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I'm going to make this as short as I can, but apologies if it ends up being long.

Since my DD3 (8) was a baby we have been convinced there was "something wrong" with her and she showed signs of autism from being about 6 months old.  She was seriously ill ater she was born and almost died.  We were told that if she survived she would be severely brain damaged.  She's not severely brain damaged, but she isnt "right" either.  Anyway, over the years she has showed signs of autism in various ways and I have tried unsuccessfully to convince anyone there is a definate problem but she has been having support from the learning mentor at school and the SEN team at school occasionally help her out.  Some of the teachers are great with her, know how far they can go with her before she will lose it (she isnt violent or anything like that, she just cries and cries and refuses to do what they want her to) but others can't handle her, get irritated with her and we had to take her out of school when she was in Y1 because that teacher had a real clash of personalities ith her (and scarily enough another teacher came and told me what was going on and later told me that taking her out of school was the best thing we could have done for Millie because of what was going on - this particular teacher was one of the ones who knew how to handle her and was brilliant with her.  She has also made sure that Millie isnt in the other teachers class next year)

Last week at school they had "moving on day" where they spent the morning in their new class.  We had to go and collect her in the afternoon because she was so distressed and the SEN team couldnt do a thing to calm her down - no one had briefed her new teacher in the art of handling Millie so the change in routine of being in someone elses class and the fact he didnt know what she could be like was like lighting the blue touchpaper and he had to call for help to try and calm her.  Of course that was the final straw for us, it just seems so obvious she is somewhere on the autistic spectrum and we decided to go in and talk to school about her.

However, the learning mentor called us on Thursday afternoon and asked us to go and see her on Monday which we did, armed with our "evidence" that she has a problem.  We were going to ask that the SENCO came in to the meeting as well so were pleased when the LM asked if it would be ok if she attended too.  The LM went through what had happened on Wednesday and Thursday as they had had huge problems with her then as well and had to call the SEN team in to try and help.  She then asked us what our opinion on the whole thing was and I told her we are convinced she has either autisim or aspergers and the look of relief on their faces said it all!  Thats what they were going to tell us and were worried we'd be those parents who say that there's nothing wrong with their child.  They think its more likely to be aspergers.  So, we're now in the process of getting her formally diagnosed.  I know she's not likely to get much help, there's no budget for outside help but I think as long as the school know, most of the staff know how to handle her and they know her behaviour isnt just that she's naughty things should be ok.

We're taking her to the GP on Monday to ask him to refer her to a paediatrician and school have written a letter backing us up with their concerns so hopefully we'll get an appointment soon.  School said there was no point in them referring her to the ed psyc as she would be at the bottom of a long list and because its not afecting her academically she would get pushed down every time another child with more serious problems was added to it so the GP is the best route.

Anyway, can anyone recommend any books that might be useful to us?  Or have any advice coping with it?  I've been so hell bent on getting someone to acknowledge my concerns all these years that I looked at her this evening and thought "you're not what society calls normal, you've got this problem" and wanted to cry.  To me she is perfect, very special after her awful start in life, but to think she will have to live with this makes me so sad.

Lucie

SAHM to B, R, E, M, S, J, A and A

Hi Lucie
Have a good friend at work whose son has asperger's so I'll ask her for a recommendation - there is LOADS of literature out there so it's probably more efficient to be quite discerning before commiting to a particular book.  We had training not long ago - apparently 1 in 20 of us are somewhere on the autistic spectrum.
There's a fiction book you might like called 'The Curious Incident of the Dog in the Night-time' by Mark Haddon, narrated by a teenage boy with asperger's - funny and touching.
hugs to you and Millie, roof, xx

Yes, that book is a real eye-opener, as well as entertaining at the same time. 

