Wednesday, December 02, 2020

The dish on disability and periods from moms

Four years ago I stepped WAY out of my comfort zone and opened up a conversation on my Facebook wall about disability and… PERIODS.  Female cycles.  YIKES!  I wanted to do a follow up, a “then and now” since at the time of the original post, I had only 1 teen female with disabilities in my home.  Now… I have THREE!  At the time of my original post, we had a conversation with 190 comments, so, I’m sharing the original post here as well as a summary of comments that were left so that we can continue the conversation! After the words from the experts, our family update on this subject is at the very end.

December 2, 2016: (this will only be linkable if we are friends on Facebook)

Disability parenting means talking about things you do NOT want to talk about sometimes.  This is the case here.  Feel free to skip right on over this post if you are not a parent of a daughter with special needs or medical professional. 

Let’s talk about something that none of us want to talk about (ever) but some of us NEED to talk about.  Female monthly cycles… for our disabled daughters.

This has been a very (very very very very very very) difficult thing for us the last several months, and for my own sanity I have only asked for prayer as we handled it and talked to doctors (just to make an appointment thus far) and attempted to live through it.  I knew if I started writing I would say more than I should, so I asked for prayer and closed my mouth.  Right now, while I do not have a child with her cycle today, I can write about it a little better πŸ™‚.

Let me start with the fine print.  I don’t like to discuss anything on social media that would embarrass my children, however because she has zero understanding and not a care in the world about any of it, and likely never will, I have decided to open up and ask for the sake of knowledge, understanding, education, and whatever else I can gain from other BTDT parents who would like to share all of that above good stuff with me. 

I am traumatized.  My daughter couldn’t care less about any of it.  I hate periods.  Mine, hers, anyone else’s I have to deal with… it just is so gross to me.  I can deal with all the other ‘medical’ stuff.  This is a 24 hour a day mess that takes away all of my daughter’s independence and keeps me literally following her to the bathroom every hour for several days and spending 15 minutes there with her. 

The rest of the time I have to keep an eye on where she is, what she’s sitting on, and keep a timer going to not go too long before dragging her back to the bathroom.  It is imprisoning right now.  For her because of her loss of independence, and for me because I can do NOTHING else, and go nowhere during that time.  Plus there's all the actual clean up that I'm doing every hour which is something I will not give direct imagery on for your sake.

There’s no way for me to deal with this in a public restroom with 10 other children (or ONE other child!  This isn’t truly a ‘large family’ issue).  Something’s got to give.  The crying, and nearly vomiting aren’t healthy (those are my symptoms of dealing with her periods.  She is completely fine with it all πŸ˜‰ ).

We will be seeing the gynocologist on Monday to discuss options for her and I’d like to have a little more knowledge when we go.  I discussed this with him a little over a year ago before either of our oldest daughters started their cycles, so he was aware we would be coming and shared some very basic and general info with me at that time, however now’s the real deal. That was our "let's make a plan".  Now, well,  we’re sinking here.

I think this is an area where there’s a lot of silence, and not a whole lot of information.  I’m sure I’m not the only one sinking, and I’m also sure there are many of you who have gone before us and sunk and somehow figured it all out and gone on with life… πŸ™‚  I know it will be 'worked out'.  I hope and pray that's true, anyway...


The response from who *I* consider to be the experts!! (aka, moms of girls! These are from the comments of the original post. Names have all been omitted)

I gave some more information: We have been preparing, but that said, I was still completely unprepared. It has been worse than anything I had ever imagined it could be, and not only that, we had 4 or so ok ones to start which gave this false sense of "its gonna be ok" Then it has been two cycles of horrible horrible horrible, for 8 days and 3.5 between starts. Horrible. If someone told me what I would experience I'd have said- it can't be THAT bad. But it is.

One response to the use of pads: “Adhesive from pads + pubic hair = horrible experience....”

