Here the Doctor was telling me she probably would never have a menstrual period. HAH! She started tonite! We all made big praise over her, and got a sanitary napkin on her for all of ten minutes. Then......she went into the bathroom and came out sans napkin.
It's now 2:10 a.m. and 3 napkins later, she's now in bed crying her heart out and hopefully, keeping THIS one on.
Any advice on how to get her to KEEP it on without standing guard over her??? This is the pits!! She's got the mind of a 2 year old and wants nothing to do with that thing. I can't say I blame her either.
Miserably
Peggy

I have a daughter that is 10 and have been thinking a lot about this. She also has sensory issues so I know she will not tolerate a sanitary napkin. I have been wondering if the Depo Provera shot might be a solution for your daughter and for mine. I hope I have a couple more years before I have to face this. I will be watching this board for any ideas that anyone has.

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I have checked about the shot, or any kind of medication that would let Amy shine this part of life on. As far as I'm concerned she doesn't NEED a period. I've even seen news articles saying women don't really need a period if they don't want, that they could take birth control pills non-stop and it doesn't hurt. But so far I'm not getting much help from her doctor. He said she's too young for the shot, patch or anything.
I even asked about getting her fixed because the last thing either Amy or I need is a baby. She's only away from me when she's in school or over at her cousins, but how would I know if something sexual ever happened to her? It's not like she could tell me, she's only very simple words verbal, one word sentences. Maybe I'm over reacting, but I don't think so. Better safe than sorry, don't you think?

I know this may not be a viable solution for everyone, but my neighbor's daughter, who is now 23 and has the mind of a 5 yr. old, started her period (late, she was almost 18!) she searched for a doctor who would do a hysterectomy as it was sure she would never marry and be able to raise children. She found a very sympathetic doctor after a few tries of others who had legal and moral issues, and it was done. Now, no worries about periods, health issues, and another thing to consider. Her mom told me if anything ever happened to them and her daughter was placed in a group home, she wouldn't have the trauma of possibly being abused and getting pregnant.

My son has Down's, but if he were a girl, I would seriously consider her having a hysterectomy too.

Originally posted by Ltb3105:
Her mom told me if anything ever happened to them and her daughter was placed in a group home, she wouldn't have the trauma of possibly being abused and getting pregnant.
B]

Well, sad to say, there is never a guarantee of not being abused, just not getting pregnant.
That she was able to get help for her daughter this way is really great. I don't know if I really would want a hysterectomy for Amy. That would throw her right into menopause. I would want Amy's tubes tied though.

Originally posted by mom8times:
Well, sad to say, there is never a guarantee of not being abused, just not getting pregnant.
That she was able to get help for her daughter this way is really great. I don't know if I really would want a hysterectomy for Amy. That would throw her right into menopause. I would want Amy's tubes tied though.

In reply to the above quote, I don't think she went into menopause or anything or is taking any hormones.

By the way, how do you quote someone and put the reply all in one post? Having a little trouble here..LOL

Originally posted by Ltb3105:
By the way, how do you quote someone and put the reply all in one post? Having a little trouble here..LOL[/B]

Okay, above this letter, when you read it, right above, is Profile, Edit and Quote. To do what you asked, hit the Quote one. Then I just erased all but the part I was answering to. (took me awhile to figure it out myself. http://www.healthboards.com/ubb/idea.gif )

[This message has been edited by mom8times (edited 07-12-2002).]

[This message has been edited by mom8times (edited 07-12-2002).]

Hello, Mom of 8.

I am austic, I too have problems with my period. I know that there is a huge battle to tie a disabled person's tubes, I have fought this battle! Because of the fact I am my own guardian. I have been on birth control since I was 13, because of the irregularity, and because I don't handle it very well.

