Special needs daughter and puberty

Toto

Is there anyone else out there who has a child with special needs and have gone through the whole puberty thing?

My daughter is 11 and is so close to starting her periods. She has developed breasts and hair. She has severe autism and fragile x syndrome and is developmentally around the age of a 2 year old.

I'm really worried about how we are going to cope with the whole issue of her periods, how to deal with sanitary protection and hygene. She hates clothing at the best of times, we are having a real problem trying to keep her dressed, I can't imagine she is going to put up with towels. I've tried introducing them already before she has started but she just takes it off. I know very well that she will want a plaster because to her, if you are bleeding you need to put a plaster on! We are going to need to buy shares in elastoplast I think.

Her consultant has said that in time she can have medication to stop her periods but to begin with she needs to have enough for us to know that she is regular and there are no physical problems. To be honest, if we can find a way to cope I would rather she didn't have any more medication.

The hormones are causing massive behavioural problems already, she has mood swings at the best of times but the past few months she is having violent outbursts and bursts into tears at the drop of a hat for a week or two a month.

It's all such a minefield and I feel totally out of my depth here. It's difficult enough with my oldest daughter at that time of the month, but at least we can talk through it with her and she understands what's going on.

Can anyone offer any help at all?

UKTigerlily

If you don't get any help here (I'm sure you will) i'll call my Mum because a friend of hers has a Daughter who is now in her 30's but will have had the same problems, i'm not sure what's wrong with her but she's Epileptic & has been starved of oxygen at birth I think? She can walk & talk etc but is very behind as such, so maybe not relevant but I can ask my Mum what her friend did?

I understand about medication but something like Depo is one injection every 11 weeks so not too bad, I have it + alot of other meds, so it's not something you'd need to give her daily like the pill. Of course that will be up to you & your Dr's but is an option. She may well be abit young for it right now?

I hope you get help here soon, people are great here & have been thru all sorts of situations, someone will know!

3onitsway

Oh Toto - I can't help but i'm sure someone will be along who can!

I've got an 11 year old boy with severe autism and learning difficulties. He has no speech and has only been out of nappies for 12 months. I'm absolutely dreading the 'boy' things that are going to happen to him - but hopefully, not for a while yet. He has global developmental delay, so has done most things a lot later than a normal child, so hopefully the teenage hormones will kick in later!!

Are your daughters school any help? Is she at a special school. DS has just started big school (september) and the school nurse seems to be a godsend!! Hopefully she'll be as good when she's needed.

pink_princess

My daughter (without special needs) started hers on boxing day,It is a big thing in their life for any child but in your daughters situation will be much harder .I hope you get the advice you s need and good luck.Within 6 months it will be normality and she won t worry about it.
PP

hilstep2000

My friend has a special needs daughter. She has various problems, and she started last year. She is coping well with it. It's Mum who has the problem, as she is still in Nappies at night, so combined it's difficult.
Mary understands what's happening. She phoned me to tell me she was "now a lady"!
The Doctor has suggested Depo too, and that's what her Mum is going for. Ideally she would like to be able to let her daughter have a hysterectomy, but at 14 they won't consider it, even though she is a very vulnerable adult (human rights?!) and her mother is worried about something happening to her.
Has your daughter got a care worker, or Health visitor? If so ask their advice, as you need help too.
Sorry I can't be more helpful, but hope you get help soon.

hellyboo_2

Hi, I am a GP and the first thing I also thought of was depo too. Is she ok with injections. Why not visit your GP before this starts for some advice and support? I am no expert in this field - you will know alot more about your situation! They may even refer you to a speciallist to discuss options. Do you have a speciallist already for the fragile x? They may be the best to discuss this with as they will have seen this obviously more often than other drs.

cheap_charlie

My daughter is 11 too and is also autistic, but is at the high functioning end of the spectrum.

However I share your worries about periods starting and how she will react and deal with towels.

Like your daughter, mine is another one who will see blood and immediately request a plaster, even although she has had puberty and periods well explained to her.

I am also dealing with the raging hormones and sympathise with you.

I have a book I picked up in Waterstones which does touch on these issues that might be helpful to you - its called "Adolescents on the Austism Spectrum" by Chantal Sicile-Kira. It's available on Amazon if you need to learn more about it. It deals with hygiene and puberty and a wealth of other issues.

It's available at Amazon if you want to learn more...

http://www.amazon.co.uk/Adolescents-Autism-Spectrum-Charlotte-Moore/dp/0091912962/ref=sr_1_6?ie=UTF8&s=books&qid=1231577848&sr=8-6

Toto

Thanks everyone. I have considered depo, my only worry with that is that I had it once and it triggered migraines that would floor me daily. I was almost unable to function for almost 2 years. As a result I can't use any hormonal contraception any more so if we were to go down that route I would rather she had the implant because at least that can be taken out of her body if problems arise.

She does go to a school for children with severe learning disability and I have spoken to them. They are helping, she has had a lesson in puberty and she has been shown towels but it really makes no sense to her. So they are just crossing the bridge when we come to it. I'm sure that's absolutely the only thing we can do but as a mum I still think about it and worry.

As it is we have spent years trying to help her control her impulsive behaviours, she has tried all kinds of medication, she's currently on an anti psychotic drug which helps a little, but the addition of the hormones is making her very hard to control at times, so much so I ca't take her out of the house alone any more, even with 2 adults we only make necessary trips and struggle.

I will pop along and speak to the GP, hopefully he'll be able to help. I was thinking last night it would be useful if there were an adult type pull up product rather than towels, so I will ask.

Thanks again, I feel a bit better this morning. Yesterday's worries were triggered by a meltdown from my oldest daughter who is having a hard time coping with the hormones.

foreign_correspondent

whilst periods are certainly a major consideraton there are also the other aspects of puberty that need to be considered too - like changing body shape, sexual and emotional feelings and looking after yourself appropriately (using sanitary products, keeping clean etc). Suppressing her periods using Depo wll help with that aspect, but it is a wider issue.

Social attitudes change as children go through adolescence, for example, whilst no one is too concerned if a five year old whips her t-shirt off in public, its quite a different matter if its a 14 year old girl. For young men with a learning disability its sadly not that unusual for them to get into trouble for indecent exposure - often because they do not understand what is acceptable and where.

A colleague of mine and his wife had to deal with adolescence with their son, who is severely autistic. The boy's mum is a family planning nurse and became increasingly concerned that young people with learning disabilities were not getting enough help with adolescence and puberty, and that it was very difficult for parents to find ways of dealing with.

As a result she wrote and published an education pack called 'growing and learning'. It is quite expensive but if you are a member of a local group or support organisation, or use a children's centre how about seeing if they would buy it to loan out to parents?

http://www.growingandlearning.co.uk/

Edit - just looked - under the 'books' section there is a 'downloads' bit and one of them is about periods - HTH

Savvy_Sue

Wondered if the National Autistic Society could offer any help and support?