DD just diagnosed with Asperger's....tips/advice/anything appreciated!

[OverflowingMum]

Our lovely little 5 yr old dd has just (as in today!) been given a diagnosis of Aspergers Syndrome. It hasn't come totally unexpected, but still feels like a bit of a blow to have said for certain!
At the moment my head is reeling I am feeling totally overwhelmed.
One of the key discoveries from her 2 day assessment was that her general intelligence is above average. At school her performance is currentlywell BELOW average - and the proffessionals feel this is due to her not being engaged/motivated, rather than a lack of ability.
Obvioulsy I am going to be discussing all this with the school and trying to get some stuff put in place for her but I feel really angry that I have been going up to school since the end of last academic year to expressmy concerns over her lack of progress and have been constantly fobbed off with comments like "she is just a late bloomer" and "it's because she has a July bday"
She is also going to get some Speech and Language input, and some Pyschology input to help with managing her behaviour, so that is all good....
So anyone got any tips...LOL about anything!
Especially about how to go about the school situation...feel so cross that she is achieving so far below her potential....

No one want to hold my hand

Could do with tips on school situation....anyone....

bump for you - no advice sorry

Does your school have a SENCO (Special Educational Needs Co-ordinator)? I was completely poleaxed when my DS was diagnosed, and I was fortunate that the school had a handle on it and took over. I've now got a diagnosis for myself.

DS has an IEP (Individual Education Plan) which I see and have meetings at the school about, where we discuss what does and doesn't work for him, and compare behaviour at home and at school. The school also gets outside help from the county.

There's LOTS the school should be doing, but just wanted to post and say you aren't alone in all this!

Sorry to hear you're having a tough time with the school - can't BELIEVE those lines they are feeding you!

At the very least they should have an IEP for your dd. You might also want to look into applying for a Statement, which sets out the help that your dd should get at school. I haven't been through statementing (yet) so hopefully someone with experience can give more practical advice about that.

If the school is hopeless in general when it comes to SN it might also be worth looking for a different school.

Thanks for the replies.Helps just to know there are others who have been through it.
Even though we have had our suspicions about possible diagnosis for dd for a long time, it still comes as abit of a blow to have confirmed!
I am so shocked at the discrepancy between her intellligence as revealed by the psychology testing, and her performance at school. I feel like I have let her down by not pushing the school harder about her lack of progress....
Then again, without a diagnosis it was hard to see WHY she wasnt progressing really I suppose....
The thing is she is well behaved and quiet at school, and so I imagine is just left to get on with it a lot of the time, whilst in fact she is no doubt spending a lot of time totally zoned out of what is going on....
I have no idea whether the school has a SENCO...do all primary schools have one?Would it just beone of the staff nominated as one?
The school isn't perfect, but on the whole I have been happy so far with my other children there(I have one who has just left and one in Y5 there)but then again they are both very able children, so haven't had to deal with these kinds of issues before....

I have initially asked for a meeting with her class teacher, and will see how things go from there I suppose....

Thanks for the tips

Don't feel you've let your daughter down. She is only 5, just starting out, plenty of time to get her back on track. The fact she is intelligent is a HUGE plus! My DS was 5 when he was diagnosed.

I googled to find out your answers about SENCOs, and found this

www.teachernet.gov.uk/management/atoz/s/senpolicy

It looks like that all mainstream schools have to have one, and the link details what they have to do to conform to the SEN code of practice.

overflowing,

Your DD to date fell through the cracks because nobody noticed her struggling in class (I note she is both non disruptive and compliant during lessons).

All infant and primary schools within the state sector should have a SENCO.

Would strongly suggest you apply to the LEA for a Statement on your DDs behalf. This is a legally binding document that will perhaps go some way to making her school life easier (this is particularly so the higher up she goes through the school system).

Statements are not solely about academic needs; they can help with social needs too. Your DD's needs need to be properly recognised; antyhing short of a Statement will not have any guaranteed provision, well certainly provision that is both specified and quantified. Provision on a Statement needs to be both specified and quantified.

Her class teacher may not know all that much so may be well meaning but useless. Special needs education is not really taught in any great depth at teacher training college.

It can take six months to get a Statement up and running. I would apply asap for this document. If you are wondering what to write you need to look at www.ipsea.org.uk as they have model letters you can use. You will need to write to the Chief Education Officer at your LEA and give this bod six weeks to reply. Mark that date on your calendar. If the LEA say no you can appeal; school cannot.

You need to make the Statement application.

I realise all this is very daunting but really and truly you are your child's best - and only - advocate. You must act and soon. Statements can be easier to obtain the younger the child is; it gets a hell of a lot harder in Junior school.

