So, here we are, four feet of snow on the ground and we’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 we 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 am 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 the cell phone and contact 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 and not a developmental-screening outing.

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.

Personalize the Training

Before embarking on a vocational setting, analyze the client’s

  • sensory needs,
  • language abilities,
  • 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.

What is the Goal of the Training?

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 the person’s interests, talents and needs so each successive experience gets closer and closer to what will eventually be a true-life placement option.

Scheduling and Structure is the Key to Success

Transitions and scheduling must be conveyed both auditorily and visually. People need to be prepared for what the day holds, what the expectations are, where the ‘time out’ or break space and bathrooms are, when lunch and snacks will be, etc. This is critical in setting the person 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.

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 people and giving them a cart or basket; spraying the vegetables with a hand-pumped and carried sprayer; being an errand runner or re-stocker; or doing the bread slicing and bagging.

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.

Sarah “Mouse” Scharfenaker, MA, CCC-SLPSarah “Mouse” Scharfenaker, MA, CCC-SLP fondly known as “Mouse”, is vice-president, CFO and co-founder of Developmental FX. She has worked in the fields of Fragile X syndrome and neurodevelopmental disorders for more than 25 years. She received both her undergraduate and graduate degrees from the University of Montana, Missoula.
Tracy Stackhouse, MA, OTRTracy Stackhouse, MA, OTR a Colorado native, is president and co-founder of Developmental FX. She is a leading pediatric occupational therapist (OT) involved in clinical treatment, research, mentoring, and training regarding OT intervention for persons with neurodevelopmental disorders, especially Fragile X syndrome and autism.