Lucie,

It sounds as if your daughter is lucky to have some supportive elements in her school, and of course you as a parent, willing to support her in every way possible.  We had occassion in year 2 to have the word "apsergers" bounced around, as DS1 was struggling to cope with school, or should I say school were struggling to cope with him. It turned out that he simply wasn't being stimulated enough, and once that was addressed he has found things much easier.  However, having a child that does not fit into the norm of school or their age group is a challenge for all concerned. All I am trying to say is at least at home you can meet her needs, and give her the grounding she needs to accept that she is not like everyone else. 

I will start waffling if I don't stop now, but just to wish you and your daughter the best on your journey of discovery of difference.

Hi Lucie

Have you came accross "the vegan family blog" it's a lovely blog. Their oldest son has apergers and it follow's his and his sister's path from leaving main stream school to home ed.

http://byothermeans.co.uk/

Lorna x

Hi

While i have no direct experience with aspergers i completed a pschology degree a couple of years ago and one of my particular interests was autism/aspergers and so i based my dissertation on this, as a result i have some books still which i used then and one in particular 'Autism Spectrum Disorders - The complete Guide' - by Chantal Sicile-Kira. I would be very happy to lend this book to you for as long as you need it if you would like. If you want me to post it then just PM me with your details. I hope you now start to get some support for you and your daughter  smile

Lucy

Hi there

We were looking into this a lot last year and found the following websites useful:

For general info: http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=212

A very positive site, and this guy seems to be the top dog on Aspergers.  Well worth a read.  http://www.tonyattwood.com.au/

Good luck, and it is good that others have picked up on what you know and that help and understanding are on the horizon.  One thing I would say is that if she is diagnosed and needs assistance at school, it's not your concern that there is money in the budget so don't stress about that too much!!

Hope the sites are useful,

Becky
x

Mummy to four little ones

Thanks everyone for the lovely replies and suggestions. 

Lucyf I would love to borrow the book please.  Will PM you.

Becky - sadly I'm a school governor and on the staffing and finance committee so I know how bad the budget is at the moment, there are other more pressing needs than SEN help for my daughter.  But as long as the school can carry on doing what they are doing with her at the moment things should be ok.   smile

Thanks again everyone
Lucie

SAHM to B, R, E, M, S, J, A and A

Hi, my cousin is undiagnosed asperges; his parents, although knowing he wasn't "normal" did not want to face a formal lable being put on him, he is now a very intelligent 30 year old and coping with his problems really well. I don't know if it is common to all asperges, but he realised that something was wrong and being so cleaver he did his own resurch (he was amazing on the computer as a child/ teenager) and worked out how to act "normal", and has held down several jobs, has a moped to get around and is doing really well.
Although his parents did not diagnose him formally, they were very in tune with his needs, for a year or two as a teenager he refused any contact and would hide away in his room, only sending out requests (for food or computer components usually!) by e.mail to his dad- they went allong with this and although not easy they do have a good relationship- they even had a meal out and a trip to the cinema together a few weeks ago and had a great time. I remember, from family visits, when he was 4 or 5 his temper was amazing- turning over living room chairs, etc, and he was obsessed with routines and really couldn't cope with change- so everything was just done very gradually with a lot of advanced warning.
Good luck with it all and hope there is some support for you out there
Gill

Hi Lucie

Don't the school get extra money from somewhere if the child has a statement?  Or do you mean you wouldn't go down the statementing route?

Becky
xx

Mummy to four little ones

[quote author=becky link=topic=1964.msg21526#msg21526 date=1215804550]
Hi Lucie

Don't the school get extra money from somewhere if the child has a statement?  Or do you mean you wouldn't go down the statementing route?

