Time Will Tell
It's week two of our series on siblings and autism employment, and it's time to get practical. Last week's column, "Choosing Togetherness," focused on dreams; this week is all about reality. As I wrote in my introductory column, "A Job Worth Doing," this step necessitates, “ … [making] a list of what you think your sibling may need from a job or workplace now. What may be a necessity in the future—such as receiving a paycheck to help defer living expenses—may be optional for your sibling at this stage. Ask: Do they need a quiet space? A flexible schedule? Transportation? Consistent income? A sense of ownership in their work product? Consider what's optional, and what's truly essential.”
Here's what I believe Willie needs most from a job at this stage: new and engaging experiences. At his current day program, he's fortunate to have paid work, but the tasks are menial, such as stuffing envelopes or shredding x-rays. At present, he doesn't need additional income; his expenses are covered by his paychecks, benefits, and our parents. Instead, Willie could use a job that asks more of him. He's highly capable, and many of his abilities aren't utilized in his present work. Furthermore, I have a hunch that a more interesting job might well improve his behavior. Next, Willie's ideal job would incorporate his interests. As noted in my previous column, Willie's diverse areas of expertise include music, movies, dogs, athletic activities, foreign languages, and jokes. Additionally, I consider physical activity an important piece of my brother's employment puzzle. Willie is strong, and expending energy helps moderate his moods. It may help to decrease the likelihood of violent meltdowns as well.
That said, it's also important that Willie continue attending a day program, at least for the foreseeable future. His daily routine lends stability to his life, allows him to interact with peers and teachers, and gives our parents much-needed time to work for themselves. Having spent time pondering each of these factors, I made a call to our Mom to discuss the possibilities. And as it turns out, the timing of our conversation couldn't have been better. Willie has his annual planning meeting coming up in just a few weeks, and Mom had been turning over the employment question in her mind as well.
During our conversation, I learned something new: the structure of Willie's current day program. As Mom explained, the adult training center he attends is divided into three distinct sections. (The program supports individuals with all kinds of physical and developmental disabilities, not just autism.) Participants are grouped in either the general section (which features a loud, open workroom environment that would likely prove unsustainable for Willie), an accessibility section (which is especially for those in wheelchairs with significant mobility challenges), or the “behavioral unit,” for individuals with challenging behaviors. Willie, of course, is a part of the behavioral unit.
“Wow,” I said. “So basically, there's no space for him to get beyond the behavioral unit, right? Even if he doesn't have challenging behaviors at work, there isn't another good option for him there. And Willie's smart, so on some level, he probably knows that.”
“True,” Mom replied. “And from what I hear, he's been doing well at work; the problem behaviors happen in the afternoons, after work. It's like he carries around stress, then explodes.”
Our conversation turned to the possibility of having Willie transfer to a new day program; specifically, one that's tailored to young adults with autism. Since Willie's been attending his current program for several years, such a transfer would be a major change. Then again, it might also offer a much better fit, with room to grow. As it happens, such a program exists, and it's within walking distance of my family's home. This day program was, in fact, our parents' first choice for Willie when they began transition planning, but at the time, there were no slots available. However, Mom heard that they've received additional Medicaid funding since then. I couldn't help but feel hope taking flight, with questions in its wake: Would this day program be a better fit? Would Willie be happier? Will they have a spot? Only time will tell.