Impact Feature Issue on Parenting Teens and Young Adults with Disabilities

I was once told that good parenting is the art of graciously giving ground. So it goes. Children challenge their parents as they age, steadily asserting their own identity. A two-year-old refuses to drink her milk. A ten-year-old protests his bedtime. Teens forget their chores, but remember to ask for money. 

Eventually, teens grow into young adults, and along the way, make great discoveries about themselves. They develop dreams and aspirations about what sort of work they want to do, where they want to live, and what they like doing for fun. Discoveries are also made about one’s sexuality. Boyfriends and girlfriends eventually come around, as do thoughts of love, marriage, and having a family of one’s own.

Youth and young adults with developmental disabilities come through these same transitions. Overall, the tensions around “transition” do not exclusively center on education or employment, but to a greater extent involve life issues related to a passage from “child-to-adult.” 

Certainly, no two people are alike and individual transitions vary. Many considerations must be factored into how parents think about their son or daughter becoming an adult. These include the individual’s age and level of disability, and the significance of the life decisions that must be made. The challenge is not to discount this passage due to the individual’s disability, but to embrace it and find ways to mentor youth with disabilities to grow into strong men and women.

In our work with self-advocates, that is, people with disabilities who speak-up for themselves, we often ask about their dreams and aspirations. Some are shy at first and have difficulty thinking beyond their present lives. They do not immediately think past their sheltered workshop or community residence, or the routine of their family life. Others are quicker to describe imagined acting careers, vacations to Hawaii or owning their own homes. After some discussion, almost all eventually reveal a range of life ambitions still to be achieved.

When we ask who is the greatest help to achieving their dreams, participants will quickly answer “my parents,” and share stories of moms and dads doing their best to help their children grow into adults. When we ask, however, who stands most in their way, participants just as quickly answer back with “my parents,” and also share their stories of overbearing, controlling parents who seemingly can’t give ground.

There are plenty of reasons to explain why parents have difficulty with the child-to-adult passage sought by their sons and daughters. Some of this resistance is rooted in the typical struggle that exists between teens and young adults and their parents. More telling, however, is the underlying dynamic that exists between loving parents and their children with disabilities, one that is often based on parents’ sober view of the impacts of disability on life functions and practical concerns for their children’s well-being. Parents may not be enthusiastic about their child with disabilities wanting to work nights in a strange part of town or move into their own apartment. 

Parents can also get nervous about relationships. I once asked a man with a cognitive disability if he had ever been in love. “Oh, no,” he said, “my mother would never let me fall in love.” Meanwhile, a mom expressed to us her concern that if her daughter became sexually active and became pregnant, that she would have to take care of her daughter and her new grandchild.

Plainly put, the more significant the cognitive disability, the more supervision and oversight parents believe they must provide. Parents worry, and often with good cause. As a result, because of the perceived risks, parents may shy from offering the type of opportunity and mentoring individuals need to grow into adults. They may opt instead to direct their sons and daughters into sheltered life activities, stabilizing these activities over time.

Many people with disabilities do not complain about life circumstances like these, playing a generally passive role in their lives. Increasingly, however, self-advocates are seeking to live lives like anyone else. More than that, they say that they want to be “the boss of my own life.” They want real jobs, a place of their own, and someone to love. Some even want tattoos and piercings. Oh my!

For young children, family support systems promote the idea that families must be empowered to identify their own needs and direct how these needs will be addressed. Families seek control of the supports they receive. As children age, however, personal empowerment themes gain in importance. The wishes of parents slowly, but surely, must give way to the preferences of their adult children. The challenge is to find means for offering supports to individuals that honor their preferences as emerging adults, but factor in real concerns for their well-being. After all, good support can set a person free. Inevitably, moms and dads, while graciously giving ground, are essential to helping their sons and daughters with disabilities to imagine a full life in their community and make a safe passage from child to adult.