I have been on pills, depo, and I started the patch. I wouldn't recommend depo, because of the weight gain factor, the pill is nice but she has to remember to take it every day, the shot is every three months, and the patch is the best yet! It is wonderful! You change it every week, but take it off for a week, hence you will get your period, but it hasn't been as bad! But if she skips the plocibos, she won't get her period. If you need any questions answered, just ask! I have been there!
Good luck!
Kayte

Originally posted by Kaytee:
Hello, Mom of 8.

I am austic, I too have problems with my period. I know that there is a huge battle to tie a disabled person's tubes, I have fought this battle! Because of the fact I am my own guardian. I have been on birth control since I was 13, because of the irregularity, and because I don't handle it very well.

I have been on pills, depo, and I started the patch. I wouldn't recommend depo, because of the weight gain factor, the pill is nice but she has to remember to take it every day, the shot is every three months, and the patch is the best yet! It is wonderful! You change it every week, but take it off for a week, hence you will get your period, but it hasn't been as bad! But if she skips the plocibos, she won't get her period. If you need any questions answered, just ask! I have been there!
Good luck!
Kayte

Originally posted by Kaytee:
Hello, Mom of 8.

I am austic, I too have problems with my period. I know that there is a huge battle to tie a disabled person's tubes, I have fought this battle! Because of the fact I am my own guardian. I have been on birth control since I was 13, because of the irregularity, and because I don't handle it very well.

I have been on pills, depo, and I started the patch. I wouldn't recommend depo, because of the weight gain factor, the pill is nice but she has to remember to take it every day, the shot is every three months, and the patch is the best yet! It is wonderful! You change it every week, but take it off for a week, hence you will get your period, but it hasn't been as bad! But if she skips the plocibos, she won't get her period. If you need any questions answered, just ask! I have been there!
Good luck!
Kayte

I'm a little confused, Kayte, but I'd say, if you are your own guardian and are able to type text I'm responding to, you do not sound even close to as mentally handicapped as my Amy is. If you were to have a baby, I believe you would be able to take care of it. Amy has the mental capacity of a 2 year old. This won't change. There is no way she would ever be able to take care of her own infant. That is the only reason I would want her tubes tied without her permission.

Hi there - My wife and I are supportive roomates to a lady with DS. Stacey is 32, has a day job, but is really no more capable or aware, than 4-6 year old. And Stacey has had a hysterectamy. I believe this was done when she was teen, perhaps after her cycles began.

There is no way she could deal with monthly cycles. Wiping her butt is still prone to problems, although she does it. Wet wipes have changed her life.

And to be honest, we're not dealing with any sexual behaviours either. Considering who Stacey is, it seems to have been the best choice for her. - Jeff

hello mom8

just wanted to thank you for your reply it certainly did help me

thank you very much

adamrednck

[There is no way she could deal with monthly cycles. Wiping her butt is still prone to problems, although she does it. Wet wipes have changed her life.
]
I am SO glad to hear butt wiping is not just Amy's problem!! LOL I thank GOD for wet wipes, but still... Amy wants to "do it herself" and she just .......well, females have to be careful the way they wipe, you know? And Amy, she has been known to wipe her butt the WRONG way then look at the results and THEN WIPE HER NOSE with the same tissue!!! OMIGAWWWWWWWD!!! I just have to stay out of the bathroom sometimes because Amy gets a kick out of getting a rise out of me!!
But I thank you for letting me know how things were handled for Stacy. I guess what I need is information from others on how they dealt with their Downs' daughters coming of reproductive age. Is it legally okay to have their tubes tied without their permission? How do most doctors handle this request or handle the request to do away with the menstrual period thru medication, patches or hysterectomy? My doctor is looking at me like I'm over reacting.
All comments are very welcome.
Thanks
Peggy

[QUOTE]OMIGAWWWWWWWD!!!" - That says it all. If you can imagine we've suddenly taken in a 120 pound adult who at first left hand prints ( you know what ) on the all, streaks on the towels, ' kibble bits' on the floor.... In wipes her butt SIDE WAYS !!! Arrghhh !!!! My four year old daughter doesn't do this. And if she pees her pants ( we just went through a bladder infection with her ) hangs them up to dry in her closet, or after flooding her bed, tells us " it will dry..." Bang bang bang ( that is my head on the wall )

So, yea wipes changed most of that, but I've been a little shocked at a 32 year old who's like this. A lot has to do with that she doesn't 'get it'. She doesn't really know what the problem is. She's just mimes back what you want to hear sometimes. She does ask for a bath sometimes and such to clean up. And does want to be independant - and we're not going to wipe her butt.

