Quick update... DS finally got hid DX s yesterday

[genieinabottle]

We had asd assessment yesterday at Cahms with paed, salt and clinical psychologist.
We (dh and i) did the ADI, DS did the ADOS and some observations.

We got two DX: Autism and speech and language disorder (they indicated oral dyspraxia re: his speech sounds)

I'm glad this is all over. And i feel quite numb atm, with small outburst of crying i don't think it has really sunk in yet tbh...
btw used to be mysonben before name change if anyone remembers me...

Hiya, tis star. You'll be okay because you have known for a while so you probably don't have to handle the shock, just the dashed hope that it is all a horrible mistake.

I'm very sorry anyway. It's a parents worst nightmare getting news like that. Have you ever contacted RGO? She is brilliant for post-diagnosis support and is very generous with her time on the phone for a next steps plan or just to talk through things.

Thanks Star. I never heard of RGO... who is she? Could give me some info please.

Ta

< passes cake>

please remember your allowed to feel numb and crappy x

Let it sink in and it's good news as now you know how you can help and what is needed.

( big hugs)

www.autismsupportservice.co.uk/

Some of us here have used her to get to grips with what is 'out there' and for general guidance whilst we are 'waiting for professionals to get involved'.

Some of us have subsequently then used her after we have seen what it is the professionals are actually offering but that depends very much on your area and needs.

She's very fair and doesn't ever make you pay up front or commit to anything in advance.

Hope that helps.

Cheers for that.

They have recommended a referal to OT, apparently the CP will do that.
They have said off the record to watch him carefully when he starts school as he is very passive and tends to withdraw completely when anxious... in other words that will make it easy for the school but hard to get adequate statement

Genie

I remember you from your writings in your previous name and am sorry to hear about you being upset. You are allowed to feel upset but he is your dear and sweet boy no matter what DX he has and that won't change who he is. You can still be his best advocate for him and that is what you need to be for him now as well as being his Mum which is very important!.

Does your DH now accept the dxs now that it is official?.

Would strongly suggest you apply for the Statement now from the LEA and not wait until he starts school. IPSEA are very good at the whole minefield that can be the statementing process {{www.ipsea.org.uk]].

www.ipsea.org.uk

direct link to their website.

genie I'm afraid I agree with Attilla for a child of your ds' nature. It will be easier to get a statement now while you can control the evidence, than get it when he is in school and they are arguing against you that 'he's no trouble'. He might not be, but that doesn't mean he is learning anything.

Applying for a statement now will also mean all the agencies bump him up their lists as they'll have to comment and they can't if they've never met him, so just the application can get things moving. Also, they'll all be determined to show what they are doing, which if is nothing, doesn't make them look very good.

You'll 'probably' be told it is unnecessary, too early, not enough evidence etc. but my ds is very HF and without oral dyspraxia and even though I was fobbed off I still got a statement the first time applying.

IPSEA can help, but also the person I just mentioned can help you get to grips with what you should be asking for at this stage.

Hiya glad you got that side of things sorted as I know what a stress it has been for you.

We got our dx today too - Aspergers!

And Claw yesterday.

It all happens at once.

I am heading down the statementing path too.

genie, it's lou. Well done! Your dear little B is one step closer to getting his needs met. Glad you could hold it together both ends.

Sorry to hear your news although I hope it's bitter sweet in some way in that it allows you to get the help you need.

I'm afraid I don't have any practical suggestions - the others here are much more knowledgeable on that front.

It is a shock. Go easy on yourself. You too debs40 and Claw.

Remember you well
We got statement at 3.3 for DS (passive ASD). Agree it is easier to get when younger. Our LA have tried to hard to shut us out and just deal with the nursery but because he only goes so part time they haven't been able to get away with it and also nursery have been brill at giving us access. Doubt this would happen at school age. Also some schooling options you will need a statement eg if you wanted school with a unit or anything. Its good to have in place before you have to deal with transition.

Look after yourself, take a breather.
It just tells you where he is today, not where he will end up

(used to be Grumpy)

Just to say, do be kind to yourself for a bit, take some time off from the battles to let your emotions catch up with where you are now. It's a really hard thing getting a dx, much more of a shock to the system than you think it's going to be. Everything's changed and everything's the same. The battles will still be there whenever you're ready to start fighting them again.

"It just tells you where he is today, not where he will end up"

Fabulous way of putting it AgnesDiPesto, and very true.

Well i had a whole day to reflect on things and tbh, i am quite surprised with myself.
I feel a little sad for brief moments, but it soon goes, i'm handling this a lot better than i thought i would.
Before when i used to think about getting the formal dx i used to really feel like crap.
But it isn't as bad as i imagined it...

I guess it's because we had been told by paed before, and Bibic, so it wasn't a massive shock.
The massive shock in fact was 15 months ago when the CP suggested ASD during our first appointment with her. The following months after that, with my frantic search of any info about ASD, were far worse.

Anyway thank you for suporting replies and the advice.

Glad you got their in the end. Hope to "know" officially myself at the end of July. ADOS is on the 6th July.

Good luck Wasuup, not long now then.

well done, the whole process is a bit of a rollercoaster. So glad you got it before schools starts, should help. Have you visited them yet?

Thanks Genie!