When your special needs daughter gets her period

Down Syndrome

From the time my daughter was born with Down syndrome thirteen years ago, my biggest concern was what would happen when she got her period.  I have learned over the years that I am not alone when it comes to parental worry on this subject.

Let me stress up front that I am not a medical professional in any capacity so what I am going to share with you should not trump your doctor’s recommendations; I am simply sharing my journey and providing some helpful hints.

When your daughter gets her period

1. Learn your school’s and nurse’s clinic’s menstruation policy

I know this sounds absolutely crazy, but this is huge. In our school district, the nurses will not provide pads or help your daughter put a pad on her underwear.  They will also not accompany your daughter into the bathroom for any reason, even if she has special needs.

My dear friend learned this the hard way and has now spearheaded the new Menstruation Policy for the school district.

Find out if your school outsources their nursing clinic, and if they do, what the legal restrictions are for their staff’s interaction with your daughter. Our school district does outsource nursing services to a nearby hospital and was appalled to find out the hospital’s policy on this issue, especially for kids with special needs.

2. Meet with the nursing staff

Meet with the nurse’s clinic at your school and let them know if your daughter has or has not begun her period.  Keep in mind, typical girls will lie about starting their period when the nurse asks, so you can only imagine what our kiddos might do.

Sit down and have a frank discussion with the nursing staff on what you want them to do for your daughter if she starts her period at school. This includes giving them the authority to go in the bathroom with your daughter. Write every detail down and have all parties sign the document.  You may need to address the issue in your child’s IEP in order to safeguard your daughter.

3. Be prepared with pads

Leave pads in the office for your daughter.  Our school district no longer gives out pads because a family sued the school when their daughter had an allergic reaction to an Always pad.

4. Alert your child’s teachers and nurse

I would also recommend emailing your nurse’s clinic and your child’s teachers on the weeks where your daughter is menstruating just so they are on alert. I also make sure my daughter goes to the nurse’s clinic before or after lunch, regardless of necessity, to change in privacy and so they can help her.  Oh yes, and don’t be afraid to keep your daughter home if she has cramps or is emotionally struggling with her period.

Should you put your daughter on birth control?

1. Prevention

This is a really sensitive issue so I’m simply going to give you some statistics, tell you what we did and leave it at that.  Google “Sexual Assault of people with disabilities”. Depending on what you read, the numbers range from 40% to 83% of adult women with disabilities are sexually abused or raped.  In fact, statistics show that people with disabilities are four times more likely to be a victim of any crime.

Those numbers scare me and although my husband and I will do everything possible to keep our daughter safe we wanted her to be protected from an unwanted pregnancy if something should happen.

2. Regulation

Another reason we decided to use birth control was so we would know when she would have her period.  This is critical in managing your daughter’s chance of having an accident at school.  It also allowed me to teach her proper hygiene when she has her period.

3. Ask your doctor

Ask your doctor about the risks associated with taking birth control and what their opinion is on this option.  Because our daughter started so young, our doctor recommended this course of action.  Through use of “the pill” you can also take advantage of skipping periods which may prove beneficial for vacations, special events at school or if your daughter simply cannot mentally comprehend the demands of self-care.

Educate your daughter

Educate, educate, educate.  And even then, don’t be surprised if your daughter doesn’t understand what is happening to her body.  Our daughter attended classes at school about becoming a woman and we talked about it regularly at home.  Needless to say, when it happened, she was very upset and emotional about it, almost as if she had no idea what had just happened.

Hormones and Emotions

I have told more than one friend that PMS and Down syndrome are a deadly duo and question why young girls with Downs would have to also incur menstrual cycles.  Anyway, the emotions can get pretty difficult to navigate.  We are almost two years out from her first period and I feel like she is finally getting control of her hormones.  Try your best to be patient and understand she will need more alone time.   I have been known to keep her at home if she is really emotionally out of control.

Unfortunately, for this subject matter, we have a limit on the length of our blogs, because there is so much more to share.  I would love to get some comments from readers with helpful hints so we can all learn together.

Valerie
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  • Karen

    I’m several years away from this discussion with my daughter w/DS, but so appreciate your thoughts.  It has been in the back of my mind for the future, so gathering info early is wonderful.  Thank you!

