 2018|

Parents and other caregivers must consider many factors as young people with Fragile X syndrome approach the transition from high school to adulthood. Here we present eight tips based on research from Morgridge College of Education at the University of Denver.

Jayne Dixon Weber2023-03-12T08:46:49-04:00

Getting and Keeping a Job

By Jayne Dixon Weber|2023-03-12T08:46:49-04:00Feb 3, 2016|

It was late summer and Ian was 18 years old and he was getting ready to start the transition program at his high school, a program for students 18-21 years old after they graduate from high school. I had to figure out how to make this work.

Sample Interview Questions for a Care Provider (PDF)
Employment questionnaire laws and regulations differ from state to state. We cannot guarantee that all of the sample questions can be asked in your state. Check with your state’s Department of Fair Employment or consult with an attorney familiar with employment law in your area.

Living Settings Checklist (PDF)
A checklist of some of the most important consideration to evaluate your child’s individual needs when considering a living setting.

Study: Transitioning to Adulthood with Fragile X Syndrome
University of Kansas’ LifeSpan Institute is conducting research to learn about the transition to adulthood for individuals with Fragile X syndrome, as well as the experiences of parents of these young adults.