Just received Aspergers/ASD diagnosis for DS - please talk to me.

[Bugsy2]

Feel so mixed up about this. On the one hand I'm glad I'm not a crazy woman for thinking there was something wrong for my DS, but on the other hand I'm so upset for DS & even though I knew there was something wrong, I feel shocked by the unequivical diagnosis.
Also realise I have a steep learning curve ahead. Please other ASD/Aspergers mums talk to me.

Good luck Bugsy, I hope that the meetingnisn't as bad as you anticipate.

I am sorry that you had the shock of diagnosis. you have given me the courage though and I have made an appt to see the GP in ds1's name tonight. I have been putting it off and putting it off, but really just want to know once and for all.

((((HUGS))))

how did it go Bugsy?
hope it was ok and he didn't try and fob you off
Pussinslippers...are you sure you haven't got my boy there? - you just described him perfectly ..it's still trains and lego all the way here too (with anything scientific thrown in for good measure). You've also made me more encouraged about getting an actual statement for my boy (the school have already told me i won't ...and we haven't even got a dx yet)

Hi everyone, thank you for wishing me luck.

It was a very interesting meeting. There was clearly a degree of embarrassment that DS's problems had largely been ignored for the last 2.5yrs (because he is not disruptive). Both the SENCO lady & the Head were very nice and receptive. They proposed a raft of programmes to help DS (which on the one hand was great, but on the other hand slighly annoying that it took a DX to get them to do this).

They did say they thought that they didn't think I had a hope in hell of getting a statement. The LEA has recently changed the criteria & they are now saying that children must have severe problems, usually requiring a diagnosis of at least 2 issues.

I'm not sure if ex-H was a help or a hindrance. He is in denial to a certain degree & was trying to suggest that DS was as normal as the next child, which made me want to strap tape to his mouth. Fortunately, the head & Senco largely ignored him - in a nice way of course!

"They did say they thought that they didn't think I had a hope in hell of getting a statement. The LEA has recently changed the criteria & they are now saying that children must have severe problems, usually requiring a diagnosis of at least 2 issues".

Hmm is that what they said is it?. TBH I'd take no notice of the nay-sayers and would go ahead and apply for it yourself.

I would talk to IPSEA about your LEA asap because it could be that they are acting illegally by moving the goalposts yet again. LEA's cannot plead ignorance or use blanket policies to deny children statements; the law is there to protect such vulnerable children's educational needs. IPSEA can help you; I would urge you to contact them.

An LEA for instance cannot say that a child has to be say 3 or 4 years behind in order to get a statement. That is illegal and LEA's know it.

Have they put your son on School Action Plus?. It sounds like they've done something like this; the problem you now have is that this programme is not legally binding and in a worst case scenario not worth the paper its written on.

Well thats good news that the school are finally going to help him. Don't let them put you off requesting a statement as it will legally bind them to provide a certain level of support. I'm pretty sure that it is illegal for the LEA to insist on a dx - ds doesn't have one and tbh is unlikely to get one and yet he has a statement. Meerkat will undoubtedly know more about this.

It can be a long hard battle but it is definately worth it. Good luck

LOL - I knew she'd know

Urgh, it is such a minefield - that I don't really understand yet!
I also have ex-H, in denial, which doesn't help. He has just been on the 'phone cross questioning me. I keep trying to explain to him that the school has its own agenda, which is to keep its funding allocations to a minimum.

What is School Action Plus Attila? They were talking about a learning mentor - is that the same thing?

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

Bugsy

The above may prove useful to you re what SA plus is and does.

Thank you Attila.
I keep coming back to the thought that selling up & moving to Brighton and releasing enought equity to send DS to a Montessori will be better than a long hard battle with the school.
I just don't know. Ex-H is being about as much help as a sack of poo as well. He doesn't want to fight for DS at all.

Bugsy selling your house is drastic but montessori was fab for ds1.

What Atilla said is true- the LEA cannot do that. But you know, they LIE these people. They do. I was told first time round (with ds1) that the school had apllied and been refused- a lie. Tghen I was told that I wouldn't get a look in. I passed first panel, goes to second this week (fingers crossed). And even knowing I'd done this, the Ed Psych this week for ds2 told me I couldn't apply myself but needed her permission!!!!! How bloody thick do they think we are?