    • Valerie Strohl

      Good luck Karen! 

      • Ems3na

        What can you advise for kids who keep on touching their private part? I believe this is a form of masterbation to them.

  • http://www.facebook.com/beeble736 Bea Hall

    I have thought about this, even though our granddaughter (trisomy 8 mosaic) is only 4.  There is no way she will ever be able to live on her own, let alone have a family.  I truly wish that therapeutic hysterectomies were available.  I will deal with the hormones (I did with her mom!) but to save her the monthly ordeal would be a blessing.  Maybe in the next few years the stigma of “sterilizing” our special needs girls will go away, and pigs will fly.

    • Benita

      My daughter got her period when she was 5 years old , we thought that something was wrong or someone touched her in school,but the ped said that it was really her period ,I thought that I was going to hit the floor. The ped put her on a LOUPRON injection every 28 days, to stop her period until we were ready and the she had to have this shot on time, today she is 16 and is expriencing her period for the first time and every month she lets me know ,”mommy this thing is back.

      • Valerie Strohl

        Thanks for sharing, Benita. Another great alternative. And you know what, I say the same thing every month too! :)

      • Nicholedunlap1114

        hi Benita, may i ask why you decided to take her off the shot ? i am considering the depo shot for my daughter which would stop her periods and i am wondering was there side effects or a specific reason why you stopped. i am not judging just genuinely wondering why you would stop, hope to hear back from you, thx

        • Treepangolin4

          I don’t know Benita’s specific or personal reasons for stopping the Lupron shot, but medically what the shot does is in children prevent puberty from occuring.  (Lupron is often given to gender variant children to prevent them from beginning the puberty that would naturally occur given their chromosomes/hormones.  This lets the child and parent(s) buy some time so they know if the child is truly transgender and needs to take opposite-sex hormones to go through puberty of the gender that the child identifies as, without having to deal with secondary sex characteristics that are wrong for the child.)  If given to girls, Lupron prevents menstruation, but also prevents growth spurts, the growth of axillary and pubic hair, the breasts from budding, etc, basically keeping the girl in a perpetual child-like state, physically and emotionally.  It’s a good short-term solution for preventing puberty and/or menstruation, but when a child is 16 and still looks prepubescent, kids take notice.  My guess is that is one reason why Benita took her daughter off the shot.  Additionally, the long term effects of being on Lupron aren’t known well-known, and the shot is extremely expensive ($300+ per month). 

    • Valerie Strohl

      Hi Bea. Thank you for sharing your thoughts.  You also bring up another subject and when I wrote this blog post, I decided to skip it – because it is a blog post in itself. 
      I have know people to get hysterectomies for their daughter and in fact this option was presented to us by our doctor. We decided to go another route because of the health implications.  Loss of estrogen, bone density, etc., for us, represented a greater risk.
      That said…. sometimes I wish we could do it because it can be a pain and she hates having it.
      Talk to your doctor. I know families have taken this route without any issues, so don’t be afraid to ask.
      Good luck.

  • Teresa

    I have worried about this issue for several years now. My granddaughter( I am her legal guardian)  had a stroke prior to birth, has CP and Left Hemiparesis. She has a difficult time now at 11 understanding basic hygeine. I fight her everyday to brush her teeth and hair. Fight to get her in the tub. I am so scared what menstration will bring, I have spoke to our pediatricians office and asked, “what am I to do, she is not going to understand” and the reply I got was ” well go to the library, thery have books you can read about menstration and then you can tell her about it” Are you kidding me. I know about menstration, I raised 2 daughters and explained it to them, besides experiencing it myself. But because of her cognative disabilities, I know she will not understand. Thank you for sharing your story with us. I never would have thought about going to the school nurse and asking about their policy, I was just told from the school, “we are used to handling these situations” . Again thank you!

    • Valerie Strohl

      Thanks Teresa. I would consider talking to another doctor and getting a second opinion. A book is not going to do it – I know that. My daughter, who is fairly high functioning, struggles with this part of her hygiene. 
      Read the other comments. There are injections (I had never even heard of) to stop the period from coming. For us, we simply didn’t take the week off from the pill, and started the next pack, missing her period.
      There are lots of options out there, so please don’t let one doctor discourage you. Good luck!

