Note: This is a version of something I originally wrote for my husband, who doesn’t know much about periods, so for this article, I assume my audience is a mix of men and women.
My daughter Abbie (not her real name) is ten years old, with chopped brown hair and freckles sprinkled across her face. She has a genetic condition like Down’s Syndrome, except hers is a duplication of the 8th chromosome instead of the 21st. She was diagnosed with type 1 diabetes around age two and a developmental delay later that same year. Just a few months ago, she was diagnosed with autism. She’s a 6-year-old in a 10-year-old’s body.
It was Abbie’s autism evaluator who brought the topic of periods and disability to my attention when she reviewed Abbie’s diagnosis with me. We were talking about how Abbie would likely need lifelong care because of her delays and medical needs. She brought up the topic of periods and said, “You know, when she starts puberty, you can make her periods go away so you don’t have to deal with all that. Just put her on birth control. A simple shot will do it.” I had no idea that was a thing, and it didn’t sound so simple. So I decided to read all I could about it.
It turns out it’s not so simple. After reading several journal articles, I realized that this is a vast and complicated subject.
The World of Periods and Puberty – Emotional and Physiological Changes
The average girl will have her first period (menarche) between 11-13. This milestone is no different for girls with developmental disabilities. All girls, regardless of disabilities, will experience the cramps and mood swings that come with having a period. The first 6-12 months of menstrual cycles may be irregular and spotty. Cycles generally regulate after a year or so.
The onset of a girl’s period indicates that growth is slowing down. Bones are just about done growing, and major bones solidify and fuse at the joints. A girl is just a few years away from her final height.
All girls need to be aware of puberty changes before they happen, so parents should frequently talk with their daughters about changes to expect, at minimum, around age 10 for typical children. For kids with cognitive disabilities, it’s probably a good idea to start sooner since it often takes time and repetition until complex concepts (like puberty) sink in.
Adolescents with disabilities need period- and puberty education adapted to their learning styles and needs. It’s easy to think that people with mentally disabilities are asexual or unable to understand the concepts involved with puberty changes. But they do have a spectrum of sexual feelings. Treating them as if they don’t only leads to problems later. As with most parenting issues, having open communication goes a long way in making all kids feel comfortable and understood.
Reasons & Methods to Suppress Periods
Parents and caregivers can have a lot of anxiety around the idea of their child with disabilities dealing with her period. They may be concerned with the practical side of their child changing pads in public restrooms. For girls with disabilities that may still need toileting help, the idea of dealing with a period can seem overwhelming to both the caregiver and the child. Suppressing periods can be an option to simplify life.
Many birth control methods have the side effect of suppressing periods. The most effective is the shot (Depo-Provera). Unfortunately, research suggests that Depo-Provera causes bone mineral density loss. This loss might be especially concerning in teens who haven’t reached their peak bone mass. It’s unlikely that this loss is reversible.
There are two birth control methods that are effective at suppressing periods and have the least side effects. One is birth control pills (continuous combined oral contraceptives). There are several different options and brands to choose from. With continuous use, up to 88% of women reported their cycle stopping after one year. The downside of this method is that a pill needs to be taken at the same time every day for effectiveness. But this may not be a problem if a parent or caregiver helps the child remember to take their pill every day.
The other method is a birth control patch (transdermal combination contraceptive), which has similar effectiveness as the pill, but has the added benefit of only needing to be applied once weekly. The patch can go on the upper arms, belly, buttocks, or even the back between the shoulder blades to prevent the child from picking at it. With both methods, adding a regimen of NSAIDs (Motrin, Advil, etc.) during the week of menstruation decreases discomfort and bleeding by reducing prostaglandin production, the hormone responsible for period cramping.
Sexual Abuse – Rates and How to Prevent
One of the startling things I came across when looking at the literature on this topic is the link between independence in caring for oneself and sexual assault.
Girls with cognitive disabilities have a huge risk of sexual assault. The US Department of Justice reports that 70-80% of women with developmental disabilities will be sexually assaulted in their lifetime. Less than half of them will seek treatment. Reasons for this increased risk include: inappropriate social skills, poor judgment, inability to seek help or report abuse, and lack of strategies to defend themselves against abuse. Out of fear, caregivers tend to shelter their child with disabilities by physically keeping them away from others and keeping them in the dark about sexual topics. Unfortunately, this can have the opposite effect and often doesn’t actually keep them safe. Furthermore, one author notes that “praise for cooperation and following commands makes a [child] vulnerable” to harm from non-caregivers.
