Impact Feature Issue on Parenting Teens and Young Adults with Disabilities

Family support is key to healthy adolescence. Families enable children to experience attachment, belonging, competence, and self-esteem, as well as success and failure, adventure and retreat, independence, and interdependence. For families who have teens with disabilities, adolescence can be especially challenging because, like most parents, they often find themselves at odds with the teen who wants to experience life, develop individual values, and achieve independence (Tempke, 1994). At the same time, when a child is vulnerable, parents may view control as a responsibility to ensure safety. Parents may have extensive fear of how the world will treat their child, and may hesitate to give-up their primary role as protector and advocate. In spite of this, teens with disabilities want and need to experience the same things as all adolescents, no matter how significant their disability. 

Transition assessment and planning during adolescence often focus on academic and vocational development, yet moving into adulthood is more than that. It also includes psychological, social, emotional, and sexual development. As Gerber and Okinow (1994) put it:

Adolescents with chronic illness or disability experience the same developmental transitions as their peers without disabilities, yet their illness or disability places them at risk for certain psycho-social problems as they move into adulthood. The risk is not solely in the medical complications of the illness or disability... rather risk is more often related to the degree of fit between the adolescent and his or her environment: family, school, peers, health care services, work, and societal attitude. The fit can lead to optimal integration and development, or it can result in isolation and low self-esteem (p.1). 

Families play a pivotal role in supporting healthy adolescent development in all these areas, and in fostering positive connections between teens and their environments.

What Families Can Do

It is important for teens with disabilities and their families to have information from physicians, teachers, social workers, and other families about adolescent development, and to receive encouragement to create a vision of adulthood. It is also vital that they experience opportunities to share their dreams and hopes, fears and frustrations, and to dialog about their visions for the future. Autonomy, independence, problem-solving, and constructive role-related changes will increase if families can build safety nets amid the fear of life-threatening decisions and risk-taking that are part of the teen experience.

The National 4-H Council has identified eight “Keys for Kids” (University of Minnesota Extension Service, 2006),experiences that are essential to healthy youth development. They are:

• Security: Youth feel physically and emotionally safe (“I feel safe”).
• Belonging: Youth experience belonging and ownership (“I’m in”).
• Acceptance: Youth develop self-worth (“What I say and do counts”).
• Independence: Youth discover self (“I like to try new things”).
• Relationships: Youth develop quality relationships with peers and adults (“I care about others”).
• Values: Youth discuss conflicting values and form their own (“I believe...”).
• Achievement: Youth feel the pride and accountability that comes with mastery (“I can do it”).
• Recognition: Youth expand their capacity to enjoy life and know that success is possible (“I feel special”).

It’s important that all adolescents, with and without disabilities, have opportunities to establish these building blocks through experiences within and outside the family context. 

Conclusion

Adolescent development is more than high academic expectations, career development, and independence. Families play a pivotal role in supporting teens to explore their identities and make connections with peers and other adults. Understanding all aspects of adolescent development helps families of youth with disabilities and those who work with them address these critical issues and support the transition from childhood to healthy adulthood.