Mood swings, acne, and sweating, oh my! Do you hear the footsteps of Aunt Flo making her way towards your daughter?
The entire process of having your first period can be very daunting on a young girl. For someone with special needs, depending on the severity, they may lack the maturity and emotional understanding to comprehend what is happening to them, as well as, the speech to be able to describe how they are feeling to others. This creates some unique challenges that you and your child have no choice but to walk through head on. Fear not uncertain moms, dads and care providers! We have compiled the top tips based on doctors, parents, and other people with special needs personal experiences to help ease the transition of getting your child ready to have a monthly menstrual cycle.
Infertility does not mean no menstrual cycle
If your special needs daughter is infertile this does not mean that she will not have a monthly menstrual cycle. Whether or not she gets her menstrual cycle will depend on her physical maturity, her health and medical diagnosis so it’s best to speak with your family doctor for more information.
Introduce the topic of menstruation approximately 1-2 years before you suspect your child will start her menstrual cycle
We all live in the real world where you may not have had the luxury of being able to discuss menstruation to your child years before it happens but try to do it as soon as possible. Your child’s family doctor will have a general understanding of how soon you can expect your daughter to have her menstrual cycle. Some disabilities such as Sotos Syndrome (Cerebral Gigantism) can cause children to experience puberty sooner than their peers. Talk to other parents that have children with the same special needs as your child about their experiences and how soon their daughters started menstruation. This will help you get a general idea of what to expect. A good indicator of menstruation approaching is the presence of a whitish discharge in her underwear. This is hard to miss if you are doing her laundry.
Avoid the “hush-hush mentality”
As the adult taking care of your child, if you have any discomfort about discussing the topic of menstruation with your daughter you will need to check your feelings of possible shyness at the door. She will pick up on your emotions much more than you may realize and adopt your embarrassment about menstruation into her own life. This can be difficult to do especially if you have had negative experiences surrounding the topic in your own life. If that is the case, giving her the gift of being aware of the changes that will happen to her body during puberty in a positive and direct manner will bless her for the rest of her life. Teach the topic in a calm and positive voice using language she can understand.
A good example of speaking to your child in a positive manner in language she understands comes from this educational film from 1979 about menstruation. Keep in mind that this film is from 1979 and you may want to change the language and routine to suit your child today. Including proper terms such as vagina instead of “opening between your legs” to help demystify the menstruation process.
Present the topic of menstruation and what will happen to her body over and over again so that it sinks in
The educational video above does an excellent job at doing this as well. People with cognitive disabilities need to have information told to them many times over. Having “the talk” just the one time or leaving it to school to teach her is not enough. Your child may start to ask you lots of questions or remain completely disinterested. Keep at it as many times as possible so that your child is equipped and ready for this major life transition.
Have menstrual pads on display in the bathroom and written rules on the wall about how to put on a pad and dispose of the old will help permanently ingrain the steps. If your child is like many other special needs children she will need to see the process in action. Having her mother, aunt, older sister or another female family member show the process in an open way. If this isn’t possible, do anything you can to physically go through the motions of the pad changing process with your child and have them repeat what you do. Using a prop such as a doll could be a sufficient substitute. Whatever method you choose, just be sure to have her repeat the process of putting a pad on a pair of underwear and removing the old one.
If her menstrual cycle does come unexpectedly and your daughter has a full blown meltdown. It is important to get excited and affirming, downplaying any anxiety your daughter may have. Positive affirmations may include,
“This is so exciting, you have your period! I’ll get all the things we talked about."
"Wow, I am so happy for you!”
"I'm so proud of you!"
Tools of the trade
There are a wide range of menstrual products and brands on the market today. The main ones to consider are:
Pads - Pads are the most common menstrual product on the market and what everyone thinks about when it comes to menstruation.
Pads come in four main absorbency levels:
Light: Used for spotting towards the beginning and end of her cycle.
Medium/Regular: Medium menstrual flow.
Heavy/Super: Used for the heaviest days of her menstrual cycle.
Overnight: These are the heaviest absorbency. They are also larger and thicker in size to protect against leaks when she is laying down and turns in her sleep. It’s common to need to change a menstrual pad in the middle of the night on the heaviest days of a period even if it is an overnight one.
