Activities of Daily Living
Whether the adult is working at a paying job (competitive employment), volunteering, attending a day program, or is able to attend post-secondary education, it is important to keep them engaged in the community every day. It is essential that they leave the house every day as many will attest that agoraphobia (fear of leaving the house) is common as people with FXS age. This has been anecdotally noted more often with males. As the adult leaves the routine and scheduling of school, it is common for them to avoid participation in community-based events.
To find the options in the area where the family lives, they can reach out to the local disability organization, the local Arc, or other parents who live in the area. Parents are encouraged to visit any programs they are considering, finding out what happens during the day, and they should try to visit at different times of the day, if possible, to see how the activities change throughout the day. They should ask about transportation to the program, the hours each day of the program, whether the schedule changes on a daily basis — do they do different activities each day, and how parents/providers are notified of any changes to regular daily programming.
Also note how many other people are in the program and the number of providers they have to assist the group. Do they utilize visual schedules? Are they open to learning new skills? Basically, is it an environment where you think the adult will thrive? That will be important to keep in mind if you decide to use the program.
Don’t dismiss volunteer jobs. They could be the best thing that the person with FXS ever does. Working at the Humane Society? In a senior center? These can be very rewarding jobs. Volunteers are an important part of many organizations, and in many cases, they are invaluable!
Employment/Vocational Rehabilitation Services (Voc. Rehab)
Seek employment for the person with FXS if he or she is able to work part or full time. It is not unusual for parents to find the job for their adult child, but there are also resources to help find the job — and a job coach, if needed.
Every state has a federally funded Bureau of Rehabilitation Services that helps people who have physical or mental disabilities get or keep a job. To find out if the adult with FXS qualifies for services, contact the local Vocational Rehabilitation Services for more information. The person with FXS will meet with a counselor to determine if he or she is eligible to receive services and, if they are, they will help find employment that works for the young adult.
For many, when thinking of “work” the first thing that comes to mind is the ability to earn money. But if one thinks about the post high school needs of adults affected by FXS, it’s so much more than that!
During the high school years, the educational environment provides opportunities for learning, social interaction, and the ability to make friends along with opportunities to gain some level of independence. But once out of the educational setting, what provides these opportunities for enjoyment, fulfillment, feedback, social development, life-skill development, and independence? Many families have found that “work” is just that setting.
A good resource for transitioning from “school” to “work” is often available right in the high school setting or through other resources provided by your state with formal programing to identify a good employment “fit” (an area of interest and ability of your child which satisfies his or her needs for success in the workplace), and placement and “coaching” in the workplace to help the new “employee” transition successfully into the work environment.
While transition resources are likely available through a formal transition program or right out of high school, sustaining successful employment is something that usually requires long-term monitoring and management as things in the workplace change over time, as will your transitioning young adult. As one approaches employment, it’s good to think through some of the most basic questions surrounding this transition.
Working gives your young adult some things that are important for all of us … Someplace to go, something to do … to be among other people. Work can also provide feelings of pride and satisfaction when someone is told “you did a good job! Thank you!” And the receiving of a paycheck says “I’m valued and earned something by my work,” which can be the basis of a sense of pride for the person as well as of the tangible ability to buy something with their own money. Over time, the workplace can be a place that builds strong self-esteem for the young adult. But for many, the most important aspect of work is the ability to socialize with coworkers in the workplace and develop trusted friendships.
Without work, many families have observed that post high school life leaves their young adult in a more solitary setting like in a bedroom most of the day, watching television or playing games, and perhaps eating more and moving around less, contributing to a poor health profile, loneliness and low self-esteem.
That is why it is important that your young adult continue to do something when he or she leaves high school. A job, a day program or volunteering — doing “something” during the day contributes to the well-being of the person with FXS.
What does a good work environment “look like”? This is a question that does not have any single answer, but some families report characteristics which have resulted in a successful work experience for their family member. Success in the work environment often depends on the employer’s interest and willingness to learn about unique behavioral characteristics of the adult with FXS.
Each adult with FXS is an individual but there are some challenges in the environment and interactions with the employer and other employees that can best be approached with preparation and information about your son or daughter.
The following list is not all-inclusive, but for the purpose of this document may be considered when looking for employment. The nature of the work is something that appeals to the young adult and is something that they can be “good at.” This may include:
- Working with young children in a day care setting.
- Food preparation in a kitchen or restaurant.
