DD just diagnosed with Asperger's...anyone want to hold my hand!

[OverflowingMum]

hellooo all you wonderful wise ones!
Just popping in for a bit of virtual handholding!
DD3 (aged 5.6)was yesterday diagnosed with Aspergers. Although I have suspected this for a Looong timeit has still come as a bit of a blow!
Although sad, Iam sure that a diagnosis for her is a good thingas htere a lot of areas it will help with
One striking discovery from her (verythorough!) assessment was that her pyschology testing showed her to be of above average intelligence.This is significant because at school she is currently achieving WELL below average, and has been since recpetion. Despite going into school numerous times over the past 2 years to express myconcerns about her progress, I have been constantly fobbed off, whith comments such as "oh, she is just a late developer" or"it's because she has aJuly bday"
In reality , she is well behaved and very quiet at school,and therefore I imagine not seen as a priority
The paediatrician suggested her lack of progress is probably down to her not being engaged andmotivated approriately, rather than down to a lack of ability...
So I have a lot of issues with school to sort out!
She is also going to get some SALT input at school, as some of her language use ,although not delayed as such,is somewhat imature and/or innapprorite. And we are going to get some pyschology input to look at managing her sometimes extremely difficult behaviour at home.
So....I feel like I am at the start of what is going to be a long and unplanned journey....but do feel better now I actually know what I am dealing with...
If anyone has any goodbook recomendations, especially about girls with Aspergers I'd be very grateful!

Not always very good at hand holding, but can manage to pass over a decent cuppa and a recommendation to have a good nosey round the National Autistic Society website and online bookshop, which has some good recommendations on it.

I think one of our ladies here has just started up a dedicated extra support group for parents with girls who have Asperger syndrome, too.

Thank goodness they've spotted her and got it diagnosed properly. Otherwise we can be so well behaved that they miss it for years and years (which is what happened to me).

Milk and sugar with yours?

Hi overflowing

Have some choccy cake with that tea as well.

I have some questions for you:-

What have they exactly said to you about SALT provision at school?. I ask this as short of her having a Statement in place I daresay she will not receive very much, infact the barest of minimums.

Has anyone ever mentioned the word "Statement" to you with regards to your DD's additional support needs in school?.

I would look at IPSEA's website and consider making a Statement application to the LEA with regards to your DD.

www.ipsea.org.uk

HI overflowing

I have posted this week about my concerns about my daughter.

Would you mind letting me know what started your concerns and what flagged her behaviour up as different for you?

Hello, sending you a very un-MN ((hug)). It's still a shock to get the dx, but rest assured that now you haev it, you can start to move things forward. DS has ASD, probable Aspergers (too young yet) but I have found Tony Attwood's book on Aspergers really useful - think it's called The Complete Book of Aspergers's Syndrome or similar. Avilable on Amazon. He's written loads of different guides, so HTH a little.

It's a different jounrey to the one we all had planned and be prepared to fight tooth and nail for everything. We've only had a dx for a few months but I would say the following:

He who shouts loudest gets the help - don't be fobbed off if professionals say they can't do anything - SALT took months for us!

Put everything in writing - that way it can't be brushed under the carpet (L learnt that from folks here and it has heloped no end)

Get a copy fo the SEN Code of Practice so you can read up on what educatros should provide - knowledge is power!

Make sure you apply for DLA (disability Living Allowance) and Carer's Allowance if appropriate.

The NAS run an EarlyBird course for parents of newly dx children (may be earlybird plus for your DD as at school?) That is a good way to meet other parents in your area who are in the same boat.

Remember, too, that there's always someone on here. I would have gone bonkers without the support of fellow mumsnetters!

Th eother thing I would say is pace yourself - I felt I had to read and do everything straight away. Try not to overload yourself as you will feel like you are drowning. Write lists of what you want to achieve and chip away a little every day. Also, make sure you and your family have some R & R too, as it is easy to forget to just be a family IYSWIM!
xxx

google 'retained reflexes' and if any of the things mentioned there seem familiar, look for a sensory trained OT who will give exercises to do to help.

oh thanks all!
Tea and chocolate cake most gratefully received!