Many suggested depends (we were using a similar underwear type of diaper at the time), Thinx or other varieties of “period panties.”  Here was my reply at the time: “We have an issue with her removing a pad and diaper with her hand straight over the part that is dirty-- and squeezing it. I'm not sure this would have any more favorable results for us in that department with poor fine motor skills.”  Another mom said this: “We talked about a couple of resolutions and I've made an appointment but in the meantime, let me just say that Thinx underwear have made an extremely difficult and unpleasant time a little more bearable. Her issue is that if she doesn't have to wear protection she doesn't have her period. So she sneaks away and takes the pad out. They look like regular underwear and no pad is needed so for now, our issue is resolved.”  Another mom offered this: “We have Thinx, and they are no better than what you are dealing with when changing a pull-up. The difference is Thinx cannot handle HEAVY flow. (I have a daughter with heavy flow, and they can't handle it!)”

Several left comments like the following: “I know I've read many things on this (a while ago)...some controversial. From hormonal options (BCPs, Depo shots, etc) to implants/IUDs, to hysterectomies... I'm not sure where we will end up. My daughter is tough. On a good day. Soooo much trauma in her history.  I just can't imagine this will go well. At all…  If I'm being honest, she doesn't even wipe well. I.just.cant.imagine.”

A few brave souls shared their own experiences with other options: “Being on a hormonal supplement (like birth control) used to make my periods farther apart, much lighter and the emotional balance for me was much better too after a few months on. I believe you can get it packaged to make periods a few months apart instead of every month to maintain both health AND sanity.”  Another said “I have had an IUD for 7 years now and not had a period in that's glorious and possible. The shot did not work for me and made me bleed for over a year...every day. So I'm telling you all this TMI to let you know that if one form doesn't work don't be discouraged and try another form.”  And a third: “Fyi..with the impanon(arm) alot of women myslef included bleed for months at a time. I was on it for over a yr with constant bleeding before i removed it. My doc. Said alot of women have that side affect. Constant or gone.”

Another common response was “I’m listening” because their daughter was approaching puberty.  “This made me feel so much better. My daughter is still completely in diapers, no clue she's going or has gone. She will go on the stool then stand up and pee her way back to her room. I felt like she was the only one not trained!!! (My other child is completely trained with the exception of night time). I dread my daughter starting her period, it freaks me out, with my luck I will just get her trained and then we will have that!”  I could definitely relate!  “I have 3 trained and 3 not. One is 13 and doesn't have any idea. Another is 10 and has so many other issues, toileting is the last of our worries. The third is almost 9 and I think he will train soon. Every kid is so different.”

An adult friend with disabilities offered some personal advice: “It's more painful for us with physical disabilities and a little more complicated as far as 'supplies'. Birth control is a great idea. I was on it at her age just to regulate my cycle.”

A few moms looked at this topic from a different angle- that of fertility: “Some will disagree with our approach but we have our daughter on birth control pills that limit her period to 1-2 very light days. She simply cannot handle a full blown period. And as sad as this is to say, she is in public school and not very boy who is nice to her has good intentions. She needs protection from boys who would convince her to let them abuse her and possibly get her pregnant.”  Another chimed in, “This has always been one of my big discussion points. We are not with our girls 24/7, and cannot trust that everyone around them have good intentions. A friend of mine used to do foster care and one of her foster children was born to a 22 yo mom who has Ds.”

And of course, I don’t have the only opinion on female cycles, so a few shared their differing perspectives, which I appreciate! “I've got three now that have periods. But it does not bother me nearly as much as it bothers you.”  They went on to say “All three girls are semi independent with it. One bleeds much more heavily than the other two, and wears a pull up diaper for a couple of days, but that's it.  Thinking of a bidet attachment for the toilet? I'm considering.”  Someone else shared: “I can't speak as the Mom of a special needs kid, so on that front I'm not super helpful. I can say that while you may be grossed out its a completely natural and normal process you, and her, body go through. People don't talk about it enough so it's become some sort of taboo gross thing, when it shouldn't be that way. From your perspective I certainly understand the dread and discomfort having to navigate that every month for someone who isn't able to deal with it independently. From an outside perspective, and this would have to be both a personal choice based on your personal beliefs and what's best for her per her doctor.”

