Advice on how to handle meeting?

[bochead]

I sent an email out to the tertiary diagnositic team the other week after the farce where I wasn't informed they were coming into school to observe my son. I sent the email as years of meetings have taught me my verbal persuasion skills seem to be zero.

I want the team to investigate the following issues:-

1. Sleep disorder?

I've been keeping a sleep diary at the request of the Guys pead & had realised that he regularly attends school having had as little as 3 hours uniterrupted sleep.

1. Dyspraxia/fine motor skills?
2. Auditory processing ?
3. Autism Diagnosis - is he or isn't he?

It's my understanding from the ADOS clinical assessment so far that DS only meets the criteria for the two parts of the triad of impairments. He scores within the remit for ASD on social imagination and social communication but not for social relationships . (I visualise it as a two legged stool).

1. Sensory integration disorder?

So far they've done some standard cognitive tests, connors (4th time) and the ADOS but nought else. Any advice on how I force this team entitled "neurodevelopmental" to actually look at ALL the issues above and give us the official recognition needed (diagnosis?) to access support? The independent EP we got last year and a recent behavioral optremetrist report both mention items 2-5 so I know I'm not just being an "anxious Mum".

Any advice on how to handle the face to face? There will be local experts present who are past masters at blaming the parents for the weather rather than doing their jobs, so I can't afford to let the meeting get blown off course by a "caring carrot" yet again.

bump?

bump

I wouldn't y'all to think I'm bricking it or anything

I really need advice for keeping the meeting "on track" diplomatically.

Ok. If this helps I had an OT stating sensory processing issues, and EP stating emotional, social & communication issues and camhs initial assessement plus the ususal forms stating certainly showing autistic traits.

First assess as you know was crap. ie "complex" get his hair cut your doing fine"

What i was told my the MN Nurse at camhs who was actually on my side was to request a second opinion but point out fully the reasons why, what outcome did I want etc.

So I told them I wanted each individual issue, assessed, defined, diagnosed if necessary with the correct implimentations and advice on each issue to help US help our DS.

Listed my and other proffs concerns and politely requested a second opinion to finally end the diagnosis road for good so we can concentrate as a family on the future.

Try using that sort of chat up line :)

Tests/assessments done for DS were:

Clinical Psychology Report...based on..

Cognitive functioning (Wechsler Abbreviated Scale of Intelligence (WASI)

Educational Attainment Skills (Wechsler Individual Achievement Test (WAIT-IIuk)

During these tests his Language was observed and Social Interaction was observed ie wether his tone was flat, fabrication of events, repetitive words, phrases, if he used his own etc. If he was cooperative in the assessment, social, nervous, asked for assistance etc.

Ability to attain attention
Activity Levels
Impulse Control
Handedness (right or left)
Tics/Mannerisms/sensory sensitivities
Mood/Affect

Then an overall assessment results and recommendations

He also had:
Speech & Lang Assessment
All past assessments were considered
Austism Diagnostic Interview (This takes hours and is very indepth) usually refer to childs behaviour between the ages of 4/5.
ADOS (module 3)
Social Communication Questionaire (SCQ)
Development & Wellbeing Assessment (DAWBA) Hours to fill in online/school also do their bit but dont see yours)
Strengths & Difficulties Questionaire
Conners #3

List all this and say it would be constructively cheaper for them to do a thourough overall assessment once and for all so that you and DS can move on in life or spend the next 10 years in the "system".

Sensory Integrationwise

Need to complete Senory Profile Questionaire
Assess by OT
Visit to school and home
OT needs to do a Teacher sensory profile with school
OT needs to do a Parent sensory profile with you

Dont know if this helps or hinders. Off out for a bit x

Can you ask to chair the meeting, have an agenda and make sure it's kept on track that way? A good chair moves things on if people start chatting or going off the point etc. Keep bringing it back to the agenda. Have a written purpose or desired outcome for the meeting. Have someone trustworthy to take minutes, a friend/relative or friendly professional so you can concentrate on the content.

For the first time in 4 years a multi-displinary meeting was constructive peeps - talk about pass the smelling salts. Focused on helping my kid instead of blaming my parenting - it's gonna take me WEEKS to recover! As I'd honestly long given up hope such a thing was possible.

A month shy of his 8th Birthday DS has a diagnosis - ASD (quell suprise there!). Considering I first started asking if others thought he was a bit "odd" when he was 2 and really fighting for a diagnositic assessment at 4, it's taken a while .

The Guys bod clearly explained that he's wired differently & that nothing can change that.

Agreement on referral to sleep clinic. Agreement that ASD OT should assess him.

Transition plan into year 4 agreed and I even got a chance to thank his truly gifted & amazing class teacher for his efforts to engage my son with education this year.

Only slightly sour note is that his reading is assessed as having moved from 1c to 1 A this year - so still VERY behind, but hopefully the ASD OT and private behavioral optremtrist will be able to help him close the gap with his peers in year 4. The HT has agreed to I can take him out of school once a month to take him to the optremitrist next year (in the past I've had grief from the attendance people for legitimate NHS appointments). I have 3 years left of primary ed time to help him catch up so am optimistic he'll now be able to fulfill his full potential (whatever that may be - not expecting miracles).

It's taken 4 years, a SS investigation, an expulsion, 3 schools & one behavioral unit & a tribunal to get to this point. We were on course to have all the Tribunal won support whipped away at the very 1st annual review by an unsympathetic LA - I no longer fear this. So all I can say to other parents is DO NOT STOP TRYING TO GET OTHERS TO DO RIGHT BY YOUR KID - no matter the mud slung along the way.

Oh Bochead

I am soooo pleased for you I cant put it into words. :)

What a great determined Mum you are x

Brilliant news.

well done

Give them a star

. So nice to hear good news.