The life of a preteen can be fast paced and complicated. No longer is it a guaranteed period of leisurely adjustment between the happy days of childhood and the more turbulent days of teenager-hood. Preteens today deal with more academic pressure, peer pressure and time restraints than ever before. Plus, preteens with special needs are no exception when it comes to feeling the need for social inclusion.

*Deanna Greening, a homemaker from Mobile, Ala., has noticed a few of her 9-year-old daughter's friends seem to be disappearing. "Some friends remain very close. Others, as she gets older and her ability to do activities with them varies, do not seem to take the time to continue to be her friend," she said.

Greening's daughter has a condition called arthrogryposis, which primarily affects her wrists, elbows, knees and ankles. Although her daughter is able to walk now, she may be confined to a wheelchair as she gets older and heavier.

Greening says that some of her peers handle her daughter's condition, while others do not. "She has some friends that don't even notice her condition, and then there are others that treat her differently, as if her physical disability somehow is contagious," says Greening.

The Importance of Peers
Anne Juhlmann, R.N., coordinator of the Special Needs Family Center of the Children's Hospital of Wisconsin, believes that while it is important for all preteens to feel they fit in with their peers, it is especially important for preteens with special needs.

"Preteens with special needs are often labeled “different” by peers, yet probably have not reached the point where they can embrace their differences and understand that everyone is different," says Juhlmann. "Meaningful friendships and peer activities are crucial, often helping the preteen with special needs successfully progress into an adult life characterized by independence, maximum function, self esteem and acceptance within the community."

Juhlmann believes that because children with special needs are at a higher risk for depression and feelings of inadequacy, parents, teachers and other significant adults should make certain these kids are given every chance to fit in.

"It is important for parents to be willing to have friends over to their homes and to make it a priority," says Juhlmann. "Often the child with special needs will have to be the one to reach out to their peers, despite the fact that we would hope it would be the opposite."

Facing the Challenges
Preteens with special needs have been labeled “different” their entire lives. These differences seem to grow in the child's mind as they approach adolescence. Juhlmann says that children this age often begin to grieve the fact that they are not "normal" and wish intensely that they were born healthy or without disability.

"Their confidence, even if strong in childhood, may begin to waver as they begin to come to terms with their illness/disability and some of the limitations they live with," says Juhlmann. "Juxtapose this on a peer group of typically developing preteens who place great value on not being different, and it is often a situation of the typical peers not wanting to socialize with their special needs peers for fear of being different themselves."

These difficulties are often complicated by the preteens, themselves. "Another challenge is that, typically, special needs kids have grown up spending more time [than their peers] with adults such as physical, occupational and speech therapists, special education teachers, respite workers or hospital staff, and they are more comfortable interacting with adults than with children," says Juhlmann.

Throw in the fact that this is an age when preteens are increasingly self absorbed and you can have some real social challenges for the preteen with special needs.

More Challenges
Dr. Brian Abery is a researcher and the coordinator of school-age services for the Institute on Community Integration at the University of Minnesota. The “Yes I Can” social inclusion program teaches strategies to ensure that youth with disabilities are included in recreational and social activities of their choice.

Dr. Abery believes that the challenges that preteens with disabilities experience are related to both the characteristics of their disabilities and the lack of opportunities they typically have to observe ongoing interactions between peers without disabilities.

"Many disabilities, such as autism, moderate to severe intellectual disability, and ADHD [attention deficit hyperactivity disorder] have a social component to them," says Dr. Abery. "Some children with autism and moderate to severe intellectual disabilities, for example, do not communicate very well verbally – making extended social interaction quite difficult. A good number of preteens with ADHD make impulsive decisions that get them into trouble, and thus peers tend to shy away from them."

Dr. Abery points out that many of the social difficulties of preteens with special needs are due to a lack of opportunity to observe and interact with peers without disabilities. Social skills are not taught formally but come as the result of observation.

"All too often, preteens with disabilities have only peers with disabilities as role models," says Dr. Abery. "Much of this is a result of the manner in which our educational system serves students with disabilities: in segregated classrooms rather than bringing supports to them within inclusive environments. If all a preteen with an intellectual disability gets to observe are other preteens with intellectual disabilities, is it any wonder that social skills fail to develop to their fullest?"

The Benefits of Social Inclusion
If social inclusion is so difficult, why work at making sure that your preteen with special needs has a successful social experience? According to Willard Hartup, Ph.D., professor emeritus at the University of Minnesota’s Institute of Child Development, a child's ability to develop and maintain positive social relationships with peers is a good predictor of adult developmental outcomes. It is as reliable a predictor, in fact, as any other psychological, social or demographic variable including intelligence, academic achievement and socioeconomic status, says Hartup.

"Research clearly indicates that the outcomes preteens with disabilities experience as adults are dependent upon their having a circle of support that includes not only family members and paid staff but peers who genuinely care about them," says Dr. Abery.

How can concerned parents support the social inclusion of their children? Start early, says Dr. Abery. He believes that supporting inclusion at an early age tends to be easier and has better results in more social inclusion during the later years.

*Name changed to protect anonymity.

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