Self-esteem is one deterrent to sexual abuse. Girls who are confident in their abilities are less likely to be taken advantage of. Parents should help their children with disabilities become independent and resist the urge to infantilize them. Practically, girls who realize they can care for themselves (as much as possible) need less help from others. This equals fewer situations with non-caregivers where sexual assault is more likely.
One author notes: “Abuse prevention should include “NO-GO-TELL” so that youth understand to clearly say NO, to physically GO away when able, and ultimately to TELL a trusted adult.”
Conclusion
When I first started looking into this topic, I honestly thought I was being a bit silly for taking it so seriously. I wondered if we should take the expert’s suggestion and get Abbie a shot to make her periods go away when the time comes. After all, they know more than me, right? I am glad I did the research. This topic is so much bigger than period care. It includes even bigger topics like bodily autonomy, self-esteem, sexual abuse, medical care, and what Abbie’s adulthood will look like. I have only scratched the surface.
I’m inspired to work with Abbie more intentionally on bodily autonomy. This includes things like bathing, diabetes care, dressing, and even food prep. In the past few months, she has expressed a desire to bathe/shower herself. I’m usually in a rush, so I bathe and wash her hair myself. But in light of this new information, I have been taking more time to teach her to wash her own body and her hair. It’s not perfect, but she is making progress. And she feels capable and good about herself. Abbie needs to learn and to feel that she is in charge of her own body. This will help protect her immensely in the future.
This also goes with medical care. We should listen to Abbie when she tells us where she wants her diabetes pump or monitor to go. In the past, I would ignore her wishes and do whatever. But it’s important that Abbie realizes she has a say in where her medical devices go on her body (within reason, of course).
We need to treat Abbie as a normal girl entering puberty. I bought several books about puberty, periods, and how babies are made, and my project will be reading them with her. I plan to have a special tea time once or twice a week where all the girls read the books with me. The more I read about girls and puberty, the more I realize that it should be a normal thing talked about from a young age. Most of the books go over the idea of bodily autonomy and cover the “NO-GO-TELL” strategy to help girls realize that if someone touches them in a private area, it is NOT okay and is something they need to tell a trusted adult about immediately.
My head is dizzy with the implications of teaching Abbie more independence. For instance, her goal is to attend a sleep-away diabetes camp next year. Do we let her do that? We would have a long list of things to teach Abbie to do independently before going, such as bathing completely independently, finding out from camp counselors this year what kind of independence she is expected to have (for instance, do typical 11-year-olds keep an eye on their own blood sugar?)
In the past, all this has seemed so overwhelming. I didn’t see any desire in Abbie to learn to take care of herself, and I didn’t see the point in even trying to teach her since it seemed likely she would live with us for the rest of her life. I resigned myself that we would have an adult 10-year-old forever. But after reading all these articles, I have hope that Abbie can reach a level of independence. And it’s vital that we help her as much as possible.
Resources
Books about puberty and periods abound, but it can be tricky finding titles written for kids with intellectual disabilities. Here are some that I have found helpful for Abbie:
- The Girls’ Guide to Growing Up: Choices & Changes in the Tween Years by Terri Couwenhoven— If you only get one book about puberty and period care, make it this one. It’s written at 1st-2nd grade reading level and is perfect for reading through together. There are tasteful illustrations and step-by-step photos like the occupational therapy photo guides Abbie is used to.
- The Care and Keeping of You 1: The Body Book for Younger Girls by Valorie Schaefer— This is written at a 3rd-4th grade reading level and has engaging illustrations.
- Yes! No!: A First Conversation About Consent by Megan Madison, Jessica Ralli, & Isabel Roxas— a wonderful starting place for teaching kids about consent for touches, hugs, tickles, all of it. I love that the authors point out that it’s okay if others’ feelings are hurt because you’re uncomfortable with giving a hug.
- Own Your Period by Chella Quint — This is written for grades 4+, so a bit above my daughter’s level, but it was worth getting for the great illustrations and pro-girl attitude. Parents and caregivers can choose to read excerpts or just look at pictures.
- It’s So Amazing! By Robie H. Harris and Michael Emberley — I’ve been using this as a reference rather than reading straight through it. It’s written at a 2nd grade level, so it’s perfect for my daughter’s level.
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