Different path but same destination
Over the Thanksgiving holiday my family traveled to visit relatives, and we stayed in a hotel room. My children love hotel rooms – they love exploring the room, hiding in the closets and jumping on the beds. But every time I enter a hotel room, I recall a poignant conversation from many years ago with a friend of mine about her son who has autism (as does our oldest son). Her son’s version of autism meant it was difficult for him to communicate. Learning the basic routines of school and life was challenging for him. This mom, like so many other parents, was a relentless champion for her son’s needs.
One day this mom shared an inspiring idea she’d hit upon in thinking about her son’s future. She knew her son could replicate routines well once he learned them. In fact, once he learned a routine he pretty much never forgot it – it was hardwired into his brain. This is common for most kids with autism. They love routines, and they thrive in an environment of sameness.
And so the hotel connection. Every hotel room has a set menu of items that must either be replaced or returned in between guest stays (e.g., coffeemaker, note pad and pens, ice bucket, glasses, cups, etc.). It’s a predictable structure, and one that is replicated in hotel rooms everywhere. My friend figured that perhaps working at a hotel making sure each room was stocked and furnished exactly the same way every time a new guest arrived was a type of job that matched her son’s strengths. She was thrilled at the prospect of potentially discovering a way for her son to earn a salary at a job that utilized his skills. Not just a feel-good, volunteer experience. But a real job for real pay with real responsibilities. And even though her son was still in elementary school, this mom knew she needed to start planning for her son’s future early and often for him to have a chance to work.
Yes, every parent has the same goal for their child – a life with strong relationships and meaningful work. But when your child is disabled, it often means a radical realignment of how those goals will be met. It means you don’t start out with the same set of basic assumptions parents of children without disabilities have, because you can’t assume your child will master basic job or life skills. Or, even if your child can occasionally demonstrate these skills, learning to sustain them over time in a bottom-line, real-world environment that might not accommodate the ups and downs of life with a disability can be daunting. You worry that once school ends, your child will be stuck in a netherworld between childhood and adulthood — never quite transitioning to independence, and never realizing the satisfaction of being an adult.
For people with disabilities, there is often a substantial gap between school skills and real life skills. So, when school ends, the transition to the real world can be terrifying. That’s why, even with all the remarkable progress that’s been made educating children with disabilities, the sad fact remains that the employment rate for people with disabilities is unacceptably low. According to the U.S. Bureau of Labor Statistics, only 21% of all disabled adults participate in the workforce, compared to 70% of their non-disabled counterparts.
I’ll spend subsequent blog posts examining how various entities are tackling this complex issue, with focus on some successful college and job programs for people with disabilities.
Beth T. Sigall
December 2, 2011