Do not readily believe these people either if they say your DD is too "academically able" to receive a Statement. This is not the case at all.

I would also look for another school for your DD if they continue to give you the runaround. At the very least your DD should be on their SEN register and have an IEP.

"She is also going to get some Speech and Language input"

Hmm, have they told you this as well?. I tell you now that this will not readily happen short of a statement being in place. She will likely only get one very brief visit each one or even two terms.

Keep on the school's case.

My DS has an ASD but is doing well in mainstream school with an IEP. Just like your DD, he is bright, but achievement does not always follow if the school aren't aware etc. My DS struggles to concentrate so all the staff are aware of this and keep an eye on him to make sure he is listening etc.

thanks for the replies....
This whole thing has me so baffled and frustrated already tbh.
I saw the class teacher onthe last Firday before half term. She is going to arrange a meeting with herself , the head and the SENCO (who it turns out is a part time meberof staff I've never come across)forthefirst week back. She is going to put her on an IEP...but not sure this will be enough...

I am worried about her Speech and Language input- they have mentioned that her problems in this area could be contributing to her poor progress in literacy so I REALLY want this addressing.Was trying to do some rhyming words with her today, and she just couldn't grasp that cat rhymed with hat ....then said table rhymed with car (had pictures to choose what rhymed with car...table or star) no mater how I tired to explain it she couldnt get it...
The conultant Paed also brifely mentioned that she MAY have Dyslexia....but obviously that wasnt fully assessed...so not sure how to get that looked into.....

If I apply for a Satement will she get further assessments eg by an Ed Pysch, and SALt? as I feel there are still a lot of unanswered questions? Can the school block my requst foir statement? I am surethey just dont get it, becuseas you say sheisquiet and well behaved in class...but she is FAILING badly in academic terms....not to mention social issues....but I already get the feeling school think I am totally over reacting....

This is all driving me mad...I cant sleep its all just churning round in my head, and I'm so exhausted....which makes dealing with her harder....sigh...

ok...been browsing IPSEA....
What sort of things would count in terms of me believing that the school cant meet her needs by themselves?
The things I could think of :
She has continually failed to make progress, despite being sat in the bottom group that has the highest proportion of TA time
Her lack of progress with phonics despite attending an extra phonics group
The fact that I imagine her actual needs are quite complex and are going to take further assessment/input by outside agencies such as Ed pychs and SALT
Are those the sort of things?
Not sure what else,as I dont know what else school is going to put in place
Could the things above be achieved without a statement, ie just by the schol arranging them?

If I apply for a Satement will she get further assessments eg by an Ed Pysch, and SALt?

School should arrange for your DD is see an EP. However, EPs are under pressure themselves by the LEA but these people have clout.

Can the school block my requst foir statement?

In a word no. You make the request to the LEA, you know its been done then. Also you can appeal if the LEA say no, school cannot.

"I am surethey just dont get it, becuseas you say sheisquiet and well behaved in class...but she is FAILING badly in academic terms....not to mention social issues....but I already get the feeling school think I am totally over reacting..."

This is exactly why you should be applying for a statement asap. Longer term too you may need to find yoru DD another school. Some schools just don't get the whole gamut of special needs at all.

Overflowing

re your comment:-

"What sort of things would count in terms of me believing that the school cant meet her needs by themselves?
The things I could think of :
She has continually failed to make progress, despite being sat in the bottom group that has the highest proportion of TA time
Her lack of progress with phonics despite attending an extra phonics group
The fact that I imagine her actual needs are quite complex and are going to take further assessment/input by outside agencies such as Ed pychs and SALT"
Are those the sort of things?

Yep, all those are valid points which needs to be made to the LEA. Your initial letter to the LEA though can be brief, IPSEA have model letters you can use.

"Not sure what else,as I dont know what else school is going to put in place
Could the things above be achieved without a statement, ie just by the schol arranging them?"

A one word answer here will suffice - NO!!!

Your DD is a prime candidate for having a Statement in place. She needs this asap. It can also start to address her social issues as well as her academic ones.

I have also replied to you on the SN forum.

thanks attila ...yes, sorry, sort of ended up with 2 threads on the same thing

I'm going to see what tanspires from meeting with head next week, then consider applying for a statement.
I can't reallymove dd, as I have 3 other DC at same school, and tillnow wehave been very happy with school (they did deal very well withan incident of bullying involving ds1 last year)and we have NO other choices of any sort of decent school anywhere near!
So will have to stick it out whatever....but will go for statementing if needed!

You could also ask parent partnership for some input. We are on action plus here, my child entered school on school action and was moved up to action plus at the end of her first term and has had regularly reviewed IEPs since starting school. Initially this was with a small language group, and then the nursery nurse gave her a course called 'firm foundations' which was done on a one to one basis and repeated at home.