If you are someone such as a man who doesn’t have a menstrual cycle the period aisle can be overwhelming with all the different sizes, shapes, and brands of menstrual pads on the market. I strongly recommend having a women come with you and select heavy flow pads and a variety pack to have on hand in your kit. Even if you want your child to use tampons having pads on hand to try first is wise since they are more user friendly for first time users. She will also need to wear pads at night even if she is a tampon user to avoid Toxic Shock Syndrome (TSS). If your daughter has issues with fine motor skills you will want to avoid pads with wings. Peeling the backing off winged pads and making sure the adhesive on the wings sticks in the right place is a bit tedious for even veteran pad users.
Suggested brands to check out: Always Pure & Clean, Kotex Security Maxi Pads, (without wings) Any of the Always pads without wings (note: Always has started doing this thing where you select what size of pad you are so you will need to read the package closely before purchase).
Tampons - It is a good idea to have your daughter practice how to use a tampon before she has her menstrual cycle. When practicing inserting a tampon it is recommended to use a light or regular absorbency tampon with a plastic applicator that has a round top. Most tampons on the market today are made like this since they are much easier to insert. If she is practicing how to insert a tampon it’s easier for her to do it laying down on her bed or when sitting on the toilet with legs spread and one leg raised (think sumo wrestler stance) until she is more comfortable with the process. It’s important for her to relax when inserting and removing a tampon since that will relax the muscles in the vaginal wall. Since period blood provides a natural lubricant, she may need to use some lubricant such as KY jelly when practicing inserting and removing a tampon.
Many young girls think that a tampon might get lost inside them and I assure you this is not the case. A tampon can only go as high as the cervix which has a little opening about the size of a pencil tip. The opening is too small for a tampon to fit inside. The diagram below shows how to insert a tampon and what the cervix looks like.
Purchase a variety pack, if you can find it, instead of having just heavy absorbency tampons in the kit to avoid the risk of toxic shock syndrome. Tampons should always be changed every 3-5 hours without exception to also avoid toxic shock. The names for the absorbency levels for tampons are the same as pad with exception to overnights since she will need to wear pads when sleeping.
Suggested brands to check out: Playtex Simple Gentle Glide, Playtex Sport, Tampax Pure, Tampax Pearl
Menstrual Cup - A menstrual cup is a small flexible cup that goes under the cervix and is generally made of medical grade silicone or rubber. If your daughter has a latex allergy you should avoid rubber menstrual cups and use a medical grade silicone ones instead. Menstrual cups take time to learn how to fold and insert inside your vagina as well as how to remove them without spilling blood. They don’t absorb blood but hold it in place until you use the bathroom. Menstrual cups should be avoided if your daughter has issues with fine motor skills since the folding and inserting takes practice. They come in different sizes and there are a wide variety of them on the market. The general rule of thumb when it comes to sizing is how high/low is your daughters cervix during her period (the cervix moves up and down during the month so it needs to be measured during her menstrual cycle) and size of her vagina. Size of the vagina is usually dictated in two categories: under 30 and has not given birth and over 30 and has given birth. There are smaller sizes on the market now for girls who have just started menstruating. I recommend starting with pads/period underwear and moving to tampons before venturing into menstrual cups. As menstrual cups become more popular she might ask to try one. If you find the right one they can be very comfortable and last a long time. There is also no risk of toxic shock with menstrual cups. If your daughter is more independent and can go to the bathroom by herself than a menstrual cup might be worth further investigating.
Suggested brands to check out: lunette model size 1, Stem Cup by Tulip Cup, Diva Cup Model 0, Diva Cup Model 1
Period Underwear - You might hear regular underwear with fun expressions like “shark week” written on them or granny style underwear called period underwear. What I am referring to is underwear that is specifically designed to absorb menstrual blood without the use of a pad or tampon. Thinx period underwear are the most common period underwear on the market today. Their underwear can absorb up to two tampons worth of menstrual blood. They run a bit high in price but there are sets that you can purchase to save money. Since they are good quality they will last a long time thus saving you in the long run from purchasing single use menstrual products each month.