- Working with animals/pets at a pet shelter or pet store.
- Bagging groceries or stocking shelves in a store can be doable and enjoyable job for some and provides for social interaction with customers.
- Setting the tables, chairs, and condiments at a restaurant.
- Cleaning at local business offices (after hours for some is preferred).
- Clearing tables and placing items in dishwashing area.
- Working in a warehouse or large department store doing stocking and sorting often appeals to their need to clean up or organize which is a relative strength for people who have FXS. In addition, it provides a natural occurrence of heavy lifting and active work.
If the adult has good attention to detail in repetitive tasks, perhaps a quality inspector in a printing company would be a fit, or sorting clothes at a Goodwill or clothing recycling store.
Many males with FXS do well in work environments that allow for movement and social contacts. For example, several have been successful with a job serving juice or snacks to elderly people in skilled nursing facilities because they are able to greet the residents and engage in social exchanges which are not especially complicated and short. Others tend to enjoy working with food and providing prep to chefs. Routine and repetition usually bring success such as tasks that involve sorting and stocking store items. Paper shredding and recycling are other good examples of job tasks that have proven enjoyable and meaningful.
Some females and most males with FXS do not enjoy the unpredictability of younger children. They often become agitated when a child cries or becomes verbally loud. This can also be true with animal care, although some females have enjoyed volunteer work at a humane society or even working in a pet store. Many females have reported good work experiences at a day care or preschool, although careful consideration to the intensity of care required by infants may need to be considered.
The environment plays a big part in job success. The social component is very import. Adults with FXS tend to enjoy relationships with their supervisors and coaches more than with peers but they like “being one of the group” at work. On the other hand, a social environment that is too large or chaotic and unpredictable tends to be stressful and not a good working environment.
Being put on the spot with employers can became debilitating. Adults with FXS want to please and may feel as though they are letting their employer down if they are unable to perform certain tasks or verbally answer questions. If the job requires a fast pace or processing, it can create stress which may result in negative or avoidant behaviors. Giving adults with FXS responsibility to count change or work with money or the cash register (even for women with FXS) is also challenging and should be avoided.
What else needs to be in place?
An information and performance feedback loop is very important. Because the workplace is outside of your direct observation, and to ensure that workplace behavior and performance stays “on track,” it is important to have a feedback loop from someone in the workplace. This could be through a job coach who gets feedback from the employee and the employer, or sometimes, the employer is comfortable and agreeable to providing feedback directly to the family/caregiver. With a good feedback loop one can identify and address any changes in the workplace or behavior to ensure ongoing success on the job. Sometimes simple priming of a certain job-related task as part of the training can make the difference between success and failure.
A system of prompting, early in the job to help the individual with FXS initiate the next job task and sequencing subsequent tasks to complete a job, is helpful. This reduces the problem of getting stalled between job tasks due to difficulty with initiating the next step independently.
Being able to get to work on time and home after work are obvious requirements for success in the workplace. Coming up with mobility strategies also increases the overall independence of any individual. As mentioned earlier in this paper, some families have found success using public transportation in their communities. Others have been able to support their child obtaining a driver’s license. Your community may also have services available for transportation if public transportation or self-driving are not good options.
Putting one’s “best foot forward” is equally as important after your child graduates. When your child was in the educational environment, how did you make sure they could accomplish tasks? Some of these same strategies for school success may be important for workplace. Are there environmental factors in the workplace that can be modified? Is the noise level too high? Can the employer utilize more visual signage or even post a visual chart of the task sequence? Were there any medications your child took in the school setting to help with anxiety or staying “on task” that would be appropriate to continue in the workplace?
As important as work skills are for success, so are self-advocacy skills. A team member who has a trusting relationship with the person with FXS may be able to identify and teach self-advocacy skills. This assures safety in the social environment, especially if the adult is socially vulnerable. Identifying proper resources to be used proactively such as check-ins and communication about concerns are essential to establishing safe community integration.
Many families have reported that success in the workplace is an important part of their family member achieving “life success” and a feeling of fulfillment, contribution and happiness. And, like many good things in life, it can require a lot of effort on the part of you, your child and the employer. But the rewards can be great for all. Remembering that all the adults in our Fragile X community can thrive when their opinions, preferences, and needs are well supported, and these should be considered when planning or implementing program plans with and/or for them.
For more information: National Parent Center on Transition and Employment