Developmental Disabilities and Menstruation
Dr. Mary Elizabeth Christian's daughter, Grace
For some, approaching conversations around puberty and menstruation with your child can feel intimidating, but if you add a disability into the mix, you may be grappling with even more questions on how to help your child navigate this next stage of her life. Will my child be able to independently navigate her period? Is it best to stop her period all together? How can I help prepare my child for menstruation and bodily changes at the level she needs to understand? Unfortunately, menstruation for individuals with disabilities is still an area that is under researched, but there are some resources available that make planning for this next stage a little easier. Compiled below is a list of possible resources for you & your child, as well as personal insight from Dr. Mary Elizabeth Christian based on the experiences she had teaching menstrual care to her own daughter with PCDH19 Epilepsy.
Introducing the Conversation
Like any child nearing puberty, it is important to prepare your child for what this stage of her life will look like. Many families choose to do this by providing books to their child to read or reading books together. If your child with a disability needs more explicit teaching or simplified reading options, social stories can help lead the conversation. Social stories are short stories, typically written in the first person, designed to concisely describe a situation and teach the desired expectations and outcomes during that situation. These are great teaching tools for children with autism or those who require direct instruction of a concept. Possible options:
Social Story Examples
Growing Up Social Story Set (wearing a bra, changing pads, private parts, etc.)
I'm Growing Up! A Girl's Book About Puberty & Having Your Period
Teaching the Process
As a general rule, if your child is able to use the toilet independently, she will likely be able to learn how to handle her own menstrual care. That being said, it may take longer for a child with a disability to learn the process and require more explicit teaching than a child without a disability. It is best to start discussing and teaching the skills needed for menstruation care well before you expect your child to have her first menstrual cycle (up to a few years prior to the expected start date, depending on the support needs of your child). This will allow adequate time for her to learn the skills necessary before it is needed to be put into practice.
If your child receives ABA therapy, the teaching of menstrual care is something you can bring up to her therapist and ask for his/her recommendations on how to teach this skill. If not, it still may be helpful to approach this skill through an ABA lense.
Some things to consider when teaching your child how to handle her own menstrual care:
Explicitly teach the necessary vocabulary first. Before walking through the steps of care, your child must know the needed vocabulary to understand the process (i.e., clean pad, dirty pad, undies, etc.).
Introduce steps slowly based on your child's level of need and understanding. For example, your child may need you to scale back teaching her to put a pad on her underwear (e.g., Teach to open the pad first. Once mastered, teach to open, then stick on underwear while it is laying flat on the table. Once mastered, teach to open, then stick on undies while wearing them).
You will likely need to explicitly teach what to do with a dirty pad. Consider having a system in place that is ideally transferable to any setting. One practical suggestion for young women with fine motor challenges is to teach your child to put her dirty pad in a wax bag (example) and then dispose of it in the trash. This can allow the child to be more independent in the disposal process.
In addition to or in place of pads, period underwear may also be an option for your child. Period underwear is washable, reusable underwear that is meant to absorb menstrual fluid. It should be noted that this may not work by itself for all young women, but it could be supplemental to wearing pads or using other menstrual products.
Examples of Period Underwear
Alternatively, some people may consider birth control for their child. This, of course, should be the decision of your child whenever that is possible. However, if your child is unable to make this decision and you believe it may be the best option for her, you should talk to your child’s doctor about the pros & cons of this decision. Birth control can be used to slow menstruation, help with regularity, or in some cases, stop it all together. If you are interested in learning more about birth control options specifically for young women with disabilities, you can read more in this research-based article: Menstrual Manipulation for Adolescents With Physical and Developmental Disabilities. Embedded within this article, you will find an easy-to-read resource (Table 1) that explains the benefits & concerns for various menstrual manipulation options for young women with disabilities.
Though there is no single right way to approach menstrual care for your daughter with a disability, there are various options to try to see what works best for your daughter. The earlier you can plan ahead, start talking to your doctor, and start conversations with your child (as appropriate), the more prepared you will feel when this change comes.