  • Joyce

    You have enlightened me on something I had never thought about.  I do not have a special needs child of my own, however for many years I was a foster parent to many younger special needs children. I am 66 years old and am consistantly amazed at what I have failed to see or think about.  The old saying is true…judge no one until you have walked a mile in their moccasins.  Thank You and God Bless you and all of those that do have special children in their lives.

    • Valerie

      Thank you, Joyce. And thank you for helping so many kids along the way. 

  • Learned the hard way

    Thank you thank you for posting this. I admire the route you took. Our daughter seemed to grasp things but her first period, 2 years ago, she just freaked out over the blood. It was horrible. She was terrified and nothing we did or said could address her concern that she was bleeding to death. We had already discussed birth control with our pediatrician. Once this happened we opted to go with the depo-provera shot. It stops her period. It took a few months to get it stopped completely but it was worth it. Also, after seeing the sexual assault numbers, we also agreed to the Guardicil (probably spelled that wrong) vaccination. We are glad we did. Just last month our daughter was raped by a fellow classmate. The sexual assault nurse at the ER said between the depo and the vaccination we had probably prevented a number of other issues. Not every special needs child needs this but do your homework. I have had a number of people tell me I was a bad mother for going this route. But thank God I followed my instincts and did not listen to those other folks.

    • Valerie Strohl

      Thank you for sharing your story. I am so sorry this happened to your daughter and am thankful she was OK. 

      You bring up something I really never thought about and that is the Guardicil Vaccine. I will have to think about this route also.Finally, we all are trying to do our best with our kids. There is no “one way” because we are all different. You obviously were not a bad mother because you safeguarded your daughter due to an extreme situation.  I’m glad you followed your instincts too.

    • Nicholedunlap1114

      so sorry that happened to your daughter. mine is only 6 1/2 right now but i have always figured the depo shot would be a good way to go, and was very happy to hear this worked for you. thx for sharing

    • Beth

      I am so sorry for your daughter having had this happen to her. I truly hope that she will be able to heal from this. As a special needs mom, it is such a fear of mine. I hope not to get to personal or offensive, but have to know for the sake of other special needs children, how did this happen at school? And was this a general education student or another special needs student? My little girl starts middle school in a year and I am already scared for this bigger school and the older kids. BTW, I do not think that you are a bad mom, this is the route that me and her endocrinologist have already decided to take once the time is a little nearer (estimating about a year) and we will be taking this action before she even ever has a period. 

  • Ajones_170

    I have been working with the high school and post secondary population of special needs kiddos for several years and I have seen social stories be very helpful for teaching girls about menstruation. I feel like this and masterbation are issues we never prepare for until it’s a huge problem. Proactive preventative mindset is the best! We just need to be real and honest about the needs as well as the reality of someone’s needs.

    • Valerie Strohl

      Great Advise! 

  • Pingback: Worth Repeating: When your Special Needs Daughter Gets her Period

  • Michel@BabyWeightMyFatAss

    This is definitely one of my greatest worries so thank you for posting. My daughter is 4 and not potty trained so this is my great fear of dealing with BOTH at 13. Thank you again for posting. 

    • Valerie Strohl

      Your welcome. We are all in the same boat – yes? One thing I will say, it is never quite as bad as what you think it will be. Hope that brings you some comfort.

  • parkerrobin

    I am a professional and work with many girls on the autism spectrum. We have a mom who started a ‘period’ training program.  She has helped many families in our area with her program.  When her daughter was young- maybe 6-7 years old, she started preparing her. We wrote a modified social story and each month she would wear a pad and bra (first for a few minutes– all the way to overnight).  She practiced for 4 years and got her period early when she was 10 but knew exactly what to do. Now they track on the calendar and the young woman has been taught to request warm compresses, aspirin, and other ‘period’ remedies all with her visual supports and AAC device. This young woman has had sensory challenges so the practice really helped.  I have learned  so much from this mom and I think one of the most important things is that to always prepare for what you want to happen in 3-5 years. 

    • Valerie Strohl

      Wow! Great information. 

  • parkerrobin

    And I meant to say awesome post with great suggestions!

