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Working from a Parent's Perspective

 

Salvatore (Sal) Amenta

Today's parents have reasons to worry about their kids working.  With youth unemployment double the national average, many young adults are still living with their parents because they cannot support themselves in today's economy.  Even after competing fiercely for part-time jobs, many are taking jobs below their abilities.  But as parents of children with disabilities, we defy those odds.  We advocate for them, often for jobs no-one else wants, because we know they are perfect for our kids, who are loyal to a fault and happy not to move "up or out".  Still, the waters are rough indeed where we sit, especially if the family boat is also loaded with our parents in their second childhood.   

If this is depressing, what encouragement can one offer parents of children with intellectual disabilities?  Our experience as retired teachers with a 30-year-old-living-at-home-and-working, one-and-only child. 

I used to dream of having a child who could recite Latin poetry before going to school, like John Stuart Mill.  Ironically, what woke up me up from this philosophical fantasy was hearing that my little boy was yawning in kindergarten and sleeping through Grade 1 French Immersion!  It foretold his identification in Grade 3.  We hated labels, but used them to shop around for the best programs and teachers we could find in Ontario's public and separate schools.  As a result, we got our son the help he needed to swim down the special education stream, with some inclusion, and graduate in 2001.

 

While JP was still in high school, we took the initiative to find him volunteer work because we wanted him to be occupied constructively, and to mingle with adults in the community, since his peer-relations always left much to be desired.  After several failed attempts, one proved very successful when we found the perfect supervisor for him:  Mr. Jennings, a kind, soft-spoken, retired vocational teacher who himself volunteered as handyman at the seniors' residence across the street from his school.  His gentle guidance helped JP discover his potential as a problem-solver, and distracted him from his compulsive resistance to change (compensation for lack of control over things he cannot understand). 

In addition to his positive experience with Mr. Jennings, JP also benefitted greatly from his co-operative education courses while in high school.  His talented teachers helped him gain experience in working as well as volunteering. Thus, despite his diagnosis of "mild intellectual disability", we remained optimistic about our son's prospects, and prayed for similar opportunities in the future.

After graduation, JP's interest in anything mechanical led his support workers to place him in a Canadian Tire store, a bicycle shop, a car dealership, and a high-performance engine shop, to mention a few.  Except for the first, these proved so disastrous that JP became depressed, and swore he'd never look for work again.  It broke our hearts, but we knew things would eventually turn around because we had faith in him.  By then we had learned stern lessons in perseverance that are spared most "normal" families.

Then, just as we hit bottom, our prayers were answered unexpectedly. 

In 2005, the "Accessibility for Ontarians with Disabilities Act" was passed to encourage public and private employers to accommodate people with disabilities in the workplace.  We were fortunate that the York Region Police Service, under the leadership of Chief Armand LaBarge, took this new law seriously --  no wonder, I later learned that he sits on the CACL Foundation's board!  When the chief directed his staff to search for individuals supported by local Community Living associations, JP's employment support workers immediately thought of him. 

Eventually a young lady was placed in the mail room at police headquarters, and our son was placed at the Community Safety Village.   Now in his fourth year as its "Assistant Grounds-keeper", our son continues to work there three days a week, indoors and out, tending to the needs of a large facility that hosts professional development activities for the police service, and includes a delightful "miniature village" dedicated to teaching children safety in their community.  It opened in 2005, and features miniature buildings (bank, hardware store, train station, etc.), roads (with traffic lines, signs and lights), and pint-sized electric cars.  Visiting school-children learn not only about safety on the road --  on a bike, in a car, or on foot --  but also in their homes (fire prevention, internet safety).  We still pinch ourselves!

Talkative to a fault, JP has become a fixture at the Village, working under the supervision of an accommodating staff that accepts his quirks.  This has been essential to his longevity there -- and what was missing from most of his previous placements.  Looking back on those experiences, we can say that failure resulted from employers not understanding disability, not compensating for it with patient effort, and not valuing JP's contribution.  Success, on the other hand, hinges not only on support workers carefully screening and coaching employers, but also ongoing parental involvement.  Trouble-shooting and anticipating situations can prevent issues from becoming serious problems.  As our children's first and natural advocates, we maintain communication with both the association and the employer, but tread carefully to avoid direct involvement with the job itself.  This demands careful balance.

So what are our long-term hopes?  JP dreams of full-time work and freedom from disability supports. We wish for even more challenges and responsibilities to realize his potential.  But like all parents, we just manage day-by-day, defying logic and struggling with conflicting forces -- like balancing advocacy with independence.  We see families with gifted children breeze by us with seeming effortlessness, and families in our community whose children challenge them far, far more than ours.  As part of the sandwiched generation, we juggle our "adult child" with our "childlike parents".  We help him contribute to his RDSP while wrestling mightily with life planning.  For us, life continues with unavoidable anxiety, but we know that our son is worth the struggle. 

And now that he has a job, will JP settle down with his own family?  Only God knows, because we do not see the usual benchmarks enjoyed by most parents, whose kids seem to transition smoothly through life's phases. Those parents have no idea what our journey is like, and we can only pray for the strength to persevere despite the occasional setbacks all of us encounter. 

We have shared our experience with other families who are blessed with special children like ours.  Is this the best encouragement we can offer parents who worry about their kids working? Perhaps not, but there is comfort in knowing we are not alone, and in coming together to support one another in rough waters.