Special needs daughter & periods

cathy36

My 12 year old special needs daughter has just started her periods and I need help!
She attends main stream schooling but is in the nurturing group with another 4 girls. Although she has been taught about periods, babies etc she clicks off as anything medically freaks her out as doctors and hospitals have always been part of her life. Her doctors are fantastic and know her ways so when she started her period for the first time the other evening the first thing she wanted(was screaming)was to go and see her doctor and to have an injection to 'stop' them. I explained over the telephone to her doctor and she was only too pleased to see her that evening and sat with her explaining things through. Unfortunately, when she was told she couldn't have the injection until she was 15 she completely freaked out.
I have to accompany her to the toilet, she wont look at all so I have to change the pad and dispose of it. Where she is heavy it is soaking through her bottoms, so I have had to go out and buy lots of different ones. She is also is incontenent at night so wears a nappy.
Surely there must be something they can give her at the age of 12. Does anyone else have a special needs daughter that has gone through or going through this?

Ruby_woo

Oh Cathy, I have no experience with these things but wanted to send you a hug. Not much use I know but others will be along I'm sure. Xxx

chocdonuty

Possibly the pill? it will at least reduce her periods and I think it may be possible for it to be used at 12 but not sure

kingfisherblue

The Scottish Down's Syndrome Association used to publish a booklet aimed at girls with learning difficulties, to help them understand the basics about periods and how to cope with them. Unfortunately, I can no longer find the link.

You could contact your local special school and ask their nurse for help - they will have a massive amount of experience in helping with everything from acceptance that periods ahve started, to changing pads and maintaining a good hygiene routine.

Visual timetables often help children with special needs. Maybe you could make a chart to help remind your daughter to change her pads. She might respond to a reward (such as a sticker) if she uses the chart. Initially it could be that she gets the pads out of the packet on the first day, then progresses to removing her soiled pad on day two, then on day three she puts her own pad into place (you will need to check that it is correctly positioned).

Practising positioning of pads might be worth a try - just use clean knickers and some pads between periods. This also reminds your daughter that her periods will recur.

It's really hard at first, but your daughter will get used to coping with periods.

Nicki

My DD has severe learning difficulties and is the same age. She hasn't started her periods yet but they are imminent. We took her to a paediatric gynaecologist last month (who knew such things even existed) and were advised that when she does start her periods that she can have a mirena inserted under GA immediately if her pelvis is big enough which will be replaced every 5 years to hopefully switch things off, and if not the pill will be prescribed and if necessary we can get OT help to teach her how to swallow it (as she has never taken medication in tablet form). Her situation is complicated as she also has epilepsy which can be made worse by hormonal fluctuations, but there are certainly options out there for younger girls to switch periods off.

Horrid though it is to think of, our daughters are much more vulnerable than other girls to being exploited, so it is worth thinking of ways to keep them protected from unwanted pregnancy once periods start too

cathy36

Ruby_woo wrote: »

Oh Cathy, I have no experience with these things but wanted to send you a hug. Not much use I know but others will be along I'm sure. Xxx

Hi Ruby woo, thank you. That means a lot. We are day 4 and it is still as bad as what it was on day 1. I am not letting her go through this next month, missing schooling, not going out, leaking bad. It is worse than i thought it would be and totally drained.
Thank you again. xx

cathy36

chocdonuty wrote: »

Possibly the pill? it will at least reduce her periods and I think it may be possible for it to be used at 12 but not sure

Thank you. I wondered if the pill was the route to go down although she is not good at taking medication of any kind. I am going back to the doctors with her tomorrow as school will be missed as she can't change the pad herself.

cathy36

kingfisherblue wrote: »

The Scottish Down's Syndrome Association used to publish a booklet aimed at girls with learning difficulties, to help them understand the basics about periods and how to cope with them. Unfortunately, I can no longer find the link.

You could contact your local special school and ask their nurse for help - they will have a massive amount of experience in helping with everything from acceptance that periods ahve started, to changing pads and maintaining a good hygiene routine.

Visual timetables often help children with special needs. Maybe you could make a chart to help remind your daughter to change her pads. She might respond to a reward (such as a sticker) if she uses the chart. Initially it could be that she gets the pads out of the packet on the first day, then progresses to removing her soiled pad on day two, then on day three she puts her own pad into place (you will need to check that it is correctly positioned).

Practising positioning of pads might be worth a try - just use clean knickers and some pads between periods. This also reminds your daughter that her periods will recur.

It's really hard at first, but your daughter will get used to coping with periods.

Thank you for the suggestions. I am taking her back to the doctors tomorrow as the situation is horrid. She is sooo upset, wont go out, I am trying to encourage her to walk normally, she wont change pad herself as she sits on the throne with her head up in the air and eyes closed, she wore her clothes in the shower this morning, she wont go to school until it's over with. Luckily she is under a pshycologist so am desperate to see her.

cathy36

Nicki wrote: »

My DD has severe learning difficulties and is the same age. She hasn't started her periods yet but they are imminent. We took her to a paediatric gynaecologist last month (who knew such things even existed) and were advised that when she does start her periods that she can have a mirena inserted under GA immediately if her pelvis is big enough which will be replaced every 5 years to hopefully switch things off, and if not the pill will be prescribed and if necessary we can get OT help to teach her how to swallow it (as she has never taken medication in tablet form). Her situation is complicated as she also has epilepsy which can be made worse by hormonal fluctuations, but there are certainly options out there for younger girls to switch periods off.

Horrid though it is to think of, our daughters are much more vulnerable than other girls to being exploited, so it is worth thinking of ways to keep them protected from unwanted pregnancy once periods start too

Thank you. I am going back to the doctors tomorrow as the situation since Thursday has been horrid. I have played it down with her but the fear, anxiety and denial are taking over and it doesn't matter how much I talk, family talk she wont and will not listen. I have to go in the bathroom with her, change it as she sits with her head up and eyes closed. She had a shower this morning and when I went in to check her she had all her clothes on washing her hair. This has really set her back and it's not fair for her to go through this until the age of 15. It's not fair too that she is missing school as she can't go in all day without changing. Ohhhh I was dreading the age when it happened and it's worse than what I orignally thought it would be like. If you hear of any other other suggestions from other parents please can you let me know? I am looking at the pill idea I think. x

Ruby_woo

Hi Cathy
What a dreadful time for you both. I'm sure the dr can do something to help as in theory if she had irregular and heavy periods, this could be on going for two out of every four weeks.

Please see the gp again tomorrow and see what else they can do. Maybe they could perhaps do something like nikki has suggested?

Please keep us posted. Thinking of you.xxxxx

cathy36

Ruby_woo wrote: »

Hi Cathy
What a dreadful time for you both. I'm sure the dr can do something to help as in theory if she had irregular and heavy periods, this could be on going for two out of every four weeks.

Please see the gp again tomorrow and see what else they can do. Maybe they could perhaps do something like nikki has suggested?

Please keep us posted. Thinking of you.xxxxx

Hi Ruby woo, can't wait to get on that phone tomorrow morning and get a appointment. It really has been a horrid weekend for her. She has already worked it out the next time will be Christmas, aghhhhhhhhhhhhhhhhhhhhhhhhhh
I will keep you posted x