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Parenting a child with a disability: The teen years

My sister was born with severe cerebral palsy. Being the “typical” sibling, I remember our teen years were sometimes tough — I certainly wasn’t always a joy to be around, and I know how frustrated she was as a teen with special needs.

If you’re parenting a disabled and non-disabled child, read more about how to get through the teen years from a mom and siblings who have been there.

Dealing with hormonal changes

“Depending on the disability, the unique challenges of puberty and adolescence will vary,” explains Leslie Petruk, M.A., LPC, NCC, a therapist who is also a mom to typical children and a child with special needs.

Petruk adds, “For girls, dealing with the starting of their menstrual cycle can be significantly challenging when they have special needs. The sexual feelings that come along with puberty for boys can be a challenge, as well. It’s important to address these issues with your pediatrician or specialist so that any issues that arise are being monitored closely. Depending on the level of understanding your child has, talking to them about the ways in which their body is changing and how their hormones affect them physically and emotionally in a language that meets their developmental stage is important.”

Sibling advice

Troy McClain’s sister is developmentally delayed and profoundly deaf. He shares, “Over the years, growing up with her, I would at times get so frustrated with her limitations and obvious lack of being able to hear me talk to her, yell or try to explain my one-sided opinions on things. Instead, I would have to stop, take the time to have a face-to-face conversation with full explanations and a continued line of questions from her, mostly beginning with ‘why.’ If it had nothing to do with her and her daily routine or life, she did not care.”

How routines help special needs kids thrive >>

Chloe Langham’s brother was born with two rare disorders — Klippel-Trenaunay — which involves port wine stains, excess growth of bones and soft tissue and varicose veins — and Proteus — a condition that involves atypical growth of the bones, skin and head.

She says of their teen years, “The challenges I faced with him were more related to his relation to the world around him in terms of his disabilities. He found it very hard to make friends and had a hard time staying in school for prolonged periods of time because of his frequent stints in the hospital. As my social life progressed, I found it increasingly hard to relate and connect with him.”

Parenting a disabled child when another child isn’t >>

Lessons as siblings get older

As adults, McClain and Langham offer unique perspectives.

McClain may have been a frustrated teen with his sister’s focus on her routine, but now he runs a multimillion dollar corporation and credits his success to his disabled sister. “I challenge any true professional to run an organization without a routine,” he says. “They couldn’t do it. I learned to set this type of lifestyle in place through my kid sister!”

Langham adds, “I believe it is crucial to encourage your family member to explore all avenues of who they are and to try to make sure that they don’t feel hindered or socially alienated because their disability. It’s impossible to imagine what it feels like to live in their body, but encouragement and support from family goes such a long way.”

More on parenting a child with a disability

How siblings cope with a disability
Parenting a disabled child: Welcoming your child to the family
Special needs kids and well siblings

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