Special needs daughter & periods

Wellyboots6

Hope you don't mind OP but I thought this service may be of use to you...

http://www.youngminds.org.uk/for_parents/parent_helpline

They may be able to give advice on where to turn to for some help with getting your daughter to understand and cope with what is happening to her. It would also give you somewhere to offload to as well.

I understand what people are saying about contraception, but I suspect your daughter will also need some support in coming to terms with what is happening to her as she may not be suitable for some types of contraceptives.

I once worked with a young girl with learning disabilities, and she started her periods aged 12. There had been a lot of work done with her in the run up to it however and so she was quite prepared for it, mainly because it meant she was old enough to have a 'grown up' watch and got to choose a new colour for her bedroom!

cathy36

I will reply individualy to the posts above. Thank you to everyone so much for the advice and stratergies in helping my daughter.
The hospital appointment didn't go well last night. Although HE was a lovely man just didn't understand from a womens view, special needs view and womens problems in general. HE was more concerned that she has gone from 58KG to 65.6KG since April and that he wanted her to remain less than 60KG until she is 15. Periods he compared to as a chore that has been done the equivalant in a mans life is 'shaving' and that Peter Pan had to grow up and accept changes. HE would not consider any injection or pills until 16 years of age and recommended to my GP that clotting testing has to be done beforehand. I walked out of there and took her to the cinema to see Nativity II as she didn't have a blooming clue what the heck he was talking about and was so confused it took her mind of it.
I suppose you have to PLOD on as the doctor said 'we aren't peter pan so we have to grow up and move with life' yehhhhhhhh right.............NOT

peachyprice

What a ridiculous, uncaring, ignorant response from HIM.

I think the next step has to be either your local FP clinic if they're willing to help or a gynae referral from your GP.

I bet you could have cried when you walked out of there (((((((((()))))))))

Noctu

cathy36 wrote: »

that Peter Pan had to grow up and accept changes. ... as the doctor said 'we aren't peter pan so we have to grow up and move with life'

A doctor said that to you??? No matter what his view was, there's no reason to speak down to you both like that. Disgusting, I'd be on the phone to PALS!

miss_independent

cathy36 wrote: »

I will reply individualy to the posts above. Thank you to everyone so much for the advice and stratergies in helping my daughter.
The hospital appointment didn't go well last night. Although HE was a lovely man just didn't understand from a womens view, special needs view and womens problems in general. HE was more concerned that she has gone from 58KG to 65.6KG since April and that he wanted her to remain less than 60KG until she is 15. Periods he compared to as a chore that has been done the equivalant in a mans life is 'shaving' and that Peter Pan had to grow up and accept changes. HE would not consider any injection or pills until 16 years of age and recommended to my GP that clotting testing has to be done beforehand. I walked out of there and took her to the cinema to see Nativity II as she didn't have a blooming clue what the heck he was talking about and was so confused it took her mind of it.
I suppose you have to PLOD on as the doctor said 'we aren't peter pan so we have to grow up and move with life' yehhhhhhhh right.............NOT

Absolutely DISGUSTED! What an idiot and a waste of your time. They bunged me on the pill at 12 no problem (something I don't agree with now but yours is a different situation entirely). No blood test or questions asked. Was even told I could take packs continuously without a break. I would write a letter to your GP, explaining the situation in black and white, including what happened at the hospital and ask if can you have a second opinion.

JBD

rev229 wrote: »

My daughter has Autism/severe learning difficlties and epilepsy. She is now 14. She started her periods at 12. very heavy with only a week between the end of one and start of another. Eventually my GP prescribed depo injection. this was only afer i had been refused an appointment at the family planning clinic due to being told it was not a family planning issue! ie special needs child who cannot cope with periods. The GP was great when i spoke to him and agreed that the depo would be ok. However she hates the injections and the nursing team and I get the abuse hurled at us! She also has breakthrough bleeding during the 3 month cycle but very light. Really wish she did not have any periods at all!!

My daughter is also 12, very severely autistic , and this is something I am dreading.
Apparently there is now a hormonal patch that is worn on the skin [similar to nicotine replacement therapy] and this is something I have considered for my daughter when the time comes as she is unable to take pills.
http://www.nhs.uk/conditions/Contraceptive-patch/Pages/Introduction.aspx
Perhaps you may find this helpful.

EllaRose

Hi OP, I have no experience of this and can't offer advice, but I've read the whole thread and feel really moved by it, you have my sympathies and hugs.

I can't believe the response of the doctor - absolutely shocking, insensitive and patronising; a completely fettered view. My friend had a similar experience when she was going through terrible PCOS which made her grow facial hair that had severely affected her self-esteem and made her depressed. She was told at her appointment by HIM that she was complaining for nothing and if she came from a Mediterranean country, she would not moan at all!:shocked: Again, a terrible response.

I really wish all the best to you and your daughter and hope you can find a solution. xx

claire16c

Please make another appt with a different doctor! He sounds like a complete idiot.

hardpressed

Could you ask your GP for a referal to a female gynocologist?

pandora205

Hi OP,
I couldn't read this without commenting as I work with young people with learning difficulties. I think you have had very poor advice and no support so far from the medical profession.

Thinking about the situation, there are two different issues for your daughter:

1. the fear of starting periods. This has been made worse by the poor sex education lesson in primary school as well as her memories of illness, blood etc.
2. lack of knowledge of the practicalities of how to cope.

To address the first the approach would be to try to normalise periods, explaining (showing pictures, etc.) that all girls have them, and it shows they are becoming women. It can be helpful to be able to talk to other girls who have gone through this (perhaps school could help, if there is another girl in the group who has?) It is important to give the message that the blood does not mean that she is injured and going to get worse, go to hospital or die (I know this is obvious to us but not necessarily to a young lady with learning difficulties).

OP - you mentioned that there is already a psychologist involved. I'm sure she will have ways of tackling the anxiety too (possibly relaxation and desensitisation training) that would help.

To address the second issue - the practicalities - as well as discussion, you could try using some of the materials produced for SRE (Sex and Relationships Education) for schools, such as those on this site:
http://www.me-and-us.co.uk/ppg/index.html