By Sarah “Mouse” Scharfenaker and Tracy Stackhouse
Estimated Reading Time: 9 min.
One Winter in Denver
So, here I am, four feet of snow on the ground and I’ve run out of organic raisins! What do I do? Put on my Sorel boots and hike to the local “Whole Paycheck” (Whole Foods Market) to stock up on comfort foods while I wait for the power to come back on. Denver snow storms are notorious, but what they don’t show you on the evening news is the beautiful sunny days that follow, 70 degrees with all the snow melting away for lovely spring gardens!
I enter Whole Paycheck and find a tall skinny teenager pacing back and forth, flapping his hands, mumbling to himself. He doesn’t make eye contact as I pass by him and — boy, does he seem anxious! The whole time I’m in the store I keep checking in on him and his behavior hasn’t changed. I wonder, whose child is he? Does he work here? This is not a purposeful activity for him!
I immediately get on my cell phone and call Tracy: “What should I do? How can we help this young man?” Tracy calms me down and reminds me I am on a shopping trip — not a developmental-screening outing.
Tips for Transitioning Into the Workplace
But this is not an uncommon scenario. When you know Fragile X, you know Fragile X! We subsequently found out that this young man is participating in a school vocational training program at the market. Although he had a trainer with him, they were both ill-equipped. He did not engage in any purposeful activities during the one hour he was observed.
His trainer, when asked about the situation, remarked that he always has to cajole this young man into doing any work. The trainer wasn’t pleased with this young man pacing away most of his work time but had no idea how to change the behaviors.
Mouse and Tracy to the rescue!
Does this scenario sound familiar to all of you with young men in vocational settings?
Well, we have some suggestions to make these transitions into the workplace during the high school years more valuable and comfortable for everybody.
1. Personalize the Training
Before embarking on a vocational setting, analyze their sensory needs, language abilities, and interest areas, and convey these clearly to the trainer and workplace.
Often, the job training site is selected by convenience instead of personalized for the individual. Advocate for more individualized training sites. For example, if a person thrives on watching cooking shows on TV, see if a local cable TV channel or cooking school may be able to provide a setting for vocational training.
2. Define the Training Goal
Is it to learn a specific work skill? To learn the social skills associated with being a worker? To become comfortable in a work or school environment?
Each work placement should have a specific small goal and not try to meet all of these early vocational goals at one time.
Use each work experience to hone their interests, talents, and needs so each successive experience gets closer and closer to what will eventually be a true-life placement option.
3. Schedule and Structure the Training
This is the key to success. Transitions and scheduling must be conveyed both audibly and visually. They need to be prepared for what the day holds, what the expectations are, where the “timeout” or break space and bathrooms are, when lunch and snacks will be, etc. This is critical in setting them up for success. A visual schedule may be necessary. This can look like a day planner, like any “worker” might have. It could even be on a phone app!
When we think about the boy at Whole Paycheck, it was obvious that he was very anxious and not engaged in task behavior. He needed to have a program in place to keep him organized, with job tasks clearly matched to his skill level and interest. In addition, his jobs needed to be structured to have a clear marker of To-do and Done with the next To-do readily present so he could maintain his work mode and not get stuck in inaction.
Without that, this leads to anxiety and sets him up for behavioral difficulties. He also needed to have a means of becoming calm and organized when he became overwhelmed. The kinds of jobs he could have been engaged in include:
- Helping stock shelves, which involves heavy work and repetition, both of which are great allies in maintaining organized behavior.
- Greeting shoppers and handing them a cart or basket.
- Spraying the vegetables with a hand-pumped portable sprayer.
- Running errands or restocking.
- Slicing and bagging bread.
Any and all of these jobs could be easily structured to provide a very positive learning experience. But the structure is needed to ensure success. All of the supports that are in place in the school and home environments need to be integrated into the work environment. They need to be structured, practiced, and rehearsed in each new setting, ensuring success in each work experience.
Dr. Elizabeth Berry-Kravis discusses the value of the FORWARD database for understanding problems that face adults living with Fragile X syndrome. We also talk about how families of adults can contribute to FORWARD and our understanding of adults with FXS by doing a research-only remote visits with a FORWARD clinic to increase the data pool for adults with FXS in FORWARD.
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.