If you feel your special needs daughter will lack the understanding of when and how to change her pad/tampon at the right time you may want to consider period underwear. This is also a good option if she lacks fine motor skills. Having her wear these while she’s learning can help prevent period stains on her clothes. If your daughter has autism or another intellectual disability that makes her feel hypersensitive to particular types of fabric, using period underwear instead of a pad or tampon is a better option because the fabric feels like regular underwear.
We have a referral link here: http://ref.thinxify.me/mrXgE which helps us fund our operation and gives you a discount. You can also visit their website directly at https://www.shethinx.com.
Here’s one moms experience with getting a period kit ready for her daughter:
Have a period kit ready
Have a period kit ready at home, in the car and at school. Just like many of your relatives, Aunt Flo’s visits are often unexpected so it’s best to be ready. Some items to have in your kit are:
Menstrual Cup (optional)
Pain reliever - To help treat menstrual cramps. Midol is specially formulated to help with menstrual cramps but any pain reliever will help. It’s best to pack a mild pain reliever. This way you can gauge her symptoms and give her an extra strength pain reliever if she needs it. We’ll go into more detail about menstrual cramps further into the article.
Sanitary wipes - Wipes don’t need to be used each time your daughter goes to the bathroom or changes her pad but they are a good idea to have on hand, Menstrual blood has a way of staining a womans legs and body as they are changing their clothes or learning about how often they should change their pad/tampon. A small travel size pack of wipes can help keep her clean and fresh during the learning process.
A change of pants - black pants are a good option because you can’t see blood stains if her pad or tampon leaks. If your child is using a pad, thinner materials like yoga pants will show the outline of the pad.
A change of underwear - If your child will be using pads it’s good to make sure the crotch of the underwear has enough material for the sticky side of the pad to adhere to. If your daughter is going to use period underwear than those should be packed in her kit.
Help her embrace or at least tolerate the uncertainty of not knowing when she will get her period
Many people with special needs such as autism thrive on structure and predictable routines. Most milestones your daughter will face have a date and time that they will happen such as her birthday, holidays, start and end of the school day, graduating high school and more. Unfortunately, Aunt Flo has yet to get the memo and likes to show up whenever the mood strikes her.
For example, when I was about 8 years old my older brother and I were visiting my dad and staying over at his house for New Years. My birthday is in January and someone told me that my birthday is after the new year. Fast forward and we are counting down to midnight at my dads house. Right when we got to 5, 4, 3, 2, 1 Happy New Year I shouted “It’s my birthday!”. I was absolutely convinced in that moment that it was my birthday, not realizing that “the new year” is the entire length of a year and my birthday can pop up at anytime during that year. On a similar note, you will want to tell your child that just because you have discussed menstruation and she knows about it does not automatically mean she will start her period.
She might fake it
If you are a dad this might be uncharted waters for you. If your child’s mom, aunts older sisters and her friend Sally from across the street all have periods, chances are she is eagerly awaiting the day she will get hers. Young girls keep track of who started their period in their peer group and the one who gets theirs first is usually held in high regard. It’s a step towards womanhood and fitting in with your friends.
Celebrate her first period as a right of passage
Depending on your daughters modesty around getting her period you can celebrate with her close friends and family or do something special just you and her like having a girly movie night. Remember that key-loving little sister of mine that I mentioned in the Positive Triggers article? I mention her in the second last paragraph if you don’t want to read the whole thing. She doesn’t have special needs but when she got her first period she was very upset which is common for many young girls to feel. As a teenager I made the joke that she can celebrate it like her birthday and have a cake with red candles on it. I should have known better than to say this joke to an 11 year old because she got the impression that this was standard practice when you get your period. Long story short we ate cake that day and I made sure to tell her that this doesn’t happen every time you get your monthly cycle.
The video below is of one dads experience finding out his daughter got her period at school and throwing her a period party (note: some adult language).
Depending on her intellectual disability and communication skills, she may have a hard time communicating menstrual symptoms such as cramps, constipation, and sleepiness or describe them in different terms
If your daughter is non-verbal or has limited speech she may not be able to communicate that she is feeling pain or menstrual symptoms so try to look for subtle cues such as irritability, decreased movement and holding on to her stomach.
