Claw how is DS getting on?

[debs40]

Has DS gone to the new school this week? Sorry if you've mentioned the date he is due to start but I couldn't remember.

When do you have your dx appointment?

Ours is 24th and my mind is all over the place at the moment. I hate the thought that other people know the decision and I don't (e.g. my OT to whom I spoke this morning!)

He is going to do 2 half days this Thursday and Friday with full 1:1 support to help him settle and hopefully full time from Monday.

We had Dietitian, dentist and ASD dx meeting on Mon, Tues and Weds, so went for Thurs.

Dx meeting day before yours 23rd and NO CRAPPY OLD SCHOOL WILL BE THERE!

Im going to have to write myself a list of questions to ask, not sure what to include though eek!

EP, SALT, CAMHS will be there too.

Have they given you any indication of what dx might be?

Well the children are only put on the SCD list if they are believed to have a PDD so it should be a question of which e.g. AS or PDD-NOS. However, they haven't said this but there is always the chance that they will say it is a SPD problem which has impacted on other areas.

I actually think that is largely what autism is so I always think it's a distinction without a difference.

Just composing polite but firm response to EP about her rather pointless Consultation Observation Record. I spoke to an independent EP on the phone this morning and it was like coming home - we were just chatting and everything she said was so DS, it was amazing. She can't see him until November though.

Exactly Debs, where does one start and the other end. The first input i ever had from a professional was sensory OT and all of his difficulties could easily be explained away as sensory issues, because that is exactly what they are!

Even his soiling problem is because of limited sensory awareness. His speech delay is caused because he cannot hear the difference between sounds.

Which is why im so pissed off with OT for being fobbed off by the school grr!

Im just writing a list of exactly what ds's difficulties are and how these impact on him. Im expecting this dx meeting to be exactly the same as every other meeting, self-diagnosis!

Do you think there will ever be a day, when all the chasing up and correcting people stops?

Im expecting this dx meeting to be exactly the same as every other meeting, self-diagnosis!

Precisely! It would be nice to have the feeling that someone, somewhere knew what they were doing or was at least honest enough to say 'I don't know, I'm no expert'.

I don't know why the NAS don't turn their guns on stuff like this and statementing.

They actually want to observe ds for an hour before the dx meeting. Despite already giving me a verbal dx of autism. Makes no sense!

Ive given up on sense Debs, it all boils down to am i happy for ds to get a dx of autism on the 23rd from people who really dont know. The answer is yes i am, because i know he has autism.

Do i want my child labelled, no. Do i want my child to receive help and support in school, yes.

SN's is the biggest pile of wank, ive ever come across. I dont how and why professionals are allowed to get away with it. But i shall smile sweetly and nod in all the right places and dx my own child.

Oh and ds is really looking forward to his new school, he is counting how many sleeps until he can go!

I gave him the choice of going back to old school to say goodbye or sending a card. He didnt want to do either.

He told his brother, he had enough of getting beat up every day at his old school

Thanks for asking Debs.

'am i happy for ds to get a dx of autism on the 23rd from people who really dont know. The answer is yes i am, because i know he has autism.'

This actually brought a tear to my eye. This was me almost a year ago. It is all just so wrong.

I figured at the time, that he 'probably' had autism, and that I just wanted all the faffing about to cease so I'll get him a dx and then carry on researching and figuring him out and if it turns out to be wrong then I'll consider whether trying to get a dx changed would be in his interest or whether things were going well with the 'wrong' dx iyswim.

Turns out it's screamingly clear he has asd, which makes me wonder what on earth the point was of all that faffing and stalling. ANY professional with a bit of training in asd could have diagnosed him within 5 mins I'm sure looking back.

Star, the system has failed ds badly when left to them. When ds was 3 years old, paed gave him a developmental check and he was very advanced in copying the pattern of bricks etc, etc. She told me 'there is no way your ds has autism and dont let anyone tell you otherwise'!.

I went away feeling naively reassured. This person was an expert, why shouldnt i believe her i thought!

His eating and tolerance of touch, fabrics, textures etc didnt improve and ds was referred to sensory OT (after someone on here told me about sensory issues) i insisted he be referred to OT.

On ds school file when i recently requested it, i found a convo between SENCO and OT in 2008. OT actually told SENCO that ds displayed as an autistic child and in brackets (OT has not discussed this with mum)

Yet when i mentioned i suspected ds might have autism, to both SENCO and OT they acted like they knew nothing about it and looked at me as if i was mad.

I doubted myself. Felt guilty even for thinking there was something wrong with my child, when no one else did.

Now i know my ds has ASD and i pity anyone who tries to tell my different! [tough cookie face]

Oh Justabout, it gets better with OT and SENCO. In the same convo, OT tells SENCO after 1:1 clinical therapy sessions that ds is

'severe defensive'
'scared in his own skin'
'in flight or fright mode the entire time'
'movement actually makes him physically sick'
'will have difficult standing in a line'

2 days later SENCO writes that ds has tried to climb over the school fence because someone touched him. Refusing to line up and running away and hiding and staff having to hunt for him.

OT failed to write a report or disclose of her clinical findings. SENCO failed to tell me about these incidents.

Now both OT and SENCO are telling new OT, ds has no difficulties and dont take no notice of mum, she is a nutter.

Amazing the lengths some people will go to, to cover their own arses at the expense of a child!

Youre right, no one wants to mention it. You literally have to tell them, you think your child has autism. I wonder why, are they that scared of getting it wrong?

Justabout, the thing is new OT believes them, why would school and old OT lie

Im now having to fight to get new OT to actually assess ds and not just to take school and old OT's word for it!

All it takes is a couple of bad apples to ruin the whole barrel.

Anyhow enough of my moaning, ds has a new school and ASD dx meeting in 2 days and statutory assessment coming up. Things are looking up

This all sounds really rubbish, I've been following for a while.

My son was obviously ASD to everyone except me though no one would tell me (SALT, SENCO, Teachers all knew). Then a "rebel" consultant Paed was seeing him for a clinic appointment and I told her my concern he was moving from an S&L unit to mainstream and she just blurted out "he's obviously Aspergers - do you want a written diagnosis". I went from knowing nothing to getting a diagnosis in 2 weeks......which was eventually confirmed through the proper LEA system 2 years later!

Surely that's how it should be - they all know what the diagnosis is but are just not allowed to give it.

prolly to do with stats. I suspect they have a target quota of children they can diagnose with asd.

My old GP told me that their practice can only diagnose a certain number of patients with chronic conditions, because chronic means free prescriptions, so they have to keep it below a certain number. He also told me that the amount left in their prescription budget at the end of the year is linked to their pay.

I have no idea whether this still happens or whether it can be extrapolated to the diagnostic clinics, but given that it has and does happen in other circumstances it wouldn't surprise me.

what the frig does that mean? Let'd diagnose a few extra to make up the numbers?

Do they get next years' funding based on no.s with diagnosis?

I despair. Thase are the lives of small children ffs.

My school also strongly suspected DS was aspergers, but didn't tell me. Nor did they tell me he was on School Action and the paper I was signing at parents evening was actually an IEP.

I didn't realise for 3 years that I was signing an IEP! Or, more importantly, that he has Aspergers. We too have changed school...

from me too. You poor thing.