Go ahead and apply using a standard letter from the IPSEA website, its not hard.

Oh and when you do apply- where it says why school can't meet the needs of your child....

put it doesn't understand the statementing procedure, as it informed you that LEA would only stetement a child with 2 dx's and you know that's not rue as it is illegal for them to do so. I put lots of similar comments in . Whichever may be lying, it gets them both.

Peachy, can you tell me a bit more about your Montessori experience with your DS1?
I would be really interested to hear.

They went (ds1 and ds2) to a Montessori Nursery. DS1 was referred t a PAed for the first time at 2, but he started Montessori at 3 and all that time dispalyed no AS symptoms, because he wasn't frustrated. He could also read mroe then than in yr1 .

It was a really relaxed friendly nursery, but it adhered to the Montessori approach- children takingr esponsibility, learning at their own rate, guiding their own learning with minimum intervention. I did a presentation on it for my Access course, and found that Maria Montessori did i fact develop the technique with children who today would be classified as SN.

Are there any specific questions you have?

I really like Montessori. I did part of the Early Years training to be a Montessori nursery teacher.
It would be relatively easy for me to sell up in London & buy a house outside & release enough money to pay for the children to go to a Montessori primary.
I desperately want DS not to be so miserable at school. If he is not happy, I'm not going to be either, so I'd rather live in a rabbit hutch if I could find somewhere for DS to be happy.

Pussinslippers - Thank you for listing all those lovely things about your ds. I am at the start of getting my ds1 dx he is 2 and has delayed speach. Like Bugsy I've been in total shock that he won't ever be a 'normal' boy and hearing how your ds copes with things really gives me some hope.

Bugsy - sorry to hijack your thread. I know exactly how you feel and I'm still really tearful after the shock of it all. In my blind panic last week I enroled my ds at a montessori pre school as I thought they looked really geared up to helping sn children. He goes tomorrow afternoon.

nicand2 - it is a lot to get to grips with, isn't it? Keep posting on here, it is marvellous.

Bugsy, I don't know anything about Montessori, but you do, and you know your DS1, so I would say follow your instincts and do it if you think it's right for him.

bugsy and nicand2 -
I wanted to add something very important, some advise I got from a friend who has an autistic son.

It's easy to go straight into the battle and find yourself working flat out researching and sorting out schools etc, but you have to be gentle on yourself. This is a very stressful time for you so make sure you look after yourself.

Reach out to people. You'll be surprised. We actually sent a very upfront group email to all our friends saying that our son has been diagnosed, we are terrified, in shock and scared about the future and we need help and support. We also asked people if they knew anyone who could advise us. And you know what, the first evening we had friends coming round from 2 hours away with food and hugs. We've been put in touch with nutritionists, paediatricians, someone who works for an LEA to advise about statementing, lots of parents with autistic children - and the love and support has been overwhelming. I think these days we live such isolated lives, especially in the cities, but if you reach out to people they will carry you.

big hugs xx

what a lovely post, kitegirl

Thanks for bumping this Saintmaybe, I hadn't seen Kitegirl's post.
That is quite inspiring Kitegirl. I have been unable to tell anyone but family & professionals so far. I can't actually bring myself to mention it to friends, I am afraid of their pity. Must give myself a figurative slap around the chops & stop being silly!

Aww kitegirl
how wonderful...actually filled up then

My Ds was diagnosed in Jan. Sorry if I cant give you any advice b/c Im still learning, but I want you to know that I wish you well.

OH WAIT I do have advise..I though this was a good Idea. Some people eye my child judgementally & I read on a website that a lady who was going through that made little business cards explaining autism. That way she did'nt even have to say anything to the "judger". I thought that was pretty cool.

Oh Bugsy, I can imagine how upset you are feeling.

My DS1 is having a developmental assessment in just over a month's time, and I am dreading the outcome.

No real advice I'm afraid, but wanted you to know I am thinking of you.xx