I know others who have got statements through the intervention of parent partnership. Some mainstream schools have specialist units attached for children with ASDs, is there any provision available local to you?

We are still waiting for a diagnosis (possibly ADHD or autism, we've had observations done and we are waiting for an ADOS) but I don't think we are ever going to get a statement, but school are working with various outside agencies in order to get more support for her and to find out exactly what sort of support she needs.

My child has been in school now for 18 months (she is nearly 5) and the school have sorted out all the problems we had with SALTs (getting one was a nightmare, by the time we argued enough for one, child had caught up and was doing well) and have liased with some of the other professionals involved. She is doing well academically but behaviour can be either angelic or from the other hotter place....and she has problems with social interaction.

You do have to fight for your child and it feels like an uphill struggle because it feels like you are fighting the people who should be supporting you. Maybe now you have got a diagnosis, things will be better for you.

I am directly replying to the Original Post. Ask the school to make a formal application for your daughter to be statemented. Who made the diagnosis of Aspergers? Did the assessment people offer you and your daughter any follow up support?

Have you looked at the NAS web site, it may be worth you joining NAS ( National autistic Society ) There may be a local group with activities for both children and families.

Also find out if there are any specialist schools in your region for Aspergers children.

Can I just ask, when you say your DD has been given a diagnosis, has this been after many assessments, teacher questionnaires, paed's consultations etc?

I only ask as I was told very early on that my DS was AS, at 18mnths. After many years of continual assessments he is now 7yrs and has just been discharged from the consultant paed. AS / Dyslexia / ADHD / Autism, is all very closely linked, there is a huge grey area inbetween them all where some children sit. Your DD is not ADHD by the sounds of it, but has trouble with phonics which is more Dyslexia or even dyspraxia linked. Dylexia again has a wide spectrum of issues which could affect your DD learning.

I am only suggesting you are cautious, we paid an educational psychologist to assess DS, and it helped us pinpoint his specific needs. I immediately got into social story books and used the tools to manage AS on DS and he has progressed immensely. His final assessment deemed him to have 2 AS symptoms but he was not sufficient to obtain a Statement. I am OK with this. He has overcome many social issues he was facing through learning what the social queue is rather than knowing it inately like the next child. AS is a complicated condition, but can be helped enormously through support in class and at home.

Things the teacher should be aware of are how DD copes in social situations, what they can do to support her, does she need 1:1 for her phonics, does she need time aside each day to talk to the learning support teacher. The SENCO should def be called in to assess how she can be supported, and keep at them. She may not get funding initially for this added aupport so you just have to push as much as you can.

Aspergers is rare in girls, which is why I question maybe she is in the grey area...

Best book I ever read on it was Asperger's Syndrome: A Guide for Parents and Professionals (Paperback)by Tony Attwood.

Hope that all helps..
bump

bump

Hi Overflowing. Sympathies re diagnosis. It must be v hard to hear your fears confirmed, even if it does help in other ways.

One thing to maybe remember is that many 5 year olds without any special needs whatsoever don't really "get" phonics at this stage of the game. Though it does sound like you've been fobbed off a bit by the school, they may be partially right that regarding reading at least there is no need to panic yet. They are right that she is young in her year and this will make a difference. There are threads and threads and threads on here about children who didn't take off with reading until much much later- nearer 7 years old- but then really flew. One of my own sons was one such.

Good luck getting some help and support in place for your daughter.

I just wanted to offer my support, my DS is 8, and all of a sudden he has decided he likes reading. At school he has jumped 4 reading levels in as many weeks, and he is now back on track for his age.

Are there any support groups near you who can provide moral support and suggestions? You could try contacting the NAS helpline to ask?

The NAS website might be able to give you help and might have addresses and contact details of any local groups.

www.nas.org.uk

Hope this helps.

Hi,

My 9 year old son has Aspergers, and I can tell you it is sooooo complicated.

We are now in the process of changing school because we have been so badly let down by his current school.

They failed to notice that he had Aspergers, Dyspraxia, Visual Perception Problems and Hearing problems. They just thought he was naughty. Hence why I am changing school...

I'm not really sure what advice to give you. My experience has been pretty negative. Aspergers doesn't normally qualify for a statement. Our SENCO and IEP were absolute rubbish. Not sure what a good IEP would look like.....

See if you can get a referral to an Occuaptional Therapist if your daughter has any dyspraxia type difficulties ( esp with handwriting.)

Research everything you can. Unfortuantely you will probably have to be your child's biggest advocate. Don't trust that the school are looking after her.

We have just recently done some therapy which has been VERY helpful. Check out the sound learning centre.

Liz