If she is able to verbally communicate her ability to describe something such as menstrual cramps or point to them accurately can also be imprecise. For example, many women would point to their lower abdomen when showing where their menstrual pain is located but she might describe it as a whole body pain or point to a different part of her body. A good instance of this happening is when a doctor has a patient from a different country. Culture shapes how we process and perceive the world. The way the patient describes their symptoms is going to be different than someone who is a native to that country. This is similar to someone with special needs because they have a different way of perceiving the world than other people.
You can also expect a delay in communicating pain in the body since body pain just like emotional feelings can be hard for people with special needs to mentally process and communicate accurately. This is especially the case since she has never felt menstrual cramps and other time of the month symptoms before.
She may need more practice than her peers to learn when to change her pad or tampon and to know when her pad/tampon is leaking.
The general rule of thumb is to change your tampon every 3-5 hours, more so if your period is heavy in order to avoid Toxic Shock Syndrome (TSS). Pads are more based on feel since there’s no risk of toxic shock.
If your special needs daughter has a hard time understanding the concept of time, for example, how long an hour is, she may also need assistance in knowing when to change her pad/tampon. We described above how physical feelings such as menstrual cramps might be hard for her to mentally process similar to emotions. She might have a hard time processing the feeling that her menstrual pad needs to be changed or is leaking. One of the common symptoms of autism and other special needs is to be over sensitive or under sensitive to external stimuli such as noise, light, taste, clothing and temperature. If your daughter is under sensitive to feelings such as urinating herself, physical pain and/or textures like the clothes she wears it may take lots of practice for her to tune into the feeling of menstrual blood leaking out of her pad or tampon and on clothing. It takes getting to know what a “full” pad/tampon looks and feels like as well as knowing when to change it before it happens.
She might need reminding to change her menstrual pad/tampon by her teacher if she is at school and by you if she is at home. If she is in junior high or high school where the students move from one class to another, tell her to change her pad/tampon before the start of each class if possible. Some schools are more crowded than others and students get limited time between each class to move from one room to the next. Anyway you can incorporate when to change into her class schedule works great since it becomes part of her routine.
You may see a regression in toilet training
Menstrual symptoms such as cramps can cause digestive issues such as constipation. Some women also experience reduced bladder control leading up to and during their time of the month. This also has to do with the fact that there is menstrual liquid coming out of her body in a similar region as she urinates. Since you have limited to no control over menstrual flow, the physical feeling of menstrual blood coming out of the body can feel similar to urinating your clothes.
She will adjust to the feelings of menstruation over the course of her life and this should reduce. Cranberry juice or cranberry extract taken everyday can help with bladder functioning and reducing the chances of a urinary tract infection. If you see a sudden relapse in bladder control and she is having frequent and painful urination visit a doctor right away to test for a potential bladder infection or urinary tract infection.
If constipation is an issue it could be because of stomach cramps due to PMS. When you have stomach cramps it can be painful to bear down when going to the washroom. Give your daughter a pain reliever and make sure she drinks lots of water. Eating something like oatmeal in the morning is very beneficial for digestive health. If her constipation still persists there’s an organic tea on the market made by Traditional Medicines called Smooth Move that’s highly effective at relieving constipation while being gentle on the body. It’s available in most grocery stores, health stores and on Amazon.
Women with intellectual disabilities have higher rates of mood swings associated with PMS.
Up to 18% of adult women with intellectual disabilities have PMS symptoms such as mood swings, acne flare-ups, anger, depression, breast tenderness, and abdominal cramps in comparison to just 5% of the general female population. There are some period symptoms that are unique to girls with intellectual disabilities such as hyperactivity, aggression, self-mutilation, and restlessness.
If you notice sudden changes in her behavior throughout the month it’s a good idea to calendar her menstrual cycle and take note of any mood swings that occur during the month. Many women will unknowingly start to put on makeup, accessories and dress a bit better before their menstrual cycle than they would during other days. If your daughter is otherwise a very casual dresser, but starts to do more to her looks some days than others this is a good hint to be sure you are stocked up on menstrual products.
