By Jasmine Shen

For young adults with Fragile X syndrome (FXS), having daily, scheduled activities is critical to creating structure and staying engaged and active. Once they’re out of high school, a huge part of their usual routines are gone and need to be replaced with new structure and activities.

Routine activities such as working at a paying job, volunteering, or participating in a day program are all good options. Here are some tips to figure out what type of activities are available and should be considered.

Access Your High School’s Transition Program

High schools often have transition programs for ages 18-21, with some offering programs beyond age 21. These programs vary by school (and state) but are often geared toward providing individuals with the opportunity to try different jobs, expand their life skills, and work on academic and functional skills.

The main objective is to provide individuals with FXS the ability to create an established routine as they transition out of school services. To find additional information on high school transition programs, contacting your local Arc, disability organization, or parent group (including the NFXF Community Support Network) is a good place to start.

Set Expectations

While these schedules can be fluid and changed over time, providing structure to your young adult’s life sets expectations for each day. As you build the schedule, you can begin to incorporate chores and other activities into the schedule.

While transition programs provide a great opportunity for individuals to discover and understand which activities they’re best suited for, it’s your responsibility as a parent or primary caregiver to set your young adult’s daily schedule.

Adult Life ebook cover

Adults with Fragile X Syndrome:
Making a Better Tomorrow

We are building the ultimate guide on transitioning into and continuing to care for adults with Fragile X syndrome, one chapter at a time — and you only need to get it once.

It’s super easy (and free). Download your copy now and we’ll send you updated versions as each chapter becomes available.

GET YOUR COPY OF ADULTS WITH FXS

Seek Out Additional Opportunities

Employment

Finding employment can be challenging, but take advantage of local resources, such as your state’s vocational rehabilitation agency, your local Arc, or parent group.

Also, don’t hesitate to talk to the businesses where your young adult has an interest.

Also see: Employment Opportunities for Your Young Adult

Volunteering

Another option or addition to the daily schedule is volunteering, which can provide valuable work experience and new contacts with local employers. Ideas include humane societies, senior centers, and libraries, all of which present different challenges and schedules. It’s important to note that while the individual is not being compensated, there are certain expectations companies require in volunteers. Volunteering is still a commitment and should be seen as such.

Day Programs

Day programs also serve as a viable opportunity for young adults to add routine to their daily schedule. Reaching out to the resources already discussed above may provide information on day programs in your area.

You’ll want to take the following into consideration when visiting and considering different programs:

  • What are their daily program hours?
  • What’s a typical daily schedule?
  • Are each day’s activities the same or different?
    Tip: Try to visit at different times of the day, if possible, to see how the activities change throughout the day.
  • Do they interact with the local community?
  • How are parents/providers notified of any changes to regular daily programming?
  • What transportation options are available?

Post-Secondary Education

Our ebook Adults with Fragile X Syndrome: Making a Better Tomorrow is an ongoing project covering all aspects of adult life and covers employment, volunteering, and day programs as described above. It’s also an ongoing resource, meaning, if you get your copy now you’ll receive updated copies as new chapters become available, including our upcoming chapter: College and Postsecondary Education.

When deciding which activities work best for your young adult, it’s best to consider all opportunities available. Reaching out to local resources and considering what is best for your young adult makes a world of difference.

author
Jasmine Shen

Jasmine Shen
Jasmine worked as an intern for the National Fragile X Foundation during the summer of 2021. A student at Johns Hopkins, she is majoring in economics and public health. She loves hiking, baking, and spending time with family.

External Resources

A few links to help you learn more about transition planning plus educational and vocational rehabilitation guides, services, and agencies.

Vocational Rehabilitation Agencies by State
Every state has a vocational rehabilitation agency and will help your young adult explore different employment options based on their specific needs through an individualized plan for employment (or IPE). In most states, the services are free and in others may be based on financial need. (Source: JAN/Job Accommodation Network)

Increasing Postsecondary Opportunities and Success for Students and Youth with Disabilities
A Q&A on state and local educational and vocational rehabilitation agencies, including enrolling in postsecondary education programs while still in high school, comprehensive transition and other postsecondary programs after high school, transition services under IDEA and vocational rehabilitation programs, and financial aid offered at different institutions. (Source: Dept. of Education)

A Transition Guide to Post-Secondary Education and Employment for Students and Youth with Disabilities
A complete guide from the Department of Education covering transition planning, transition services and requirements, options after leaving high school, and supporting your young adult’s decisions. (Source: Dept. of Education)

Easterseals Disability Services for Young Adults
Services and local Easterseals affiliates for young adults transitioning from childhood to adult life. (Source: Easterseals)

Think College Family Resources
Think College put a page together to respond to the most frequently asked questions that families have when first exploring and learning about college options for young adults with intellectual disability, including how to prepare and apply, finding the right college, learning about the differences between high school and college, and affordability information. (Source: Think College)

Parent Training and Information Centers (PTIs) and Community Parent Resource Centers (CPRCs) in the U.S. and Territories
Find your state’s Parent Training and Information Center, which includes programs for all family members. (Source: Center for Parent Information and Resources)

more from the national fragile x foundation

Transition to Adult Services for Individuals with Fragile X Syndrome
Because IDEA mandates support through the age of 21, individuals with FXS often qualify for transition programs and receive support beyond graduation from high school. This type of programming is extremely important to developing as much independence as possible through the age of 21.