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Saneasever

Newbie - rough time...

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Hi everyone. Little bit about where I'm coming from...

 

I've recently spent 3 months in a Children's Hospital - My daughter, A. (nearly 9 years old) had been struggling at school for months, constantly unwell, began burping every day, severe abdo pain... (She also stopped eating for 3 weeks a day after being admitted into hospital.)

 

Drs ruled out 'organic' causes after 2 weeks, then accused me of causing 'fabricated illness'/emotional abuse.

Brought in Social Workers and Child Protection Plan.

Eventually admitted A. to Psych Ward - (we had no choice about this).

Psych Ward knew within 30mins of meeting A. that she had Aspergers, and formally diagnosed her within 10 days.

 

We hadn't a clue that A. was an 'Aspie' - just knew she was a sensitive soul we loved to pieces.

Sadly the Medical Ward and Psychotherapist hadn't a clue either...

 

Needing to move on and look forward now.

Is getting a girl diagnosed always this difficult???

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It saddens me to hear these stories - you are not alone, that's for sure.

 

Hope you can bring some peace to your lives after such a traumatic time. NAS has some good groups for Aspie girls and there's a good few of them on here, so ask away!

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It saddens me to hear these stories - you are not alone, that's for sure.

 

Hope you can bring some peace to your lives after such a traumatic time. NAS has some good groups for Aspie girls and there's a good few of them on here, so ask away!

 

:) Thanks for your email.

 

I'm sure there will be plenty of questions!!!

Edited by Saneasever

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Hi and welcome to the Forum but sorry you have had such a difficult time. >:D<<'> >:D<<'>

 

It is sad but true that some profesionals know very little about AS.

My son Ben spent three years in weekly psychotherapy as did my husband and myself.

I had a recognised history of extreme childhood trauma and was unwell in the first three years of Ben's life.

Psychotherapists were convinced that this was the reason for Ben's difficulties.

After three years of psychotherapy they decided to put Ben forward for a 3di carried out by a colleague to prove that Ben did not have AS.only for the colleague to say that he clearly did have AS.

 

When Ben was discharged by CAMHS his psychotherapist had to admit that even after three years of psychotherapy he still needed ASD outreach due to Social Communication Difficulties.Whilst the psychotherapist who saw my husband and myself never accepted the AS diagnosis even though his colleague psychiatrist in the next office had diagnosed Ben.

 

Ben is now doing well and is very at home with having AS.

I on the other hand still find it difficult at times having spent three years with professionals digging up my history and going through it looking for evidence to link to Ben.

I also spent three years blaming myself for having created Ben's problems .

Edited by Karen A

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:( My 3 months is nothing compared to the 3 years you went through.

 

I, too, suffered things as a child that nobody should have to go through, but kept that all to myself as far as 'professionals' were concerned.

 

Can relate to blaming myself though - everyone else blamed me, and I believed them because although I knew I'd always tried my best, I must have obviously done 'something' wrong.

 

A.S. gets you 'off the hook', but changes nothing about what you've been through.

 

Can't believe people can get it so wrong...

Edited by Saneasever

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.Hi.

 

Just an Edit note Saneaserver.

If you have read the post before I Edited it.I have taken out the previous post of yours which I managed to copy and paste in the two minutes between 1158 and 1200 before you Edited it. I also removed some of my response that was no longer relevant. :)

 

We do have the utmost respect for the psychotherapist who worked with us.

He provided me with the support I should have had at age 9.Ironically I only got the help because it was to support Ben's work.The NHS will not pay for it for adults in their own right.

I also have excellent private support.

 

I also found some wonderful people here three years ago who are very knowlegable and have helped along the way. :notworthy::notworthy::)

 

However it is difficult not to feel cross at times when three years later Ben had AS, having being told that if we worked hard enough he would be cured. :rolleyes:

 

.

http://www.timesonline.co.uk/tol/news/uk/article6993537.ece

 

I thought I would add.

As reported in the article above.It is recognised that cases of children being taken into care have increased forty per cent since the baby P case.A very risk averse culture has been created.

