Puberty and the special needs child

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Pu•ber•ty, n.A physical and emotional rollercoaster that kids begin riding anytime between ages 9 and 14, lasting about five years.

Pro•cras•tin•ate, v. The parental tendency to put off talking to kids about puberty, characterized by sudden speechlessness and embarrassment.

No matter how it’s defined, puberty is a sensitive topic for typical kids and parents. So imagine navigating adolescence with a child who has autism, Down syndrome or other physical or mental disabilities.

“We all go through puberty whether we’re cognitive or not,” says Pamela Murphy, M.D., a Phoenix mother and pediatrician who specializes in treating kids with special needs. As president of the Special Education Parents Advisory Council (SEPAC) in Scottsdale, she teaches parents how to educate their children during this developmental stage.

“Social-sexual awareness and education is very important for teens and young adults with cognitive disabilities,” says Murphy, who is navigating adolescence with her own teenage son. “When it comes to puberty and sexuality, I want to be his number one source for information.”

Andrew Case of Phoenix.

Lisa Case is a Phoenix mom who has turned to Murphy for advice. She wants to be prepared to teach her children about the changes their bodies will make. Case has three children; 12-year-old Andrew has Down syndrome and 9-year-old Christopher has autism. She also has a 7-year-old daughter, Kallie, who is gifted.

“Andrew has begun puberty and we need to talk to him,” she says. “My biggest concern is that he won’t understand what is happening to his body.”

Murphy suggests breaking information into steps.

“Teach your children about sexuality just like anything else,” she suggests. “Break it down. Teach your daughter about menstruation by saying, ‘This is a pad.’ Then talk about cramps, then PMS. Present it in a concrete way. If your daughter is potty-trained, then she’ll probably be able to take care of her period.”

Just like with typical preteens, repetition is important.  Murphy says it’s also important to define terms.

“When you talk to your child about privacy, that might mean something totally different to him than it does to you,” she says. “The school bathroom isn’t necessarily private.”

The definition of a “stranger” also might differ. Special needs kids are often very friendly and may want to hug everyone—including complete strangers. Murphy suggests creating a visual aid by taping the child’s photo on the wall and then surrounding it with colored circles. The circle closest to the child, the “hug circle,” includes photos of mom and dad.  Next, the “far-away hug circle” might include cousins or close friends, and so on. (Find more information about the Circles teaching method, created by the James Stanfield Specialists in Special Education.)

“Andrew is so trusting toward everybody,” says Case. “I worry about someone taking advantage of him.”

Unfortunately, the numbers are not in Andrew’s favor. Murphy reports that between 60 and 90 percent of developmentally disabled girls are sexually abused by age 18. For boys, the number is 30 percent.

Children with intellectual disabilities are often viewed by perpetrators as easy targets for abuse. Parents who openly communicate with their kids and teach them about appropriate behavior can help keep them safe.

“Practice role playing at the dinner table,” suggests Murphy. “What should your kids do if someone tells them to keep a secret? How is a ‘good touch’ different from a ‘bad touch’?” And always use the correct terms. If something inappropriate does happen, they will be able to accurately tell what took place.

Murphy adds that cognitively disabled children have the same desires as typical kids, although they might lack the maturity to understand them.

“We are all sexual beings,” Murphy says. “It’s especially hard to think of special needs kids in this way, but they have the same feelings.”

“Most teens with mild disabilities want to marry and have children someday,” says Murphy. “They want to become independent adults.” With open communication, parents can help their kids navigate puberty successfully and achieve their goals.

Murphy offers the following tips for parents of special-needs children:

  • Start early. Don’t wait until your child is 14 and the hormones are already raging.
  • Break it into steps. Say to your menstruating daughter, “This is how you clean yourself.”
  • Find time to sit down and talk with your child. Read a picture book about body changes together. If the child doesn’t want to talk, leave the book where he or she will see it.
  • Be very clear about relationships. “This is your dad, but he is my husband.”
  • Find teachable moments in daily life. For example, talk about a friend’s marriage or pregnancy.
  • Use accurate terms for parts of the body and bodily functions.
  • Repeat. Repetition is important for typical kids, but disabled children need to hear it even more.

Learn more about SEPAC.

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