Hi from mum of 13 yr old girl recently diagnosed

Hi everyone, my daughter started with epilepsy when she was 9 and her seizures are well controlled. She has been at secondary school for just 8 months now. My daughter has never had any real close friends and cried a lot at primary school as she was always getting picked on, constantly!. I thought that things would change when she got to secondary school but they havn't. She is highly intelligent but she is lacking in social skills. She doesn't really understand jokes and takes things literally all the time. She has always come out with silly staements but i suppose i just got used to her being like that until a friend of mine mentioned Aspergers and when i read up on it everything made sense to me. I took sodium valproate when i was carrying her for my epilepsy. It took her a long time to walk. She had poor co-ordination. I think we tied her shoe laces until she was 8. She is tired all the time. She is always telling the teachers on her school friends that they have done this or done that and then they just don't warm to her, but in her eyes they are being mean, she doesn't tell the difference with kids being kids if you know what i mean. She talks in a very monotone voice, is totally unorganized, just leaves everything lying everywhere but she isn't naughty just in her own world. She looks about 17 and she is only 12. She put an unopened tin of soup in the microwave to cook. The school have decided to refer her for testing and her paediatrician has wrote a letter recommending the school to refer her as she always thought that my daughter seemed a little bit different and when i told her my concerns she could see that that would make sense.

I would be grateful for anyones views or advice

Thank you

Thanks Pumpkin.  It is something I've considered however I wanted to give her body time to get into a regular pattern before we start to mess about with it.  She's also currently taking medication to help with the panic attacks so I thought it best to only do one thing at a time.  Because she's not at school at the moment, we can deal with the issue of needing to use the toilet frequently.

School have been a bit too laid back by it all which I think has led to the current situation.  She started two terms into Y7, I told them what she needed, the previous school told them what she needed (and also told me they didn't think it was the right school for her!) but they just ignored us and threw her in at the deep end to see how she would cope.  I know, at the time, she didn't have her diagnosis but they knew it was likely.  I've just done my letter to the SEN department to ask for a statement.  I can't wait for school to do it because the SENCo has been off since Christmas and I've heard on the grapevine, isn't coming back.  

Hi my daughter is 13 and has just been diagonised with HFA she is struggling with her periods she is quiet happy to wear santuary protection but only certain types she dose not like the ones with wings or the value ones. 

She cannot stand the mess and it is a difficult week. Is your daughter taking any medication? My doctor has recommended the pill I am taking her back this week to have another talk because I think this may be the best option for my daughter.

My daughter is in school and we have caff meetings with around 10 professionals including a family worker, parent partnership, exheadteacher my youngets daughter's TA, our practioner, youth offender worker, school nurse and my daughters head of year the next meeting a statment of educational needs is being discussed. I am hoping this will help. 

I wish you all the best at this difficult time.

Sitting in my garden having a cup of tea thinking about the clothes issues and wondered if you could get some clothes made for your daughter.  A good dress maker can hide seems and tailor fit. 

It can be expensive, but a few key pieces could lead to her becoming more adventurous later on.  She could also choose her own fabrics.

Another option is too see if you can get her interested in dress making.  It may mean that she starts off by watching you, then maybe progressing to making practical easy things, clothes for toys, or items to sell or cushion covers for her room.

I'll keep thinking....

That's a pretty good idea - I can get extra sets of knickers to try it out.  A friend did suggest Tena pants but I bought the wrong size and they felt too nappy like.

Clothes in general are very difficult.  Not only do clothes need to be soft and seam free, they also have to have high necks, long sleeves and not tight round the bottom area!  I'm hoping this is something she'll grow out of in time as its incredibly difficult getting clothes for her.  As she's got the figure of a woman now rather than a child, its even more difficult!

Intenseworld, I'm going to check out that link now, thanks.

I just read your post and wondered if sandwiching the sanitary pad between two pairs of pants may work. It would mean that one pair of pants is damaged, but having a pair of pants close to her skin may make her more comfortable and  not having the pad visible may help. She can also remove the two pants as one and replace with a new set of sandwiched pants.  This way she doesn't have to deal with touching the pad directly. Bit like a pull up, where the whole garment is removed and replaced.

If you try it and it works let me know.

I

PP is Parent Partnership: http://www.parentpartnership.org.uk/find-your-pps

They can attend meetings to do with education with you as support and knowledge, whether it's with the school or the LA etc.  They might also be able to signpost you to other helpful organisations and put you in touch with other parents going through something similar.

I agree about the ignorance around high functioning girls with ASD.  We were lucky that the primary and her first high school were brilliant and gave her all the help she would have had if she'd got the diagnosis earlier but her current school weren't the slightest bit interested in our comments on how she was coping until she completely refused to go to school.  In a way, it has been the best thing she could have done.

Thanks for the info on statements (though I know this is changing soon) as I'd asked someone if emotional behaviour made a difference and they said they'd check and get back to me but I've heard little since the Senco went off sick in January.  The one good thing the school did do was encourage me to apply for dla which I did and has been a godsend.

I've tried crop tops (she will wear one for a short amount of time in the house as long as she doesn't sit down because then it rides up) but she is very intolerant.  I've tried all sorts of sanitary protection.  She doesn't like the thin ones, small ones or ones with wings (I've even cut them off!) but I did have some success with the very basic type last month if only for a few hours.  The problem is, they move as well as feel odd to her.  I'm thinking of trying an old fashioned Dr White's belt next time.

What's a PP?  

Thanks for the links, I'll have a look when she's not hovering!

This is so typical with high-functioning girls with ASC.  It never ceases to amaze me how much ignorance is out there regarding the female presentation.

The trouble with special school, is that there will still be a lot of children with either behavioural problems or traits that may cause loud stimming for instance (grunts, screeches and other noises).

If you can apply for a statement again (and don't be fobbed off - speak to www.ipsea.org.uk and your local Parent Partnership organisation for advice) your daughter can get one for any behavioural or emotional difficulties that prevent her accessing her education.  From what you say she should definitely have one.  Statements are not only about learning difficulties: https://www.gov.uk/children-with-special-educational-needs/overview

On a statement, you can also name an independent school (private) if you can show that no state school in the vicinity can meet her needs.  The above link has a section about private schools.

Also, as your daughter has a disability you can apply for DLA (if you haven't got this already).  She clearly has issues with self-care and needs a lot of support in that way.  Your PP can help you complete the application.

Maybe you could get her crop tops instead of bras as they will be a lot more comfortable.   There are lots of those comfort bra crop tops out there now.  Sanitary protection I presume you mean pads (I wouldn't ask her to try with internal sanitary protection)?  There are very thin pads out there, as she may object to the bulkier types.  This might suit her: http://www.always-info.co.uk/whats-new/always-infinity-sanitary-pads.aspx