Edited by Karen A

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Me again! I edited the post because I was worried I might be asking a question you didn't want to answer... but I'm glad you did, and I did manage to read your original answer before it was edited. :)

 

Is my board supposed to look this messy all ready? :unsure: I keep duplicating posts when I'm sure I'm not supposed to be. Obvious I'm new to this, isn't it??? :oops:

 

A. spent ages crying this morning as wants to only wear pink clothes at the moment - wasn't a problem prior to hospital. We're finding lots of 'new' problems as her 'Aspie' qualities have ballooned since hospital trauma.

 

What's Ben like? (Ignore if you don't want to answer) :)

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Me again! I edited the post because I was worried I might be asking a question you didn't want to answer... but I'm glad you did, and I did manage to read your original answer before it was edited. :)

 

Is my board supposed to look this messy all ready? :unsure: I keep duplicating posts when I'm sure I'm not supposed to be. Obvious I'm new to this, isn't it??? :oops:

 

A. spent ages crying this morning as wants to only wear pink clothes at the moment - wasn't a problem prior to hospital. We're finding lots of 'new' problems as her 'Aspie' qualities have ballooned since hospital trauma.

 

What's Ben like? (Ignore if you don't want to answer) :)

 

Please don't worry about the mess.I have seen much worse from people who have been around for years. :whistle::whistle::whistle::lol:

 

Ben is unusual even for here. :)

He is 12.He has dyspraxia as well as AS.

He is very intelligent and knows lots of factual information.If he is talking about things that interest him he can be fascinating.

He talks rather like a graduate from one of the top universities.

However he likes things to be very structured and can become very anxious if there are even minor changes.

He gets on very well with adults who understand him and some teachers tend to mother him a bit. :) However he can be a challenge because if teachers do not follow rules or their lesson planning is not up to scratch he can be very direct in telling them...which does not always go down well.

He finds it difficult to get along with his peers at times.He is often told he is a nerd or geek because he is not very good at being cool.He has been bullied a lot because of this.

At one time he was very anxious and angry and could not cope well at school at all.However he is doing loads better now because some excellent teachers have helped a lot since he started at secondary school.

 

He can get very anxious in busy environments but has learned to cope..

 

There are times when we could forget that Ben is Aspie.However it is more obvious when he is stressed.With things at school being unsettled he has gone back to playing with a ball that changes colour when touched.He has also been asking me lots of times what time it is and what we are doing next.He loves to feel the labels on his clothes and knows where they all are.We know when he is worried because he starts to twiddle with labels.

 

The NAS has a very good web site.There are also ''help'' courses for parents of newly diagnosed children.We found them excellent even though I knew a lot of the information.It was good to get to know other parents who were all asking similar questions.

 

Lots of parents notice things soon after diagnosis.This may be because they notice things that they were not aware of before.It might be because the child feels more able to be Aspie.

 

There is a very good thread started a long time ago about ''passive children with ASD'' which is more common in girls.I do not know whether it will be useful for you but will post a link in a minute.

 

http://www.asd-forum.org.uk/forum/index.php?/topic/192-the-passive-childpretending-to-be-normal/page__p__1444__hl__%2Bpassive+%2Bchild+%2Bpretending+%2Bnormal__fromsearch__1#entry1444

 

 

Karen.

Edited by Karen A

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:) Thank you so much for this link - 'pretending to cope' (but now no longer coping).

 

A.'s behaviour (since hospital) now makes more sense.

 

(You've got a very good memory, I'm guessing.)

 

Will use this info. for school - they very kindly endeared themselves to me in Year 3 by saying A. has no problems at school, and that her lack of school attendance was due to my 'emotional problems'. :angry: (I have this info. in writing from Child Protection Plan.) Thankfully, new Head Teacher as of Sept., with ASD knowledge...

 

Am writing to school next week to request copies of A.'s school notes - that way I'll be able to name and shame whoever's responsible.

 

Am also writing to Social Services next week with similar agenda. Had the cheek to call A. 'precocious' when they've never even met her - she's a beautiful little soul and anything but.) Also requesting having our names cleared. Did you know that if you don't, it stays on your record permanently?

 

Also complaining to hospital, and considering legal action - waiting on A.'s notes from hospital to appear first.