Becky
xx

I dont know about the money to be honest.  There hadnt been any mention of statementing , but if its an option then yes we'd probably take it, especially if it meant she would get a bit of extra help.  You learn something new every day!   smile

Lucie

SAHM to B, R, E, M, S, J, A and A

Hi Lucie,
I have a little girl who has Aspergers syndrome, she's just turned nine and was diagnosed 18 months ago. Like you, I knew from her being very young that there was something different about her, but struggled for a long time before finally getting a diagnosis. Some fantastic books which I would recommend include "The Complete Guide To Asperger's Syndrome" by Tony Attwood, who is a leading authority on ASD, also "Asperger's and Girls" by Temple Grandin and another book by a teenage boy with Asperger's called "Freaks, Geeks and Asperger's Syndrome" by Luke Jackson. I don't know if you ever saw a film called "My Family with Autism" but the film is about Luke's family and is very good, as is the book.
With regard to funding for SEN suppport, my experience has been that once my daughter had received her diagnosis she was placed on the SEN register, not as having a "Statement" but at "School Action Plus" level. This meant that although she did not receive any 1:1 support in school, the school received £500 per year from the local authority towards any additional care or equipment needed, which is standard I believe for all School Action Plus children, certainly in our LEA. We also had termly visits from Autism Outreach and assessment and support both for the school and for us as parents. The school as a whole were more aware of her needs as a result of the diagnosis, and it certainly opened doors for us in terms of access to information. If you look on the NAS website there are courses aimed at parents of children at certain ages, I believe the one which may be most appropriate to you is called the Earlybird or Earlybird Plus course. They are aimed providing parents with coping strategies and teaching the best ways in which to support these special children in achieving their full potential. I wish you all the best on your journey, please feel free to ask me any questions, I would be happy to help. These children are amazing, they see things other children don't see, they feel things other children don't feel. They just need a lot of love, support, understanding and patience.
Bright Blessings,
Kerri

Hi again Lucie
My friend said that 'Martian in the Playground' by Claire Sainsbury is highly recommended for primary sector. Best wishes, roof, xx

Thank you Kerri and Roof.  I've ordered Martian in the playground already so glad its a recommended one.  I've looked at the Tony Attwood books and they look a bit too dry for us at the moment.  Thanks for all the info Kerri about School Action Plus, I'm guessing Millie will be put on that, she's already on School Action.  I hope the school does get some extra money.

Thanks again
Lucie

SAHM to B, R, E, M, S, J, A and A

Hi Lucie,

My ds was referred to a paediatrician at 18 months and then referred on to portage and speech therapy.  Finally he was sent for assessment and diagnosed as having mild aspergers.  At his current school he is on school action plus, but not under the aspergers lable, just language pragmatics.  I can't emphasise enough to you Lucie how lucky you really are that your daughter's school has recognised this problem.  My son's school claim to understand him, treat him like a retard ( he is in the top 8% for his age group for intelligence in the uk) and worse still have tried to blame us for all his behaviour.  I haven't had a meeting regarding his IEP (Individual education plan) for over 2 years and putting it bluntly I wish I'd followed my gut instinct to home ed him because he hasn't really been happy since he walked through the door.  I've basically been accused of having munchaussens by proxy even though he was diagnosed by a top psychiatrist and a clinical psychologist, yet hiis school have been claiming funding for him all the time (even though they claimed they wern't).

There might be times where you will need to fight your daughters corner and I would get your hands on the Special Needs Code of Practice book by ringing the dfes.  It does sound like you're on to a winner with the school though.  Just do not let anyone turn your daughter's behaviours into something negative.  These are amazing children and you are so lucky to have her.  I think it's great that you are into green issues, these children are closer to nature than most children.  They also seem to have an amazing talent for reading your mind and understand others more than people would ever believe.

The Tony Attwood books are good, but to be honest i don't read about "the lable" anymore.  Sure we were keen to at first, but to be honest, I feel that the first few years of my son's childhood has been spoilt by everyones determination to treat him as though he has something wrong with him.  These children are not problems they are amazing.  Bill Gates definitely has traits and look at him.  These children are sensitive souls and the world is a hard place nowadays, no wonder they get so upset.  I am reaading a fascinating book called The Crystal Children: A Guide to the Newest Generation of Psychic and Sensitivem, might be a little far fetched but loving it anyway.  If you do want an assessment doing, I know of a clinical psychologist who has aspergers herself and will assess and diagnose but more importantly will teach you to cherish this difference and cast out the negative views of others.  Pm me if you like and I will give details.

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