i feel like crying

[claw3]

just had a disastrous feeding clinic appointment.

OT assessed ds at home and was very much on side.

She then assessed ds at school and is now very much not on side.

I have been given the old 'children often display different behaviour at home' line, which is code for we dont believe you.

School have reported that ds is doing fine and has no difficulties in school and that i harass the SENCO as i am an over anxious mother who exaggerates ds's difficulties (obviously not said in so many words, im exaggerating obviously!)

She observed him at lunchtime and saw him eat ALL of his lunch. A quarter of chocolate spread sandwich, big bloody deal.

School have reported that give ds all kinds of wonderful help. This is not the case, they give him zero help. When i pointed this out, feeding clinic replied 'they dont get involved with schools disputes and i need to take this up with the school'

I reply 'well dont tell me he has no difficulties in school then'

A bit later she says again 'ds is coping fine in school with the help the school have put in place'

I show her a copy of the teachers report which conflicts with ds doing fine in school. She replies again 'we dont get involved in school disputes'

What is the point of talking to these people, if they dont even believe what you are saying.

I feel like telling them all to take a run and jump.

Whats the point of ds being given a label, if no one believes a word you bloody well say

I give up!

Off to CAMHS appointment now, rant over!

Fucking hell black cloud is back just received a reply from the ASD assessment service, i wrote requesting that school not be invited to the dx meeting on 23rd June.

Following your recent correspondence with ASD, Dr X has asked me to change the multi-agency meeting that has been arranged on the 23rd June from a meeting for an observation/play session and meeting which will involve having ds present for the first part of the assessment. I will forward you the change of appointment letter which will explain the structure of the session to you. It will still take place on the 23rd June at 9.30am in Room 2 X

Dr X has also asked me to mention that the school do need to be present for this assessment, their involvement through the assessment is essential and without your consent to have the school involved we would need to halt the assessment process. Should you wish to discuss this further then please let me know and I will ask Dr x to give you a call.

The fucking bastards

Ask Dr X to give you a call?

Go through with the 'first half of teh assessment' on Jun 23 and at the session explain to Dr X that you are indispute with school and don't want the assessment to be tainted by that.

If he woon'y continue the assessment without school present then complain strongly to your PCT. If you were HE-ing there wouldn't be a school to be present - so it's the usual bullshit

And Star is right - if t means starbing for a fortnight to scrape the money together 0 go for a private asssessment

Claw, this is rubbish. Her is the link to the National Autism Plan. It is non-binding and different areas implement this in different ways. However, there is no necessity for school to be present at a multi-disciplinary panel (MDP) to discuss outcome and diagnosis.
www.rcpsych.ac.uk/college/faculties/childandadolescent/newsandinformation/thenati onalautismplanforc.aspx

For example, in this area, school completes a questionnaire about DS which will be forwarded to the panel. The Ed Psych will also contribute if they have seen the child.

School does not sit on the panel or attend assessments. This is a clinical matter. Requesting input from school is one thing, having them involved in assessments seems inappropriate.

I would ask the NAS about this too as this seems very odd.

I think your paed needs to explain what the diagnostic pathway is and where you are on it. There should be something written down to show how assessments should proceed and who should be involved. I would ask that they send that to you.

Clearly, it is important to draw information from all significant settings but this seems to me to be different in substance from insisting that the school attend a meeting. I was told that the ADI/ADOS scored on algorithims are the most significant contributors and the rest of information gathered is used as context.

Is school being asked to attend a diagnostic MDP or clinical observations? I would really ask what the justification is for this. If school attend the panel so should you.

I am utterly appalled at the thought of school having to be present at a medical appointment, it's breaching your DS's and your confidentiality (I say your confidentiality because it's possible you may be discussing family medical history/PG and birth). agree with Wet about complaining - this is outrageous. wonder if from a data protection point of view this might be worth exploring with the PCT....

granted DS was assessed in nursery year, but for his multi-disciplinary assessment there was never any question that school would be present - a SALT had observed him in the school nursery, and that report was available to the professionals, that was ample info.