 

Even considering writing to the newspapers...

 

Thanks again... :)

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Hopefully I've tidied up how the thread looks.

 

Just wanted to say how 'sane' you sound, if that's not patronising. All credit to you for keeping it all together.

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Also requesting having our names cleared. Did you know that if you don't, it stays on your record permanently?

 

Unfortunately I do having been told about another case in the last few days. :(

I have no idea whether that is coincidence or a sign of the times...who can say.

Karen.

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Hi Saneasever,

 

It sounds like a nightmare and I wish you the best of luck with your battles. I have a girl but she wasn't diagnosed till the age of 15 by which time all the signs were pretty obvious.

 

Welcome to the forum. :)

 

By the way if you click on the big blue "Add Reply" box right at the bottom of the thread (next to Start New Topic), rather than the little "reply" box directly under each post, you'll find that you get an empty box to type in and you won't quote someone else's post when you don't want to. Hope that helps!

 

K x

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:) Thank you for your 'by the way...' (I was hoping somebody would take pity on me and tell me what it was I kept doing wrong). :oops:

 

How's your daughter doing now? :)

 

Any advice will be more than welcome...

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Thank you for your 'by the way...' (I was hoping somebody would take pity on me and tell me what it was I kept doing wrong

 

 

For some things only Kathryn will do. :whistle::whistle::whistle::lol::notworthy:

Edited by Karen A

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hi and welcome,i too have a dd of 14 and she's just been diagnosed in the last month,although it has taken 3 years from when things all started going wrong,up til that point she had masked her situation and the weird and wonderful things she did we just put down to 'her being her'we had never realy herad of aspergers until a year ago.we are due a appointment next week to hear the full results of ADOS that she did a few weeks ago,but she doesnt go anywhere and hasnt been to school for 3 years!we get a whole hour a week schooling !!! but at the end of the day even with a diagnosis she is no different,hopefully it just means we can learn to deal with things and now know what we are dealing with,saying that she did come out to a xnas shop on friday( first time out for months)and and was very panicy,and although very confident at home reverted back to like a small child and held my hand the whole time but was still great to get her out.anyway good luck with everything and at least you may know what you are dealing with which i find helps.regards julia

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How's your daughter doing now? :)

 

She's doing OK thanks. :) 21 now and hopefully on course for higher education next year. But there have been many ups and downs in between and it's been a slow process to get to where she is now. Although I'd like to think the worst times are behind us, I'm sure there are more challenges to come.

 

We didn't have your horrible experience with Soc Services - in fact the opposite, trying to get some help from them and getting minimal response.

 

K x

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Yes it is difficult to get females diagnosed with Asperger syndrome.

That applies especially to the quieter ones. I happened to be quite

a volatile kiddo in my teenage years due to various reasons mainly the

confusion over being different and stuff happening at home.

 

There are a few books on female Aspergers "aspergirls", "aspergers and girls"

and another 1 that i dont recall the title of right now.

 

Females are expected by society to be sociable etc type people which Asperger

females find very difficult.

 

i hope you find some help soon, changing my diet helped with the bowel problems

i was having (and also the meltdowns i was experiencing to an extent).

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(from NAS website). They can direct you to more specific support.

 

Our Central regional team covers:

 

Birmingham, Coventry, Derby, Derbyshire, Dudley, Leicester, Leicestershire, Lincolnshire, Northamptonshire, Nottingham, Nottinghamshire, Peterborough, Rutland, Sandwell, Shropshire, Solihull, Staffordshire, Stoke-on-Trent, Telford and Wrekin, Walsall, Warwickshire, Wolverhampton and Worcestershire.

 

Regional Co-ordinator: Kate Spink

The National Autistic Society

Castle Heights

72 Maid Marian Way

Nottingham NG1 6BJ

Tel: +44 (0)115 911 3360

Fax: +44 (0)115 911 2259

Email: cregionalteam@nas.org.uk

 

Also there is the NAS HELP! program for parents, carers (and those on the spectrum)with a new diagnosis.

 

http://www.autism.org.uk/our-services/support-for-families-and-carers/help-programme/help/forthcoming-help-programmes/help-central.aspx

Edited by trekster

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