I made up a little cartoon strip showing a teddy bear on the toilet, then an arrow pointing to the toilet paper, then wipes, then everything into the toilet. The next line goes through cleaning her hands with the wipes ( don't love those hand prints on the underwear....) then into the garbage can ( up to 8 flushes at a time, 2 plugged toilets one night ) then the bear pulls up her undies and then flushes the toilet ONCE. And it's worked beautifully. She even does the little wave that the first drawing of the bear is doing.

Oh, I feel better now. I searched the web for bathroom help and never found a thing. I figured it was mostly parents who were wiping their kids or there wasn't a problem. Which I didn't believe... Okay I can rest now. - Jeff with his Lysol in hand.

Originally posted by dotenj:

Oh, I feel better now. I searched the web for bathroom help and never found a thing. I figured it was mostly parents who were wiping their kids or there wasn't a problem. Which I didn't believe... Okay I can rest now. - Jeff with his Lysol in hand. [/B]

It does feel good to know it's not just US, doesn't it? http://www.healthboards.com/ubb/biggrin.gif Although knowing now that I'll probably be dealing with this bathroom etiquette problem 19 years from now.............GOOD GRIEF!!! What can I say?I gotta love her!! She's my daughter so it's different for me. We've a bond, Amy and I. And it's not just Scott tissue!
Peggy

CONSISTANCY.......My sister just turned 18 and after reading these posts it made me think back to when she was 12 and my husband, Julie and I were driving home and she stated she POOPED her pants. We got home and went to clean up and it sure wasn't poop.......... We started her using the little liners and then went to the thins. Well I just went into the bathroom to see why she was in there so long and she was changing her pad AGIAN....... She has gotten great about keeping it on......HANG ON THERE IS HOPE. Now she uses a roll of toliet paper to wrap pads and another to wipe. She has been toilet trained since the age of 3, thank goodness. She is a great person and the best sister I could ask for..A REAL TEACHER.....

Originally posted by bigsissy:
HANG ON THERE IS HOPE. Now she uses a roll of toliet paper to wrap pads and another to wipe. She has been toilet trained since the age of 3, thank goodness. She is a great person and the best sister I could ask for..A REAL TEACHER.....[/B]

Thank you so much for sharing! I love reading these stories and hearing what we all go through loving and caring for our special kids/sisters/brothers. I read and get ideas from listening to you all, on different ways to handle things, or new things to try with Amy, and just recognizing in your stories, that many are AMY's stories too. http://www.healthboards.com/ubb/dance.gif
Hugs
Peggy

Just a thought on Depo Provera- I took it three years ago for birth control because my nurse said it didn't have any side effects. She was really, really wrong! I was on my period for nearly 10 months straight and it was heavy 24 hours a day. Plus, it has a tendency to cause horrible mood swings, headaches, stroke and 240 other side effects. I found some info on-line and I highly recommend anyone interested in using Depo, surf the web to see how bad it can be. Really awful and long-term side effects are very common for Depo although they don't advertise it. So if anyone out there is thinking about trying it to stop periods, you may get the opposite. Please don't try this unless you are willing to take a big chance.

I dont have a child with Downs but I do have a 75 yr old mother in law with Alzheimers and Parkinsons that lives with me and has this "poop problem". UGH! She doesnt want to wipe and doesnt want to wash her hands after going (which are usually covered in you-know-what)! My husband and I basically have to watch her each and every time and wet wipes ARE a God send! (TP just "sticks around" LOL! Sorry for the PUN!) She is in a WONDERFUL adult daycare during the day while we work so that is a break from the bathroom catastrophes! You are all in my prayers!

