Kayla’s* class is starting a sexual education course, but her teacher says she can skip it. Jenna’s special ed class doesn’t offer information on human sexuality. And because Abby doesn’t take gym, she misses the sexual health module taught by her school’s phys ed teacher. Although these three girls attend different schools, they have one thing in common: a diagnosis of cerebral palsy.
Such experiences aren’t unusual. Last year, a study by Dr. Laurie Glader, co-director of the Cerebral Palsy and Spasticity Center at Boston Children’s Hospital, and Dr. Susan Gray, a physician in the hospital’s Division of Adolescent Medicine, concluded that adolescent girls with cerebral palsy may be missing out on important sexual and reproductive health guidance. Specifically, they found that, compared to their peers, young women with cerebral palsy were significantly less likely to receive education and information from their parents about abstinence, methods of birth control, sexually transmitted infections (STIs), how to use a condom and how to prevent HIV.
Up to about half of teens with cerebral palsy have intellectual as well as physical disabilities — but that’s not a reason to exclude them. “This doesn’t mean that these kids don’t need sex ed,” says Dr. Gray. “They just need it in a way that’s individualized so they can understand it and use it.” She recommends that parents request that their children receive sexual education and even ask for it to be written into their IEP for school. Here, she and Dr. Glader share six more things parents can do to ensure that girls with CP and other disabilities get the information they need.
Don’t assume she won’t ever be sexually active.
Sexuality is a normal part of growth and development, but one that’s often dismissed or ignored in people with disabilities. Yet having a physical disability doesn’t necessarily impact a person’s degree of sexual activity, even in teens. To be able to have frank discussions about sex and intimacy with your child, you first need to acknowledge that she is a sexual being, just like anyone else, says Dr. Glader.
Remember it’s a process.
Many parents dread having “the talk” with their kids, but the truth is that sexual education is an ongoing conversation that starts much earlier than adolescence. That means teaching your daughter the proper names for her anatomy, explaining privacy, inappropriate touching and puberty, and discussing gender identity and sexual practices at different stages as she gets older.
Get her vaccinated.
Human papilloma virus (HPV) is one of the most common STIs and certain forms can increase a woman’s risk of developing cervical cancer. The U.S. Centers for Disease Control and Prevention recommends that girls and boys get vaccinated against HPV around age 11 or 12. However, parents of girls with cerebral palsy may falsely believe the vaccine isn’t necessary for their daughters.
“I often hear, ‘She’s already been through so much. Do she really need this shot, too?” says Dr. Gray. But the assumption that teens with CP won’t be sexually active may put them at greater risk for HPV in the long run. The vaccine has another benefit: For girls with mobility impairments that make it difficult get on an exam table, protection against high-risk HPV virus types can potentially translate into a decreased need for Pap smears to monitor abnormalities in the future.
Be a trusted resource — and help find others.
“We’ve found that girls really appreciated it when their parents and siblings talked with them about sex and relationships,” says Dr. Glader. “They want information from people they trust.” That doesn’t mean you have know everything — it’s okay to admit it if you don’t have all the answers, as long as you help her find them. Your daughter’s pediatrician, adolescent specialist or gynecologist can be excellent resources.
Provide a safe space.
Parents of kids with disabilities are used to being very involved in their child’s care, but alone time is important, too. Girls are much more likely to discuss sexual and reproductive concerns with their physicians if they’re guaranteed confidentiality, says Dr. Gray. Give your child space to have those conversations with trusted professionals.
Be aware of medication interactions.
A number of teenage girls with CP take hormonal contraceptives to help control their periods — but parents and clinicians may not be aware if they also rely on them for birth control. Because other medications commonly prescribed for kids with CP — such as anti-seizure drugs — can lessen the effectiveness of certain contraceptives, it’s important for your daughter’s providers know about all of the medications she takes.
* Name changed