    • Valerie Strohl

      Thanks :)

  • RaiseExpectations

    Clearly this is a great topic for our girls.  One thing we did with both of our daughters, one typical and one with DS, was to read the American Girl book the Care and Keeping of You.  I do not want this to be a commercial but it is very clear, simple way to bring the information up.  They also have books about friendship, standing up for your self…  Non of it is targeted at the special needs issue, but still on target.

    • Valerie Strohl

      Great book. We used it too. You can even find it at CVS.

  • Evebrasher

    Thank you for your frank discussion about a very difficult subject. I have a daughter on the ASD spectrum, and I’ve had this very conversation with a wonderful OB who recommended that when she starts her period, he is willing to give her a general anesthetic and give her a Mirena implant (an IUD with low dose progesterone that lasts up to 10 years). The Mirena implant very often ceases menstruation altogether, and does not harm her uterus, and can be removed if necessary. I had even discussed endometrial ablation, which essentially cauterizes the lining of the uterus so neither menses nor pregnancy occur, but her uterus needs to be larger to perform that.

    • Valerie Strohl

      Great ideas.  I love to hear about the endometrial ablation – never thought of that one.  Still have the ovaries working!

      • Evebrasher

        I mentioned ablation because it is used often to end dysfunctional bleeding in women who don’t want any more children. I myself had one, had hardly any discomfort afterwards, and have not had one drop of menses since. The OB said he’d do that, but she’s too immature to be able to do it with predictable results. He is on the hospital ethics committee, and said that it is not morally wrong to “sterilize” her in this way, especially since she will never have the desire to have a child nor would she ever be even marginally capable of taking care of one. It is a mercy, if you ask me. I think it might be hard to find an OB willing to do it at casual conversation, but every reproductive age female needs a GYN, and you’ll need to find one that your daughter can be comfortable with eventually. An implant such as Implanon (progesterone matchsticks) might also work, but she might dig at them, and there still is spotting often.

        • Arkeefer

          Please do keep in mind that even after ablation, a woman can become pregnant, or at least a fertilized egg can implant on the uterine wall. Most women who have an endometrial ablation will still need to use another form of birth control to prevent pregnancy, which would be extremely dangerous as there is no longer enough uterine lining building up to support proper implantation and development.

          I had an ablation at age 32 for dysfunctional uterine bleeding, and although it did improve my life a great deal, it did not in my case completely end my periods. Agreed, though, that every woman of reproductive age, and both before and after that window of time, should have a trusted, smart and caring GYN in her life.

    • Guest

       The IUD only lasts for 5 years, but would still help.  It can cause break through bleeding for the first 3 to 6 months and does not guarantee that menses will stop.  Just thought I would clarify.

    • Beth

      I have an IUD and was informed by one of the opt ob / gyns in the country that the reason they are marketed to moms is that the uterus prior to the stretching of pregnancy is “too strong” and will not stretch in the same way, therefore making the chances of rupturing the wall of the uterus more likely. This can lead to a great many more issues. I even have a friend that had a miscarriage after three and a half months that was denied an iud. I would do my own research on the subject before giving it to a special needs child. Also, the “gross” upkeep of it is that you have to physically check about once a month to be sure that it is still in place. This involves using your fingers to feel for the strings that come down through the cervix and you may not be able to rely on your daughters ability to do so. Please please talk to more than one doctor and do your own research. Even call Mirena yourself and speak to someone within the company about the risks of this on a person that has not been pregnant. 

  • Hunny30121

    Helen

    My daughter is now 24 and is on the autism spectrum and getting her period in the summer is very difficult for her.  She has been on seasonale for the past 6 years and gets her period every 3 months.  Not being able to swim at camp caused a lot of problems and now she is a very happy camper and we are happy because we do not have all the tears and PMS every month.  I would recommend talking to your doctor about this.   

  • GundulaME

    My daughter had severe medical issues throughout her whole childhood and it terrified me to think of her reaction to “blood” because she was not understanding any explanations or differences. Her first signs started when she was 10 but thank heavens the real periods waited until she was 13. 
    In spite of all her issues she is handling them amazingly well.
    She complains “again???” and “stop, now!” but I would not have thought that she can handle them as well as she is managing.
    Surprises again and again!!!

    She is on the pill now since she turned 15 because her periods were becoming very irregular and heavy. The pill is not helping as much as it should but at least is giving some relief.

    • Valerie Strohl

      Thanks for sharing. I like how our kids say what every other girl out there is thinking. 