Another option described was ablation:  “I'm definitely interested in hearing more about the ablation option. What would the negatives be? (I didn't have one, so I don't know a lot about it.)”  A personal perspective was shared: “I personally had an ablation done for myself due to heavy periods (as I approach menopause) -- it's fantastic, but I still have a little bleeding maybe about every 3 months for a handful of days. I'm guessing it's because I had some cysts and such that it had to go around, but it's not guaranteed to completely eliminate the period. In having it, you have to have permanent birth control as well - I had my tubes tied at the same time. My OB would not do it until we could guarantee that I would never get pregnant again.”  Someone else shared “A peds gyn told me that ablation isn't a good option at such a young age since the uterine lining can supposedly grow back after a few years.”  Another perspective: “Our doctor advises very strongly against ablation for kids with developmental disabilities, because they may not be as capable of telling you when they are having symptoms of potential cancer. And ablation can hide the cancer. Just a thought”

One mom shared a perspective about a conversation with her daughter with developmental disability: “we had a conversation about ablation, and the doctor told me that he felt very strongly that doing it chemically was much safer and it was not a risk he was willing to take. We really do need to see an OB/GYN though and get a more permanent plan because my daughter really wants to just be done with it all together. She also wants to have babies someday and although that is very unlikely, she would never agree to anything that would permanently take that option away at this time. She handles it pretty well but she does hate it.”

Another aspect of personal care was school!  “We are facing that with my daughter right now. We are still discussing with her doctors of what to do. I also have to add the girls go to public school and do not feel like their teachers should have to deal with this either. I'm really torn.”  A mom shared their response to the school issue: “We use the above mentioned pill and have three periods...... plan is either thanksgiving or christmas break/ spring break/ and a week in summer when it is supposed to rain the whole week.”

Other resources were given:  “There is a closed group on FB: Down syndrome and Puberty. It's not very active now, but maybe some post might help you. With your other daughters (and sons), I recommend the book "Teaching Children with Down Syndrome about Their Bodies, Boundaries, and Sexuality, A Guide for Parents and Professionals."”

A birth control shot was discussed, and a common theme in replies was this: “We didn't do the shot bc if there are bad results, you're stuck for 90 days. Pills are easier to change and adjust since it's a once a day dosage.”

Speaking of a regular pill, several stated it helped or didn’t help, and what type they used.  Here as one of the more unique replies but I’m sure there are more with this same outlook! “We have both our girls on "the pill"- from 7+ days of heavy to 2-3 light, and it has made a world of difference for cramps.. we choose not to go drastic because God made our bodies to function that way and who really knows if procreation is the ONLY reason it does.. was just our thoughts.”  A response to this (simply another perspective): “I'm not a fan of chemical birth control so in addition to not being familiar with it since I do not use it, I questioned where I stood as far as the moral dilemma I have myself with taking it (I understand that not everyone sees this as an issue, but it's something I was thinking through). I basically decided that it is not being used AS birth control- because sex is required to form a baby and there's none of that ever happening for either of my daughters so the aspects of hormonal birth control that I don't like are not something that even comes into play for either of my daughters.”

The elephant in the room that many wondered about was brought up by a few: “A cousin of mine struggled with very very heavy periods. She has down syndrome and severe autism. She wasn't "bothered" per day by her period but she wasn't able to care for herself. My aunt tried birth control in both pill and shot form and nothing seemed to cease her cycles, or even slow them down any. After a couple of years and many many doctors they made the tough choice to have a partial hysterectomy. She kept her ovaries so she didn't go into hormonal menopause but lost her uterus.”  Another friend shared: “In situations like this I personally see no problem with her having a partial hysterectomy and having her uterus removed. Some people may think I'm horrible to say that. However you have to look at what she's suffering through as well. Just removing the uterus will cause the bleeding to stop because there will be nothing to bleed. Her ovaries still intact will cause her to go through her regular hormonal cycles and be healthier for her body.”  Many others said this is the direction they would choose for their daughters, if given the choice.  “We aren't there yet...but she's 12 1/2 so I'm hoping for a hysterectomy. I don't see why she needs a uterus, she's so severely delayed it isn't likely that she will ever surpass 3 years mentally, so she will never be able to consent sexually or even understand all of that. She can't wipe herself at almost 1e and only goes through the motions of washing hands not grasping fully cleaning them let alone cleansing her feminine region so a period sounds like literal hell. If the doctor won't do a partial hysterectomy hopefully he will do an ablation. My daughter would freak out and think she's dying if she had that much blood on her. I would think that would be more trauma than losing her uterus which she doesn't know exists, will not ever care about, and at a 18 month-3 year old cognition, I hope to goodness never uses.” “Partial hysterectomy would be what I would choose, If I had a daughter. No more messes and she gets to keep her ovaries/hormones.”  “I am so thankful you have brought this subject out here for so many to discuss. I have learned a lot just from reading the responses here and appreciate all the input. With that said, I have three girls with Ds that I am facing this very soon with and my decision is that I do not want any of them having a period at all so I would choose the hysterectomy. Now of course I realize that I need to get approval for this but this is the part that just chaps my behind. These are my daughters for whom I make all the decisions for and am held legally and morally responsible for in all aspects of her life except when some bureaucrat or doctor says otherwise?? Anyways, thank you to all for sharing your experiences and thoughts.”