Now about those dreaded mood swings. Do not change the regular rules you have in your house when it comes to disrespectful and inappropriate behavior. Experiencing emotions of all sorts is a natural and normal part of life. Allow the emotions but don’t allow destructive behaviors. She will need more assistance when it comes to labeling what emotions she is feeling. If she has limited verbal skills we recommend putting a visual emotions chart on the fridge. Next, teach her how to have a outlet for feelings such as anger, frustration, and hurt that are healthy instead of destructive. Behaviors create habits both good and bad. Someone with special needs that thrives on routine will strongly cling to behaviors if they become habits.
Here is a free visual emotions chart down. It's also linked in the sources below. You can find others online with a wider variety of emotions.
If she is hypersensitive fabrics and the material in her clothes she might be sensitive to menstrual products as well.
If your daughter is oversensitive to the textures, tightness and feeling of the clothing she wears you may find that she hates the feeling of wearing a pad. A tampon might be a better solution because if inserted correctly it’s easier to forget about within a few minutes. If you would like your daughter to wear pads all the time or just at night (tampons should never be worn at night due to the risk of toxic shock) there are cotton and organic cotton pads on the market and they are more comfortable than the plastic commercial varieties. Period underwear are an amazing option if she is sensitive to fabric since they look and feel like regular underwear.
If she is undersensitve to physical stimuli you will want to occasionally check when changing her pad for chafing which occurs when skin is in contact with plastic pads. Chafing doesn’t happen to everyone but it is common enough to keep an eye out for. If you notice chafing occurring due to her menstrual pads a simple switch to cotton pads or period underwear will solve the issue.
Fine motor skills
If your daughter has issues peeling stickers off paper and other tasks that require fine motor skills you will want to have her use pads without wings or period underwear. You can also have pairs of underwear with pads already in them ready to go. This way she just needs to change her underwear and a fresh pad will be waiting.
If you would like your daughter to use tampons you will want to select ones with the plastic applicator for easier insertion. Tampons without a plastic applicator such as OB tampons require some finger work to open and insert inside the vagina.
Tampons, menstrual cups, virginity and the demystifying the hymen
There is a lot of grey area around the topic of tampons and menstrual cups damaging the hymen and if that will affect your daughters virginity along with personal and religious reasons why you may want your daughter to refrain from using them. I come from a conservative town where several of my peers didn’t use tampons for this very reason. I’m going to do my best to bring some clarity to the topic so that whatever decision you make comes from a place of being completely informed.
The hymen is a thin membrane about 1-2cm (0.8 inches) inside the female vagina that develops in a female baby while in the mother's womb. This membrane is made of connective tissue, muscle fibers, along with blood vessels and nerve endings.
It is designed to prevent dirt and germs from entering the vagina and going into the body. As you can see from the picture above that shows some examples of what the hymen looks like, they come in a wide range of shapes and sizes. The hymen is not a protective shield and has an opening near the centre to release vaginal discharge and menstrual blood. Every hymen varies in degree of elasticity. Some hymens can shift and stretch during activities such as tampon insertion and sexual intercourse without breaking. It’s very common a women not to be born with one at all.
The hymen can break apart as a girl gets older through various activities outside of sexual intercourse such as sports as well as naturally dissolve over time as vaginal discharge and blood pass through it. The way a hymen looks is not an indicator of sexual activity and cannot measure of a girls virginity.
Tampon use very rarely punctures the hymen but can stretch it. The best advice is to make sure your daughter is fully relaxed when inserting and removing a tampon. It’s also helpful if she spreads her legs in a squatting position while standing or sitting on the toilet (ie. like a sumo wrestler) until she is more comfortable inserting and removing a tampon. Slender tampons like the ones listed in our suggestions under “Tools of the Trade” are good for beginners.
Menstrual cups are more likely to puncture and stretch the hymen even when folded correctly since they are wider than a tampon. Menstrual cups come in different sizes so that they can be inserted more comfortably into the body.
Fear of blood.