Such great advice already too....
Yes, I must pace myself..have just been to see class teacher, now thinking I need to ring SALT to check out what exactly she's going to get, and book pyschology app,and read 10 books on subject,and memorise all relevant codes of practice and legislation,and...and...and LOL...
I do feel quite overwhelemd and a bit out of my depth at the moment tbh
I have been tosee her class teacher as a first port of call. She was/is lovely,but I'm not sure how effective she will be...
I felt that she wasn't really taking on board what I was trying to explain about the fact that her current attainment was well below what she had been shown to be capable of...
Still, she has agreed to set up an IEP for her, and I have requested a meeting at start of next term with her and the SENCO - who it turns out is the headteacher....
They do aslo have Autism Outreach Teachers that will come in and advise, so I have requested that they liase with them too.
I do think that a big part of the problem is that she is so well behaved at school, and makes a good effort to look as if she's coping....untill she gets home and looses it totally, but thats another story!
TBH I am still not entirely sure what SALT input she is going to get....I had so much to take on board yeterday some of it is a bit blurry....I do know that she is going to be referred to the school SALT....and that's about all. Maybe I should chase that up...
Also it was mentioned yesterday about the possibility that she could be dyslexic too...not sure who would follow that up??
The paediatrician did suggest yesterday that she would probably not at this stage get a Statement.Possibly not until other interventions had been tried and had been shown not to work....
It all seems such an uphill struggle.....I can see that it is going to a loong process...
Great idea about keeping a log though, I can see tha twould be really useful!
Off to check out some of your suggested links etc...
thanks all

catchymonkey sorry, didnt mean to ignore your question...
Gosh there were so many things with dd its hard to know where to start!
Social stuff: has only one friend at school, often wanders round alone at playtime,finds it very hard to join in games with her siblings,always ends up in tears when trying to join in if hse cant have total controll of the game,totally invades peoples personal space, will go up tofriends and stroke their faces,
Emotional stuff: has very poor emotional control, can become totally out of control hysterical over the slightest thing(at home only though!)gets angry and frustrated a lot
Sensory stuff: LOADS!hates certain socks/trousers etc...because of feel, hates feel of grass on bare feet, hates all swings/round abouts etc...at playground- cries hysterically if she is pushed on swing for example,toatlly hates any loud noise,
Perception: walks into things all the time, seems to lack awareness of where her body is in space
Language: uses odd/innappropriate language, ir uses certain words in odd situations,"copies" chunks of language/phrases from other people that sound odd coming from a 5 yr old,mis-hears words a lot leading to some bizarre conversations,immature use of grammer and sentence structure,lacks fine discrimination of certain sounds,
General behaviour: at school OK, but at home extremely challenging. Aggressive towards siblings, total meltdowns all the time, defiant to the extreme,can not be pursuaded to do something once she has madeher mind upnot to, cant ope with change of routine etc..behaviour worse towards end of week, or if had a difficult day at school....

I'm sure there is more....but that gives you an idea,
Oh and our concern for her total lack of progress at school (eg can barely read or write still...

HTH

ok...please excuse rubbish typing...I am exhausted and my space bar is broken LOL

Getting my son diagnosed 3 years ago with AS was the best thing that happened to us. After many years of struggle it meant we could finally get him the help he needed (though it's not been easy) BUT he is soooo much happier now and also the cutest 9 year old I know and I wouldn't have him any other way. I read loads of books but the best was 'Parenting a Child with Asperger Syndrome: 200 Tips and Strategies' by Brenda Boyd. NAS leaflets are also great. I feel it took quite a while for it all to sink in and for me to feel i really understand my son but it's been a wonderful journey and you will get there i am sure! Good luck!

Yes , I do feel a bit like I'm hitting my head against a brickwall. I have been being told for 18 mnths to "just wait till..."and "if she doesnt improve by..."
And even now talking to her teacher with her diagnosis her teacher was still "well she seems motivated/tries her best/wrote a whole sentence (illegiablly!)" and was just not getting the point I was trying to put across about the fact that her pyschology testing showed her to be of well above average intelligence, and her progress is well below average....that surely shows that something has gone wrong somewhere!!
Trouble is I don't know exactly what is wrongor how to put it right...and not sure who needs to be involved to discover that!
I think again because her behaviour is not disruptive it will be assumed that her needs are less....butif she isn't achieving her potential then surely something needs to be done.