  • Kerith

    Thank you so much for sharing!  Although my daughter is only 10 1/2 months old, as soon as I found out I was having a girl I started worrying about that day!  When she was born and we found out she has DS, I started worrying even more.  So thank you for bringing up all these wonderful “tips” for mine and my daughter’s future. 
    I would like to chime in on some of the birth controls talked about too. Before my husband and I got pregnant I was on the Depo-Provera shot, every three months, it was great.  I was on it maybe 7 years and let me just throw some warnings out there for Mother’s that are thinking about this route for your SN daughter.  (Bare in mind every person is different and responds to medicine different.)  It took me almost a whole year before my period stopped completely and the last two years I was on it I started with break through bleeding, never knowing when it was coming, to full periods again like clock work before my husband and I decided it was time to start our family.  So, when schedules are important in our SN child’s life, starting to bleed one day out of the blue and never knowing when it will happen again could be very bad for her.  Also, after having her we decided on the Mirena, as our BC.  Almost a year later I still get my period and it is not on a schedule and more than once it has lasted longer than a week.  So food for thought for those Mom’s that have never tried those forms of BC themselves.  Where for a typical woman they could be and are some amazing breakthrough forms of BC, for our SN daughters they could cause more anxiety than anticipated.

    • Valerie Strohl

      Thanks for sharing Kerith and congratulations on your new baby girl.  I appreciate your sharing about some new forms of birth control; it will be helpful to the parents. 

  • Winton

    My daughter who has Down Syndrome just turned 6 and I worry about sexual abuse and puberty as she gets older. I have read posts which write about the fear of blood by the Special Needs child. I was wondering if any Moms have shown their daughters their own blood on a pad (perhaps while still wearing it, pulled down, while sitting on the potty?) to show that it’s ok to have blood and the daughter will be “just like Mom” so as to reassure her. This form of teaching just occurred to me after reading the different posts – I have always hidden my period from my daughters (ages 5 & 6), but perhaps this might alleviate fears since as parents, we teach by example… Has anyone tried this? Thank you.

  • X_mckay

    Our daughter is ID (intellectual disability) & recently was diagnose as ASD but due to her age (13yrs) it was changed to PDD. In 2011 a week after she turn 12 she started her period. We think she started @ school and sadly the ILC teacher never said anything but we notice it when she came home in changed clothes. We prep our daughter via the American Girl’s book “All about you” about her period & body changes, but I would make parts of it more simple for her understanding. She did great, but in the summer of that year she experience two periods in one month it normal but with her she was having to change her pads every 20-30 minutes even using the overnight pads! So our doctor suggest we place her on birth control to regulate her periods. During the first year young girls can experience very heavy periods as the body adjust. Then once she started middle school, we notice she was having issues adjusting to new school, no recess, no circle time, & friends she new from past grades were place in different class & she was in a class by herself. The school she goes is very low in test scores & gangs. Typical for middle school Am sure! So the doctor suggested maybe the hormones and middle school was a lot for her so we had where she have skipped periods. So far it’s help but we notice a lot of weight gain. So the doctor is switching her pill to a less progesterone. She glad not to have a period has she used to get sweat rashes between her upper thighs whenever she had her period & the pad would irritated it.

  • Qwikmera

    Hi there, thank you for all the wonderful tips and stories you lovely ladies have given. Much appreciated. I am a 27 year old mother of 5 beautiful girls. My eldest who is 9 years old and my youngest who is 2 years old have downs syndrome. I am finding it really hard to try and prepare myself for the day when my daughters do get their periods as I am finding it very difficult to teach my 9 year old with her hygiene now. As she has bowel problems and is hard work to try and keep her clean. I also have not heard of any of the shots, injections that has been mention. But am prepared to go and ask my doctor, ped for help and answers. So it helps both my daughters and myself along the line. And also gives them an easier life as well. Once again thank you.

  • Tammy

    My daughter is not affected with Down’s syndrome, but is special needs (ASD and PDD).  She is absolutely miserable, miserable, miserable from the day before to the day after her period.  Life is tough enough, but this is out of control.  Her emotions range from crying over everything to flying off the handle and yelling about every little inconvenience she may encounter.  If I could make her period go away safely I would.  :  (