Josh: “I want a real job –
you know, in a band.”
Most of us experienced career day in elementary and middle school. As high school students, we typically worked with guidance counselors to determine our aptitude and desire for certain jobs. Most likely, we were steered into either an academic (college bound) or vocational training group.
When my son who has Down syndrome was in school, everything he did was governed by his IEP (Individualized Education Plan). The educators who worked with him determined early on that he would not be able to read and gave up trying to teach him. (He’s learned more on his own than he did in school.) By middle school, the powers that be steered him towards life in a sheltered workshop. It was how they’d always done it. In high school he did have a chance to work in a few community settings for a short time. With the help of a job coach, he worked at Goodwill sorting shoes (he referred to it as “stinky feet work”). He also worked at a grocery store and a fast food restaurant for a few weeks each.
In the years following his graduation we moved around quite a bit – Tennessee to Toronto to upstate New York, back to Tennessee, then Maryland, North Carolina, Pennsylvania and West Virginia. (We’re nomads at heart). Traveling made it impossible to get Medicaid waiver services since each state had a waiting list longer than we planned to be there.
When I asked him what type of job he wanted, he looked me straight in the eye and said: “I want a real job – you know, in a band.”
As parents of children who have intellectual and/or developmental disabilities (I/DD), we are typically more involved in finding appropriate employment for our children than other parents. Unfortunately, I haven’t been able to find him a “real job.”
My one rule has been that I would never encourage him to take a job he didn’t want if it was something I wouldn’t do either. (Hence fast food, holding a sign in front of a pizza joint, and “stinky feet work,” were off the table.)
I’ve watched as other parents with resources create fantastic jobs for their children – enabling them to follow their passions. We see them more and more these days, i.e. the cast of Born This Way!
But without resources to spend on creating a business, what do parents do? I think the answer to that question has a lot to do with how our society values people with I/DD. I think sometimes we settle, not only for ourselves but for our children too. We’re forced to take what we can get. Sheltered workshops and day habilitation settings are still around because they provide safety and an opportunity for parents to work while their adult children are taken care of. While the advocates around them fight for inclusion and jobs in the community, parents need to know that their children are safe and happy. Some people have developed a life in these setting and are truly happy there, they should be allowed to choose to stay.
I worry about the people who rely on existing supports as they start to disappear in the name of progress. I worry for the parents of those who may not be the “stars” of the community. I fear for those who need more support to work in a typical community placement. I wonder what the families like mine (okay maybe not as severe as mine) who moved and lost their place in the Medicaid waiver list line will do. I’m also concerned for individuals in minority families who may not have the same access to supports as their neighbors.
As for my son and I, we’re trying something different. His passion obviously involves being a rock star. That’s how he sees himself. He even has to dress the part. Tops have to be “rock star shirts” and each outfit must have the right sunglasses to go with it.
This gave me the idea to create an online store for him to share his passion and sell “Rock Star Shades” to others who might enjoy the fun accessories he likes. I can do the backend – he can be the creative genius.
I’ve created the site and registered the business. He’s started drawing specs for his specs.
Now we need a bank account and inventory. It may take us a while to save up the capital we need, but he’s already excited to be a business owner.
So far, he’s apparently satisfied that owning a business is a “real job.” I hope it stays that way because as much as I love him, he can’t carry a tune in a bucket. 😀
I’ll keep everyone updated as we attempt this venture.
You’ll find our FundRazr here: Click
Wish us luck!