"The paediatrician did suggest yesterday that she would probably not at this stage get a Statement.Possibly not until other interventions had been tried and had been shown not to work...."

Sigh, is this really what you have been told, its all a fudge honestly to stop parents like your good self applying.

The time for waiting is finished, now its time to kick butt!!.

Your DD is already being failed at school.
She has not even been put on an Individual Empty Promise (an alternative mumsnet name for the IEP). As your DD is quiet, non disruptive and acquiescent in class she has fallen through the cracks, that happens a lot too. However, the fact that she is very upset after leaving school is very telling - what is happening here is that she is either just about coping during the school day and bottles it all up. After school she takes out all her frustrations on you. This happens a lot in situations when children who have additional needs are not currently having these needs met. Many children who are on the spectrum do find school bloody hard particularly if they are not additionally supported with a Statement behind them.

An important difference between a Statement and something like School Action Plus is that a Statement is legally binding. School Action plus is not legally binding and thus can have very limited support attached to it. It truly is worth very little.

I would therefore now apply for a Statement to the LEA on her behalf. This is all very daunting but no-one else but you is better placed to fight her educational battles for her. Also no-one else is going to do it for you.

Hopefully the school will be happy to see the Autism outreach workers, although some schools do think that, "they know best" and become mistrustful of such outsiders.

You are truly the best placed person to enforce a change re her educational needs. You have far more power than school ever would when it comes to a Statement application. Do make that application asap, do not leave it unduly as the further up she goes through the system the harder it actually gets.

www.ipsea.org.uk is a great website with lots of information on it.

I would also look into applying for DLA as well and get outside help like Cerebra to help you with the mountainous and devious forms.

Hi Overflowing, Your post could have been written by me!!!! My DD (5.9) has just been diagnosed with Asperger Syndrome too and has EXACTLY the same issues in school. We are just starting to get the ball rolling. She is on SA, but we will get that changed after half term. Awaiting SALT, but will NOT wait much longer. Been through all this with my son who is now 7 and also on the spectrum. After long and difficult battles, he has full time 1:1 and SALT, OT, Autism Support etc etc written into part 3 of his statement. It can be done Stay strong XXXX

gosh it is all so hard!
I am a sort of person to always avoid confrontation, but I WILL fight for for dc and their needs LOL
It is hard,because I see other dc that have more behavioural problems/other more obviousneeds etc and can see why the school would prioritise them for extra help/statementing etc...
But then again there is no getting round the fact that we now have documented evidence to support thatdd is currently achieving WELL below her potential....
And just because she isn't appearing upset at schol, doesnt mean she finds it easy- we know she struggles with showing and expressing approapriate emotions....and her total meltdowns at home after school I am fairly sure are contributed to by having to "cope" through school all day...

A couple of you have mentioned DLA...hadn't even thought of this
Would dd's needs be considered severe enough?
She certainly takes up a LOT more of our time to manage at home than our other 5 children LOL, but not really sure she would qualify for DLA....again it's the whole thing of others "appearing" much more needy than her....

"It is hard,because I see other dc that have more behavioural problems/other more obviousneeds etc and can see why the school would prioritise them for extra help/statementing etc..."

Actually school would not necessarily prioritise such children at all.

You have more than enough evidence to suggest that your DD is not meeting her potential here.

Certainly apply for DLA; those forms are emotionally tough though and you should have outside help to complete it (this is why I mentioned Cerebra as they are good with such forms). Also this board is a very good place to ask for how to complete the DLA form.

DLA can make a big difference to the outcomes for us and our families. Just because ASC is often an 'invisible' disability doesn't mean the need isn't there. Especially with girls, who often act quiet and therefore end up with nothing as they are "coping". Don't ever worry about applying for something you're not entitled to - the system is designed to repel anything that doesn't match the description of 'real need'.

In fact it often repels people with real needs too, but that's another story

Have a look for the Lamb Inquiry report too. It says that schools must give every disabled child the same chance of success as other children, so if her IQ says she should be achieving at a certain level, then the schools have to work towards making that happen. No excuses. Well, they'll probably try them...but there is no excuse for letting a disabled child fail because they're disabled. That's called 'neglect of a vulnerable individual'.