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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

Periods and severe autism?

22 replies

BitOfFun · 08/05/2009 20:45

My dd is 8, still in Nappies and has chronic bowel trouble...she actually just threw some poo at me, but that's another story, sigh...Thing is, I'm really starting to worry how I'll manage when she is a bit older- will I still be having to clean her bum when she's hit puberty? How on EARTH will we cope with her periods? What do other parents of severe SN do? I am wondering whether I'll be able to cope

OP posts:

Sandhills · 08/05/2009 21:10

My dd is 7.5 and she is also in nappies, i have also wondered what will happen as she gets older and starts her period. I think it's going to be another one of those things that we just have to get on with. Personally i try not to think about it as i'm still taking one day at a time - just like when she was diagnosed seven years ago! It's the only way i can cope.
Do you think you will be able to try toilet training with your dd in the future?
I don't see it happening anytime soon for my dd.
Sorry i wasn't any help in answering your question, i wanted to share my similar situation.

Original poster

BitOfFun · 08/05/2009 21:13

Bless you for that! I know what you mean about one day at a time too- it is bloody scary to do anything else, isn't it? < head back in the sand emoticon >

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bullet123 · 09/05/2009 13:26

There is a woman on another site who may be able to offer advice as she has an older daughter with severe autism. I will ask her if she can offer any advice.
Sandhill, your dd was very early to be diagnosed at 6 months old.

misscutandstick · 09/05/2009 13:31

Just a quick thought in passing as i dont have any personal experience in this particular area, but how about the contraceptive injection? (names just escaped me for the moment). I know in many people it stops their periods altogether while they are on it. And i think it only has to be given every 6mths. (it could be 3mths, i cant quite remember it was a while since i had it). not sure if thats a help? XXX

Sandhills · 09/05/2009 15:18

bullet123 - my daughter was diagnosed at six months old with West syndrome. That's quite normal for west syndrome

bullet123 · 09/05/2009 15:28

Oh I'm sorry, I jumped to conclusions there .

Original poster

BitOfFun · 09/05/2009 16:44

That would be great- thanks for that!

OP posts:

saintlydamemrsturnip · 09/05/2009 20:38

My friend got some help from a trainee clinical psychologist who devised a program to help her dd understand about periods, and get used to them before she started. It did work well - the trainee spent a lot of time with the family and devised her own individual programme- might be worth asking whether you could access something similar locally.

Original poster

BitOfFun · 09/05/2009 22:30

Thanks for that- I really do appreciate people taking the trouble to reply...I will bring it up at dd's next appointment with the consultant or social worker. She has no language and I've never been able to explain anything to her, so it will be tricky I think!

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vjg13 · 09/05/2009 22:43

My daughter is 11 and has severe learning difficulties, she isn't in nappies but I have no idea how she will manage periods. She starts at a new special school soon and I'm hoping the school nurse will be able to offer some help.

We don't have a paediatrician anymore so I don't really have any other ideas who to ask.

siblingrivalry · 09/05/2009 22:48

BoF, I don't have any experience of autism, but dd1 (8) has SN and I have also been thinking about periods lately. She is very tactile defensive and hygiene has become a big issue in our house - she hates the feeling of water on her skin. She is also petrified of blood.

Good luck, I hope your dd's consultant has some useful ideas.

Original poster

BitOfFun · 09/05/2009 22:50

Cheers guys- fingers crossed for all of us!

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Olihan · 09/05/2009 22:53

BoF, I have friends with a 19yo who has severe GDD - no language, still in nappies, unable to carrty out any personal care herself and she has the contraceptive implant in to stop her periods.

She's only had it recently because she didn't start having periods until relatively late in her teens (17ish, I think) but it's been very helpful in terms of her personal care so far.

Original poster

BitOfFun · 09/05/2009 22:58

That's handy to know, I have no idea about these things!

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vjg13 · 09/05/2009 23:10

Just found and ordered! this book

Original poster

BitOfFun · 09/05/2009 23:19

Brilliant! I'll order that, thankyou!

OP posts:

amber32002 · 10/05/2009 09:13

Thought maybe I could help answer this one a bit if that's ok? Even us HFA/AS people can be rubbish at dealing with them . There's not enough routine to each of the days, so I know that I panic about what to do, when. Took me about 5 yrs and the Pill really really helped

vjg13 · 10/05/2009 11:44

This thread has been really helpful to me and forced me to wake up and realize my 11 year old is about to hit puberty and we need to start preparing her.

Mitchell81 · 10/05/2009 15:16

I have been told that there is a medication that DD can take when she starts.

bullet123 · 12/05/2009 16:54

The person I asked says they haven't any advice themselves, but the NAS may be able to help or would your dd understand a social story explaining what will happen to her?

FioFio · 12/05/2009 17:21

This reply has been deleted

Message withdrawn

2shoes · 12/05/2009 18:21

where do we talk about this iynwim,
I was thinking about this today(dd has cp) I just don't know how she will cope with it all.
It is not something you can go into on the www,

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