Approaching Independence with Special Needs
Guiding a child through the pitfalls of adolescence is one of the greatest challenges you will face as a parent. If your child has special needs, make a plan to address additional concerns you may encounter as she transitions from adolescence to young adulthood and the prospect of independent living.
Each child has unique needs and challenges, according to Elif Merkler, a clinical psychologist in private practice in Carrboro. “Parents can ease the transition of adolescence by providing tools that will enable their children to realize their fullest potential on the way to adulthood,” she says.
Plan to be proactive
The onset of puberty is often parents’ first challenge in handling the changes that come with adolescence. Specific instruction and established routines can help children with special needs understand bodily changes and the importance of personal hygiene and how these relate to interactions with others during the teen years. Teens with special needs may also be more vulnerable to teasing, bullying and peer manipulation.
“Parents can protect their children from becoming victimized by helping them define what a friend is and explaining how to effectively interact with their peers,” Merkler says.
Chapel Hill resident Ruth Thomson took an early, methodical approach to adolescence with her 13-year-old daughter, Peri, who has autism. Thomson initiated conversations with Peri about puberty’s physical and emotional changes “to give her a heads up about what to expect. Peri tends to compartmentalize her life, so when she became a teenager, she already had an idea of what that would entail,” Thomson says.
Because Peri responds well to concrete information, Thomson keeps discussions about bodily functions matter-of-fact and casual so the topic does not become a source of anxiety for her daughter. She coaches Peri on what to say and do in social situations such as inviting friends over and attending school dances.
So far, peer pressure has not been an issue.
“Peri has good relationships with her peers at school, and she is very rule-oriented,” Thomson says. “We’ve talked about the importance of protecting her body and the consequences of smoking and drug use.”
Embrace life’s possibilities
In Thomson’s view, Peri’s autism is not a disability; it is what makes her special. That mindset is ahead of the curve, according to Gerri Smith, advocacy specialist with the Arc of North Carolina, which offers services and advocacy for people with intellectual and developmental disabilities.
“We are still living with a medical model where many families look at a disability as something to be cured. However, once you accept the disability as another part of life, you can focus on advocating and supporting your child to be all he can be,” Smith says. As the mother of Marcel, 25, “a cool young man” with a developmental disability, Smith believes that the key to enabling a child with disabilities to reach his full potential involves “the dignity of risk.”
“I encourage parents to have high expectations for their children and allow them to try new things. If they fail, so what? The most enduring life lessons are taught through trial and error,” Smith says. Marcel currently lives at home, volunteers and has a part-time job. “He is free to explore moving on to independent living and will eventually take that step when he’s ready,” she says.
Allow for second chances
Sometimes independence occurs prematurely. That was the scenario for Gretchen Aylsworth of Chapel Hill when her daughter, who has a learning disability, dropped out of high school and ran away from home. “The elementary school years weren’t easy, and middle school was a disaster,” she says.
Despite additional tutoring, counseling and private school, Aylsworth remembers, her daughter “fell through the cracks and started hanging out with the wrong crowd,” eventually quitting school during her senior year. “At that point, all we could do was keep the door open and maintain communication with her,” Aylsworth says.
Eventually her daughter came home to finish high school. “I like to think that we inspired her decision to return by instilling core values in her early on, as well as an understanding that education is important,” Aylsworth notes.
When her daughter asked for a car so she could drive herself to school, Aylsworth and her husband agreed. “The deal was if she stayed in school, she could keep the car. In the end, she never missed a class and made straight A’s,” she says.
Now married, Aylsworth’s daughter works part-time and attends community college. She hopes to complete her four-year degree at UNC-Chapel Hill and someday work with children who have special needs. “She has overcome many obstacles, and we’re so proud of her,” Aylsworth says. “More importantly, she’s proud of herself.”
Visualize the future
While it can be impossible to predict what the future will bring, experts agree that it is never too early to start planning for your child’s future.
“Although it is often difficult for families to imagine what life will be like when their children become adults, the greatest tragedy is when parents wait too long,” says Walter Weeks, executive director of Wake Enterprises, which offers supported employment services for people with developmental disabilities. “It’s critically important to decide what you and your child want, how much time it will take to achieve that, and what services are available to meet your target goals.”
Waiting lists for residential facilities can be long — up to five to six years — and some will not accept a resident without a funding source to defray the cost of services, according to Thomson.
“That’s why it’s important to start early, so you can sort through the requirements and determine which ones will be a good fit for your child,” she says. “For Peri, we’re hoping for a supported apartment situation with a roommate. She’s on several waiting lists now.”
Visualizing your child’s independence can be a scary thing for parents, particularly with a child who has special needs, but it’s worth it, says Merkler, the psychologist. “Learning how to be self-sufficient is a lifelong process for special needs kids. Although it’s hard for parents to let go, with the right supports in place, your child just might surprise you,” she says.
Maria J. Mauriello is a freelance writer and communications professional and the mother of two children. She lives in Raleigh.