The natural manager mom shared her experience: “I'm sorry you're going through this Meredith and I have no helpful words for you. My girls are both 15 and started a few years ago. They both had a hard time at first, and one chose to wear pull ups during her period each month. Now they both change their own pads-- so frequently that they each go through an entire pack each month. They do get moody and one gets crampy which is helped by advil, and we have no plans to use birth control.”  “My daughter is 16, had her period for at least 3 years now. Every once in a while we have a catastrophe, but she has learned how to take care of it. She is barely verbal, but between her OT, her hab worker and I we have come up with great solutions. It took a little bit of time. But she is independent with it. Probably the biggest problem is remembering to buy supplies. I forget.”  “My husband and I used to run group homes for Developmentally delayed adults. We had a variety of different disabilities, with a huge range of cognitive function, if they were potty trained, then they also dealt with their periods independently.”

And of course, there’s always these little jibes! LOL! “One more reason I only adopt boys!” Andall the girl moms replied: “Boys are gonna give us sexuality issues from a different direction! Lol”

And, those who aren’t in it, but read it to just be able to relate to people and understand: “Girl...I cannot even begin to imagine what you're going through. That is something I had never thought about u having to deal with.”

I’ll close out with the loving comments from those who just wanted to say thanks to ALL for their open dialog: “I just want to say "thank you" for posting this. You know that we're not in your shoes but our hearts know that it's a possibility someday. I'm thankful for friends like you who are open and honest. This gives good food for thought and a way to pray for those of you dealing with this currently. ❤ So, thanks!”   “Thank you for posting this. I'm learning a lot as we will be facing this MUCH sooner than I care to think about. Hugs!”  “I appreciate you being willing to talk about this. It's on my mind a lot lately. My daughter is developing but so far (thank God!) no period. Her ped said we had at least a year a few months ago. I'm planning to see how it goes first. She will wash herself in the shower but only after being reminded and I have to remind her to wipe after using the toilet - so, I don't know what it's gonna be like. It's been really helpful to read the ideas and tips in this post. Thanks!”


You thought you made it to the end with that, right?  But, how about NOW?  Now where are we at with things, 4 years later??  We have not one, but three teen girls with disabilities.  I’ll give a quick update!  At nearly 2 years of terrible periods and multiple pill options tried, our oldest ended up with 40+ days of bleeding and the doctor finally said he was done if I was done, and it was considered medically necessary to do a partial hysterectomy.  We had been literally captive for the entire Christmas and New Year’s holidays and momma was losing my mind!  It took many months to get the surgery scheduled, but in the end she had her uterus removed!  I will add that we have had a recent instance with a mild period! Even with no uterus?? Yes…  Scary, isn’t it?? Well, the gynocologist had a few ideas for what caused it, and if it happens again we will have to see what is definitely going on there!  For my next two girls, so far we are at very light and manageable cycles.  With covid, the appointment I had scheduled in May ended up being canceled, and really we’ve managed ok.  I’m hoping to use the pill to regulate their cycles so we have some predictability.  Our biggest issue is that our toilet trained daughter sometimes just ignores the blood and goes on with life. Our other daughter is in a pull up all the time, so it is just a matter of us following her to the restroom to remove a soiled diaper without making a mess with it, then cleaning her up well at the end of her time in the restroom.

Life is never boring around here!  Please leave me an update or your own (kindly worded :D ) thoughts on the topic if you’d like!

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