Hi, I'm new to this board, but have been following this thread with interest. This is going to be long, so please forgive me. My sister, Jo, who has Down's, is now 52. She has lived with my us (me, my husband and 5 children- all grown now)) for almost 30 years, since our mother died. She has had periods, gone through menopause and had her own unique set of bathroom problems over the years. It has not always been easy, and there have been many challenges (a.k.a. problems to the more pessimistic), but we have all survived relatively intact.
What I have learned, over the years, is that Jo is a person with a disability- but she is a "person" first, and our first priority was to treat her as a person, to let her develop to her full potential despite the fact that for years she was, for all practical purposes, non-verbal, held back, and treated as a child of 5. My mother wanted to protect her from everything- she did everything for her, Jo was told what to do, when to do it-- and then in the end,it was mostly done for her. She didn't need to speak- she could point, and was given what she pointed to. Despite all this coddling, she was frustrated and often became unmanageable.
When Jo came to live with us, she was expected to carry her share of the load of a large household- which she did, and still does. She learned to take care of her bathroom needs ( not without problems), choose her own clothes ( not always what I would have chosen- but I learned that if her choices were limited, we could both be happy). She learned to set the table, make her bed, etc., put away groceries, and she no longer needed the tranquilizers that had once been prescribed for her. Each task was a struggle- but the accomplishment was a reward- for her and for us. She has been participating in an adult program at the local ARC for many years now- she has learned new skills, her speech has improved to the point that many people can understand her, and the delight she has in going to the bank to cash her little check 9after tax deductions) for the work she does at the Workshop is a sight to behold- she loves going to the dollar store afterwards.
I know that my mother wanted to protect Jo from the evils that might befall her in the world outside- and I can't fault her, or any other parent, for that. But I realize, too, that I couldn't guarantee that my own children, without disabilities, could always be protected. I had to let them develop to their full potential as human beings- as "persons"- to take risks, to get hurt, to grow. And I owed that to Jo. She is a person- a difficult one at times (as I am), and her sexuality is part of that personality- humans are sexual beings- and if I had any doubt of that, it was dispelled when I discovered that Jo masturbated.I didn't feel I had the right to subject her to surgery, and decided we would just have to be as vigilant as we could that she was not put in positions or situations that made her vulnerable. But she DID learn- to say no, to let us know when someone had mistreated her, to handle her monthly periods, to bathe herself, wash her hair, etc. She has grown- beyond what anybody imagined. She lets us know when someone has bothered her, or when she is upset- and we listen and act, when appropriate.Now- she has become very particular about making sure that her clothes match- and that she cuts her sandwich for the lunchbox just right, and that she cleans the toilet seat (which we were replacing every couple of months because the finish got worn off with scrubbing).It's taken many years- but we've hung in there, and we've all grown. Jo had helped us to be more patient and compassionate than we ever dreamed we were capable of being- and we have learned that Jo is not a mentally retarded person, she is a person who happens to be mentally retarded. There is a difference.




[This message has been edited by gkbs (edited 10-24-2002).]

Originally posted by mom8times:
Here the Doctor was telling me she probably would never have a menstrual period. HAH! She started tonite! We all made big praise over her, and got a sanitary napkin on her for all of ten minutes. Then......she went into the bathroom and came out sans napkin.
It's now 2:10 a.m. and 3 napkins later, she's now in bed crying her heart out and hopefully, keeping THIS one on.
Any advice on how to get her to KEEP it on without standing guard over her??? This is the pits!! She's got the mind of a 2 year old and wants nothing to do with that thing. I can't say I blame her either.
Miserably
Peggy

My daugher is 20 years old and after years of trying every product have found that "DEPENDS" work great. She likes the ones that you just slip on like underwear. You can also fine them in off brand names that work just as good. It makes her feel very independent.


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