I emailed the senior SALT who provided the report which basically said this child has ASD and explained what happened.

She has obviously emailed/spoken to the ASD service and i have just received another email from the ASD service stating:-

It is important that a school representative is present at the concluding meeting of the Autism Assessment Service as we need to gather information from all relevant sources. All information and opinions are important in order to build up a complete picture of a child?s functioning in a range of contexts. As I mentioned last week, it is not uncommon for children to show different profiles in different contexts.

Have a good half term break

(I am now away until June 9th. See you on the 23rd)

I have emailed him back stating:- I am happy for you to gather information from the school and school are perfectly entitled to their opinion. I just do see why this cannot be done prior to my attendance.

I have also spoken to Ds's CAMHS therapist and she is happy to support moving ds to another school and will write me a letter.

There is no way that i will have school there.

Ds has come home from school today with a letter in his book bag. School have arranged for the school EP to come in and observe ds in the playground and in the class room.

So far ds has been assessed at playtime by ASD Outreach, she witnessed 2 incidents of 'conflict' although she says it didnt come to blows.

OT says she observed Jacob at playtime, playing a running around game with others.

What is the point of one observation, on one particular day, what will it prove?

It is important that a school representative is present at the concluding meeting of the Autism Assessment Service

I've highlighted the key word above - concluding.

Your 23 Jun meeting is just the start of the assessment.

I agree totally with what the others have said - an assessment is a clinical matter and as such school have no place there at all.

It does sound as though these Drs haven't a clue - espcially when they don't appear on the GMC register as specialists.

i'm sorry you're having such a difficult time Claw and I'm sitting here absolutely seething for you at the crass stupidity of the fuckwits you are being forced to deal with here.

But if CAMHS wil write a letetr for you I think that will carry more weight than all the other dickheads input put together.

the key thing (even more important than SENDIST) is to get him out of this toxic school and into another.

Best wishes

Wet doesnt concluding meeting, mean the last meeting?

Star, i feel like im being ganged up on and bullied.

I dont think i will physically be able to sit in the same room as that SENCO without strangling her!

Wet is right, meeting his needs is key and a move to a better school will surely help with this. If this shower mess up the dx, you can get a referral to a specialist centre as I've said before.

I would, however, ask them for a copy of their pathway and confirmation of the standardised tests they have actually undertaken. The ADOS/ADI are scored and you need clarification of whether they have actually undertaken these tests as per best practice. The ADOS is videoed so it can be used at the MDP I think for discussion.

Thanks Debs, senior SALT has also given me the name of a place to get a second opinion, if all else fails.

I will ask them.

I agree Wet is totally right and i will focusing my time and energy at getting ds out of that school. A statement is the least of my worries at the moment.

Will let you know what LA say about my offer.

Thanks everyone, felt like it was me against the rest of the world today, i dont know what i would have done without you. I could kiss you all

All sounds a lot more positive Claw
Fingers crossed about the new school
You are doing great job

You are not going to believe this LA have replied to my email:-

"I took ds?s case to our case reviews panel today and explained your concerns. They have agreed to go ahead with a statutory assessment of ds?s needs as they feel this will help you and school identify the level of support ds may need in school"

Im

Shocked

I have been copying the LA and Board of Governors and EP into my letters to the school ie the poo incident, school refusal, my response to the school's IEP etc. I have kept on at the LA, about whether ds meets the legal requirements etc.

But i really wasnt expectng that. I offer not to go ahead with the process and they agree to go ahead with it! reverse psychology was all it took, by all accounts

Im not sure how i should be feeling to be honest, happy i guess!

Its been a pretty unbelievable day hasnt it!

Perhaps they thought i wouldnt go ahead with the tribunal. I received the date for tribunal 2 days ago and im assuming they would have received too. Maybe they realised i was prepared to go all way.

What happens next, now they have agreed? I havent thought that far ahead, i was taking it one step at a time.