Puberty. Just the word can make parents cringe. With puberty comes body odor, body hair, menstrual periods, fluctuating emotions, and crushes. It can be a challenging and confusing time for adolescents. Adolescents with intellectual disabilities go through puberty, too, and educating them about their bodies is critical.
Dr. Susan Gray, attending physician in adolescent medicine at Boston Children's Hospital and assistant professor of pediatrics at Harvard Medical School, is committed to sexual and reproductive healthcare and education. She believes it is important to teach all adolescents about puberty, body awareness, and sexual health.
"It's especially important for parents and healthcare providers to be involved in teaching adolescents with intellectual disabilities about these topics because they are less likely to receive this information in school," Gray said. "And they need to receive this information from people they trust, who can give them medically accurate information in a way they can understand. Teaching adolescents with intellectual disabilities about what kind of touching is appropriate or not is important for self-esteem and for preventing sexual abuse."
Parents may feel overwhelmed at the thought of how to educate a child with intellectual disabilities on such topics. Fortunately, there are skilled medical professionals and an abundance of resources available to help.
"We are lucky in Massachusetts to have many adolescent medicine specialists throughout the state," Gray noted.
Adolescent medicine specialists receive two to three additional years of fellowship training after completion of a residency in pediatrics, internal medicine, or family medicine. They may see patients for routine primary care, but they also consult on topics such as normal growth and development, puberty, sexuality, abnormal menstrual periods, bone health, or mental health and substance abuse. If parents would like to arrange for a child to visit an adolescent medicine specialist, a good place to start is by speaking with a primary care physician about a referral.
Ideally, puberty and sexual education begins long before puberty, Gray said. It can take place in informal conversations over many years. It may start with parents teaching toddlers the anatomically correct terms for body parts and build from there.
"Sometimes parents feel a lot of pressure to have one big conversation about 'the birds and the bees,' but talking about privacy and changes in bodies as natural opportunities arise is a good strategy," she noted. "These conversations can happen in the men's room, in the changing room at the YMCA, when kids are in the bathroom. Children are naturally curious, and it's important for them to know they can come to their parents with questions at any time."
Parents can't assume this material is being taught in their child's school, or that the curriculum is being modified to accommodate the educational needs and styles of every child.
"My opinion is that schools are trying, but sexuality education is often something that falls through the cracks for students with disabilities. It's important for parents and healthcare providers to fill in the gaps," Gray said.
Kathy Campbell of Fitchburg is the mother of two adolescent girls, one of whom has Down syndrome. She has learned that parents need to ask questions early about puberty education in school, which can mean confronting their own fears, anxieties, and misconceptions on the topic while deciding what information they want their child to learn and when.
She emphasized the need to ask why children with intellectual disabilities are the ones slipping through the cracks, and confront any reluctance to them being perceived as healthy, informed, sexual beings. Campbell said she appreciates this challenge, especially when these conversations with school representatives need to be started by fourth grade. She believes health and puberty education should have its own IEP category and goals, and notes that sometimes reaching out to the teacher responsible for offering the puberty portion of the health curriculum and providing recommendations for modified materials is effective.
Communication between parents and school staff can be very important as children experience puberty. Families may choose to request the support of a medical specialist in these discussions, Gray added.
"In general, I have found schools very accommodating to students' individual needs when a parent gave me permission to speak to a teacher or school nurse. Sometimes having a healthcare provider attend or call into an IEP meeting to support the idea that pubertal education is important and that sexuality is a normal part of adolescence can go a long way," Gray said. Where to find resources Parents can find resources on puberty and adolescence in bookstores, hospital and government websites, and through advocacy organizations.
Gray recommends the Robbie Harris books It's Not the Stork, It's So Amazing, and It's Perfectly Normal for boys and girls, as well as the American Girl Care and Keeping of You books for girls.
Maryland-based Woodbine Press specializes in publishing books on a variety of disability-related topics. The company carries four books on puberty/dating/sexuality written specifically for individuals with intellectual disabilities: Boyfriend & Girlfriends, Teaching Children with Down Syndrome about Their Bodies, Boundaries, and Sexuality, The Boy's Guide to Growing Up, and The Girls Guide to Growing Up.
Campbell said she found the aforementioned American Girl books, as well as the Woodbine Press books, Teaching Children with Down Syndrome about Their Bodies, Boundaries, and Sexuality and The Girls Guide to Growing Up, very helpful and advises parents to look at the back of these books for additional resource recommendations.
The Boston Children's Hospital Division of Adolescent Medicine websites -- youngwomenshealth.org and youngmenshealthsite.org -- feature handouts on frequently-asked questions, including everything from how to insert a tampon to how to know if you are in a healthy relationship. The websites also feature an "Ask us" function so parents and adolescents can write in with specific questions.
Gray added that the Commonwealth of Massachusetts created an excellent resource guide on healthy relationships, sexuality, and disability with condition-specific suggestions at mass.gov/eohhs/docs/dph/com-health/prevention/hrhs-sexuality-and-disability-resource-guide.pdf.
The ATN/AIR-P Puberty and Adolescent Resource: A Guide for Parents of Adolescents with Autism Spectrum Disorder can be found on the Autism Speaks website, autismspeaks.org. This comprehensive toolkit is available for download and covers body changes, self-care and hygiene, public vs. private rules, staying safe, strangers, secrets and touch, elopement, safety planning for increased aggression, and Internet safety. It includes visual cue cards parents can laminate to create a visual process chart for bathing and dressing, as well as additional cue cards for addressing appropriate public and private behavior. Parent testimonials, role-playing exercises, guidance on how to establish appropriate self-care goals, and ways supplemental occupational therapy services may help during puberty are also included.
Campbell recommends a website by the Center for Parent Information and Resources that lists a variety of reference materials on the topic, including a section on Sexuality and Disability at parentcenterhub.org/repository/sexed/. Advocacy organizations The Massachusetts Down Syndrome Congress (mdsc.org) shares resources on various topics at conferences, said Executive Director Maureen Gallagher. In addition, the organization's AIM: Teen and Young Adult Program provides opportunities for participants ages 13-22 to connect and learn about a variety of health-related topics. According to the MDSC website, "AIM participants develop leadership and self-advocacy skills, form meaningful relationships with peers, and build their self-confidence in an encouraging environment." To learn more about the AIM: Teen and Young Adult Program, contact the Massachusetts Down Syndrome Congress at 781-221-0024. Seven Hills Family Services in Fitchburg partners with the Montachusett Opportunity Council to offer workshops on the topic. Visit the Contact tab at sevenhills.org to request more information. Local offices of The Arc of Massachusetts may coordinate workshops and seminars on the subject of puberty and adolescence. Locate your local chapter by visiting thearcofmass.org. The Family Ties of Massachusetts Directory of Resources for Families of Children and Youth with Special Needs, 19th Edition - March 2016 is an invaluable tool for parents of children intellectual disabilities. Family Ties is a statewide information and referral network and a joint project of the Federation for Children with Special Needs and the Massachusetts Department of Public Health, Bureau of Family Health & Nutrition, Division of Children & Youth with Special Health Needs. The directory is available for download at massfamilyties.org and contains contact information for organizations, agencies, and service providers across the state. It is organized by subject matter, as well as geographic region, and is an excellent way for parents to track down very specific resources.