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| Martha Rial, Post-Gazette Libby Powers (right) age 17, applauds her friend Lauren Hatcher's (left) age 14, putt during a golf lesson at weekend retreat for teenagers with disabilities at Woodlands Foundation in Marshall. Powers has spina bifida and Hatcher has cerebral palsy. Both girls are from Sewickley. Click photo for larger image.
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Typical adolescent concerns about looking good and being accepted by peers can be more overwhelming, positive feelings about oneself, more elusive.
Like all teens, those with disabilities need to establish their own identities, achieve separation from parents, and strive for a place in the world. But their journey to adulthood is immeasurably more complicated.
Many teens with disabilities experience some degree of rejection or isolation from peers. Some will come to terms with negative reactions to their disabilities and develop healthy ways to face the attitudinal barriers that will continue into adulthood. Others may not fare as well.
Sewickley residents Lauren Hatcher, 14, a ninth grader at North Allegheny Intermediate High School, and Libby Powers, 17, a junior at Quaker Valley High School, recently participated in a panel discussion about teens with disabilities for WQED-13's "Teens on Q." The segment will air at 7:30 p.m. Sunday. In a recent interview, the two girls shared some of their experiences.
Hatcher, who began high school this fall, finds her classmates to be friendly, but prone to stereotyping. "People automatically assume things about me because of my disability. They treat me like I'm younger or like I'm just kinda there," said Hatcher, who has cerebral palsy.
Powers, who has spina bifida, feels frustrated when people underestimate her abilities. "They think we're helpless. Like if you have a disability, you can't be independent." Even after two years at her high school, she says it's still a challenge to get peers and teachers to understand that "yes, I have a disability, but I can handle things on my own."
Middle and high school is the "hardest time," says Cindy Hatcher, Lauren's mother. Like many parents of teens with disabilities, she has learned that friendships formed in elementary school often do not survive the teen years. It is not because kids are cruel but because they are unable to maintain common ground.
"When typical teens are becoming more independent, our kids get left behind," says Jim DelBianco, who teaches classes on social skills for teens with disabilities at Magee-Womens Hospital.
More than ever before, teens with disabilities attend regular schools rather than segregated programs. Thanks to provisions of the Individuals with Disabilities Education Act and the Americans with Disabilities Act, many have grown up alongside their non-disabled peers. By high school, their educational supports are in place and their environments accessible.
Be that as it may, inclusion in middle and high school is more socially challenging than in the lower grades. Though integrated into the school academically, teens with disabilities can become socially isolated unless they receive emotional support and social guidance.
Where can such help be found? Individual assistance on a case-by-case basis may be available for some teens through Medicaid "wrap-around services" or private-pay mental health counseling. Also, parents can ask for services to be added to a teens' individualized education program, or IEP, at school.
Some disability organizations have stepped forward to offer support groups that help teens work on the social aspects of their lives. Some focus on certain disabilities, while others have a more general mission of providing a time and place where teens can meet peers with similar issues, improve social skills and just chill.
Socializing with "same-developing" peers as well as "typically developing" peers can benefit teens with disabilities, says Dr. Randy Phelps, a developmental pediatrician in the Child Development Unit of Children's Hospital of Pittsburgh.
Rebecca Klaw, coordinator of therapeutic social groups for teens at Pressley Ridge-Allegheny County Autism and Developmental Disabilities Program on the North Side, couldn't agree more.
"[Inclusion is] not a halfway road. We're expecting them to go all the way. It's exhausting to always be adapting to other people's standards. They need opportunities to be themselves, to talk about what's going well or not so well."
"Inclusion is great, but what we do is equally necessary," adds Rebecca Crim, youth program administrator for the Spina Bifida Association of Western Pennsylvania, which offers social activities on the campus of The Woodlands Foundation in Marshall. "Teens who attend our programs feel accepted for who they are by other kids who are going through the same thing," she said.
Disability specialists are also reaching out to parents who want to learn how to coach their teens through these trying years. They advise parents to begin early to reinforce habits that will serve their children well as teenagers. "You can't start when they're 12 or 14," says DelBianco
For starters, parents should expect children to accept increasingly greater amounts of responsibility for themselves. Likewise, parents should actively teach self-advocacy skills that enable children to stand up for their rights and ask for help when needed.
Parents should take time to help young children make friends and join activities geared to their interests. These early relationships and affiliations can provide a social network during the teen years.
Lastly, parents need to pay attention to social skills development. "There's a difference between friendship and being friendly," notes DelBianco. "Friendships can't be forced, but a person can be friendly with everyone and that can make middle and high school easier."
Here and everywhere, teens with disabilities are making their way toward adulthood and the realization of a basic human desire -- to be valued, to belong. As Libby Powers explains, "We have a disability, but that's not all of what we are."