Since the uterus lining is shedding during menstruation, blood is not the only thing that passes through the vagina but blood clots as well. Something that many young girls don’t expect. If your special needs daughter fears blood or gets scared of menstrual blood when she sees it a very common reason why is because she fears that she has an injury such as a cut or an open wound. Try to think about it this way. The only exposure she has had to blood coming out of her body is from getting an injury or when a needle is used to draw blood out of her body like at the hospital. Both are not the most positive experiences. The best advice is to start her early on being in the bathroom when mom, aunt, older sisters or other female relatives are having their menstrual cycle. Doing this over and over again, even years before she is going to have her period will get her used to the process. The video in the beginning of the article from 1979 does this beautifully. If this is not possible have her watch the video along with others on YouTube showing her what a menstrual pad and tampon looks like when it has blood on it. When showing her in the bathroom and through images and video describe what your showing her and talk about it as nonchalant as possible.
If your daughter is unable to change change her pad/tampon/period underwear herself will someone be able to assist?
If your daughter has limited mobility or is cognitively not able to use menstrual products, is there someone at her school or at home when you are not there that can change her pad/tampon/underwear for her? This also includes after school care, therapy and sports teams that she participates in. Make sure your support network who will be assisting your daughter and know how to properly change a pad, tampon or period underwear. If you don’t want your daughter to use tampons or exclusively want her to use them during the day your will need to let your support network know as well.
We inserting a tampon inside someone else, make sure it is being inserted parallel to their body like the image below. The same holds true when pulling the string to remove a tampon.
It’s also important to make sure that the tampon is inserted into her body not too far inside or too shallow to avoid discomfort.
The lowdown on Toxic Shock Syndrome (TSS)
Toxic shock syndrome is a rare but life threatening condition that occurs when an overgrowth of staphylococcus aureus, or staph is present in the body. Most women have small amounts of staph in their bodies which is normal and harmless. It’s when this bacteria overgrows, which can happen within two days after the bacteria infects that it can quickly become fatal.
The only menstrual products that can cause toxic shock are ones that are inserted into the vagina and absorb menstrual blood such as tampons, and menstrual sponges. Menstrual cups do not absorb menstrual blood but hold it in place. Currently there are no reports of menstrual cups causing toxic shock, though the maximum recommended time limit is around 8 - 12 hours depending on the brand. Pads and period underwear are worn outside the body and do not cause toxic shock.
Toxic shock is most common among menstruating women, particularly under 30, that use high absorbency tampons for extended hours even during the lightest part of their cycle. Blood creates a natural lubricant that helps with inserting and removing tampons. If you use a super absorbent tampon during the light portion of the menstrual cycle there is less blood to lubricate the larger tampon. This can cause the tampon to create small tears on the vaginal wall making it easier for staph to access the bloodstream. Many girls will use a super absorbent tampon during the lighter part of their cycle thinking that it will absorb more so they won’t have to change it as often as using a light tampon. Strictly enforce that she change her tampon every 3-5 hours and never wear a tampon overnight.
If your daughter needs someone to change her tampon for her or needs to be reminded to go to the bathroom and change it, you and your support team (her special needs teachers, family members, etc) will need to keep diligent track of what day and time a tampon has been inserted and removed. Keep a small notebook on you that you hand to her teacher and those who look after her and make sure to write the day and the time the tampon has been taken out and a new one put inside. Be sure to look for a tampon string and pull it out before inserting a fresh tampon inside. Only one tampon should be inside her at a time. It is very easy to insert a new tampon without removing the used one first. I am pretty sure that every tampon user on the planet has done this one before. Avoid it as much as possible and remove the old tampon right away if you notice that one has been lodged inside that should not be there.
If your daughter has special needs and is heading into puberty, it is important that your support network, which may include a caregiver and or teacher are on the same page of your protocols concerning your daughter's menstrual needs.
No parent or caregiver feels 100% ready for their child to go through puberty and menstruation. When your daughter has special needs there are going to be some additional challenges along the way, but nothing that can’t be overcome. There are pads, tampons, menstrual cups, period underwear and many more options on the market not mentioned in this article that can help keep your daughter clean and dry during her cycle.
The best period support your daughter can have during this pivotal life transition is you. You have what it takes to guide her through puberty and to becoming a healthy and happy women. Now go out there and meet Aunt Flo head on! That’s all there is to it, period.
Author: Giada Crosbie
Find out more about Giada and the SNEP team here.
A special thank you to the sources below: