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I feel sick. TAC meeting next week, and they all know.........

(31 Posts)
MoonlightMcKenzie Tue 06-Oct-09 20:16:30

that I'm blimmin serious about ABA.

I'm taking my DH and my Mum. There will be the chocolate teapot SALT that smiles a lot but doesn't get it (on the verge of a formal complaint if she doesn't correct the lies in her report), an argumentative stressed out EP, an Autism playworker (who's boss I am going to request is removed from our case), the poor well-meaning pre-school leader, a SEN Officer that I have never met or spoken to and my fed up with me keyworker.

Actually, it doesn't seem so bad when I list them like that.

But, - I still feel sick.

Guess I need to plan carefully and take control. If I can psych myself up to be a bit cross before I go in I might just manage. I want to make sure they are clear that I am in the 1/5 who will go through to a threatened tribunal, without falling apart. On the other hand, because that is definately where I am heading, - the meeting is a bit irrelevant I suppose, and so nothing to be frightened of. After all, it will only be the 'deliverers' there, not the decision-makers.

So, why am I in such a tizz?

sickofsocalledexperts Tue 06-Oct-09 20:31:35

I find it helps me to have the key bullet points I definitely want to get across on a paper in front of me, in case the adrenaline makes me forget. I also find that being totally courteous but with a hint of icy steel works well - "of course I would prefer that we all work together amicably on this, so that we can meet DS's needs, but I must make clear that I am absolutely convinced that ABA is the most suitable (jargon legal word) method of educating DS and meeting his particular special educational needs. ABA is also the only methodology with any robust research to back up its effectiveness, unlike TEACCH. I'm sure you are all aware of the University of Southampton study." Try not to threaten overtly, but keep it subtle yet clear. You want to come across as "nightmare opponent from hell", but not "nutter who has been brainwashed by ABA-ers". Once you have your bullet points, work out what they might throw at you and note down your rebuttal (eg will they say you haven't tried TEACCH, or that their local ASD school is fab, or something like that. Or will they throw the expense card in, to which you smile sweetly and say you thought the law required that they meet DS's indiviual SEN, not recommend a blanket approach to all ASD kids). Once you've done that, forget about it till it comes up. I don't like conflict much, but I always pep-talk myself before these meetings thus: it does not matter what anyone in this meeting does or does not think of me, the only thing that matters is getting DS the right education, these people round the table won't even remember his name when he is 18, I am the only person in the room who genuninely has his interests at heart, and since he cannot stick up for himself, I will be the feistiest mother there ever was in order to win him his rightful education." Yes, I've had a lot of these meetings and a lot of time to think about them! Good luck!

anonandlikeit Tue 06-Oct-09 20:35:53

Breath in..1, 2, 3 & out 1, 2, 3.
Sounds like you have it all under control, just be calm, confident & clear about what you want.

Good luck

anonandlikeit Tue 06-Oct-09 20:38:18

& what sickof said grin

MoonlightMcKenzie Tue 06-Oct-09 21:07:10

Thanks. It doesn't really matter what is said I suppose. As long as I don't say anything silly like 'yes, I can see how far ds has come since your involvement', then I s'pose we'll just have to part with me saying 'thank you for your efforts, but I quite convinced that nothing you are offering currently will meet my ds' needs. I stand by me belief that ABA is the only suitable, appropriate and cost-effective provision'.

SEN officer read to me over the phone the likely SALT section. It even made her laugh when I pointed out that the high numbers actually meant nothing.

Do they really think that I'm going to accept anything that starts with 'we will offer up to x' and then goes on to say that x will comprise of a whole list of things to include liason and report writing, meeting attendence etc. Do they think I'm stupid? It would appear to only leave 2 minutes a year for input for my ds.

moondog Tue 06-Oct-09 21:14:26

Please don't say things like 'I believe' and 'I feel' and 'I would like'.It's so female and supplicating. State everything as opinion.

Opinion is irrelevant. What is important is data driven evidence based practice and only ABA comes up to that. Use this phrase over and over again.

Also stuff like 'the vast body of research demonstrates that'.

If people talk about 'feelings' or 'opinions' say 'This is not relevant to the discussion. The only relevant issue is whether the intervention being offered is data driven and evidence based.

Dress smartly, take your time, nice pen and paper, get them to write down names addresses titles while you compose yourself, someone there with you, all the things I told you about. Stay cool calm adn polite. You don't need to persuade them remember, you are the customer and they the servide provider and you know that what they offer doesn't come up to scratch.

I'll be there with you in spirit, squeezing your hand. smile

moondog Tue 06-Oct-09 21:15:04

State everything as opinion.

Sorry, I mean, state everything as FACT!!!!!

moondog Tue 06-Oct-09 21:16:38

And don't agree to anything in the meeting. You just repeat 'We will discuss this with our legal representatives' (they don't need ot know they don't exist Yet.)

MoonlightMcKenzie Tue 06-Oct-09 21:41:06

Thanks for the pep talk moondog. I'm sure it will be alright. It's probably only going to be just another one of those useless meetings that you have with people who don't have enough power to answer your questions let alone do anything about them.

I'll learn those phrases by heart though and you're right, I don't believe anything I don't already KNOW, so may as well tell them that.

daisy5678 Tue 06-Oct-09 21:47:32

I think that you have all the evidence backing you and you, and they, know that they're offering shit.

The only obstacle I can see is that they will say 'you don't know that ABA will be effective cos you haven't tried it'. If you could get that started, it would massively help, because currently, you're in the same position as them: saying that your way will work without any evidence specific to ds that it will work, because you haven't tried.

But they also told me that J didn't need a Statement cos he hadn't been at school yet so I didn't know if it would be as bad at school...they soon gave that one up when the Tribunal application got filled in! It may be that they will do what you want because they see you're serious.

MoonlightMcKenzie Tue 06-Oct-09 21:56:53

givemesleep They don't KNOW whether we have tried it or not, such has been the hash of their partnership with parents. Whenever I try to explain something that we have been working on at home it is always instantly dismissed by the 'experts' and they switch off determined to do things their way.

They also told me that ds wouldn't need a statement because he was 'getting everything'.

ha ha ha ha ha

We are starting with a 'provider' in the next couple of weeks btw.

daisy5678 Tue 06-Oct-09 21:59:14

Brilliant - well, if it proves as effective as ABA evidence demonstrates it is for most ASD children, they are screwed!

AttilaTheMeerkat Wed 07-Oct-09 07:39:56

Will be there in spirit as well.

Plan carefully and take charge.

State everything as fact as Moondog says and talk both calmly and concisely. This is the way to go, its an approach that has worked well for us when its come to meeting with the LEA and the separately held annual reviews.

Good luck, go get 'em!!.

Never forget that you are your childs' best - and only - advocates!!!.

MoonlightMcKenzie Wed 07-Oct-09 11:28:21

TBH, the more I think about it, the less intimidated I am, and the more cross I am. The list of people attending can do nothing for my ds, will not be able to answer my questions and cannot make any decisions, - so, - it is really just a blardy admin exercise isn't it?

I'll probably be asked to sign that we had a TAC meeting.

grumpyoldeeyore Wed 07-Oct-09 12:19:28

We have ours next week too! In similar position but started ABA and his language is just coming along brilliantly and so far they can't claim credit as not done anything for DS yet. I went to the PLAY project seminar on Monday (based on Floortime) although its a different approach (social rather than behavioural) in effect they are saying the same thing - intensity matters. If you look on the PLAY project website have details of their pilot study etc - says 25 hours a week whichever model you use (USA National Council recommendation for 25 hours). Interestingly PLAY guy moved from Pittsburg where parents sued and got 40 hours a week ABA and he (a paed) prescribed 40 hours ABA a week for several years and said that the kids did mostly get a lot better - he then moved to Michigan where no services - and started using Floortime approach as ABA not affordable. They train parents (but have ongoing consultants every 6 weeks and critique video of parents playing etc) so sort of a very enhanced portage service and following Greenspan's developmental model so targeted play activities etc. Sorry rambling but my point is that whichever approach you use: ABA / Floortime / RDI they all say 3+ hours a day / 25 hours a week. Even if parents are to do the hours they need proper training and supervision for children to make progress. Said lots of grants just given out in US to try and build evidence for Floortime- he was pro ABA but felt unaffordable and his PLAY project is $4k a year rather than $40k a year and will he hopes prove similar results. He also said lots of parents do both ABA and PLAY/ Floortime - the PLAY is literally playing - accepted that you might need other approaches (formal speech therapy / ABA) to do formal teaching of skills. PLAY is to build social skills and language. So although I agree ABA has the most evidence (and is all that is available in my part of UK) you can say that other approaches where evidence being carried out still start with the same premise that 20+ hours a week is necessary to make progress, has to be 1:1 to start and group work later, with input from highly trained staff (my Autism outreach teacher unfortunately does not meet this criteria - she only knows about turn taking, blowing bubbles and visual timetables). If you can talk about other models you can show that you are open minded but say the key elements are the same: intensity / staff quality / 1:1. He was also positive about TEACCH but as a way of changing the environment not changing the child - ie I think of TEACCH as the equivalent of building a ramp and widening doors if you had an accident and were in a wheelchair - it makes the environment more accessible - but if the person had the capacity to walk again they would need physio / rehab etc as well. Changing the environment will make life easier but won't help them improve. There is a woman in London doing this PLAY project (Mindbuilders website) + Catherine Aldred in Manchester also researching a parent teaching model using video etc with tutor support monthly- although her project only involved 30 mins play a day. The point is that ANY of these models all include elements which LEA provision does not - 1:1, high quality professionals, coaching / training of parents, lots of hours etc. So LEA's are totally out of step with current thinking.

MoonlightMcKenzie Wed 07-Oct-09 12:30:27

pmsl at turn-taking, blowing bubbes and visual timetables. They are the bane of my life, - not because they are rubbish, but because they are ds's lifetime targets it would seem.

Let's fact it though, - what child wouldn't do better on 20hours plus of dedicated, planned, considered provision. The thing is that children with autism are more in need because without it they won't 'get by' they will stall.

ABA is where the years of evidence lie, so that is really the only approach that will win a tribunal.

MY LEA have the cheek to tell me that they come into to teach ME how to blow bubbles for 1 hour a week and then I can continue it on for another 19 hours at home, - that way ds gets his 20 hours. Fine, if they pay for full-time childcare for my 1yr old.

Although, - actually it isn't really fine is it.

moondog Wed 07-Oct-09 19:26:44

How did you get on Moonlight?

Re this

'what child wouldn't do better on 20hours plus of dedicated, planned, considered provision'.

Very true and ABA never claims to be magic, it just is exactly this.

MoonlightMcKenzie Wed 07-Oct-09 20:18:57

tis next week. looks like it isn't going ahead now. complicated reasons. Ed psych making me choose between her time at tac and her time doing a cognitive assessment which we need, and I want to be at the cognitive assessment. Given that no-one will be able to help us at the tac, don't see the point of the sacrafice.

moondog Wed 07-Oct-09 23:31:51

Eh? Sounds a bit off.
Ask her to put in in writing.

MoonlightMcKenzie Thu 08-Oct-09 13:08:49

Oh FFS

Over a month ago, when I knew that almost ALL the professionals were meeting for a secret meeting before the diagnosis I put two questions to ALL of them. I asked for a written response to

1)What benefits or outcomes has your involvement brought ds so far? My perception is none.

2) If you think there have been any, how do you know?

I got a verbal reply from my key worker saying that they could answer because it was a multi-agency approach so nothing could be pinpointed. I asked them to 'try' or give me written collective response, so they said they would explain it to me at the TAC. However, I said that I didn't want the whole world at the tac, only those who can focus on education, because an hour and half isn't enough.

So, - I get a letter from my keyworker today telling me that coz I have chosen for not all professionals to attend, then they are the only ones that can answer my question and that it is up to me to contact the others following the meeting if I would still like their responses.

So, - do I need legal advice with this now. They are implying, - well all kinds of rubbish and smokescreening and causing a huge circus over nothing and I'm a bit confused myself to be honest.

So, - this TAC I was going to cancel I suppose has to go ahead, otherwise I look like I am messing around. And I'll have to write an email to the Ed Psych with what she has done and how disappointed I am with it.

What the feck is a multi-agency response anyway if I put a question to them at a collective meeting and am subsequently told if I REALLY want an answer I will contact them all individually? And why the feck isn't it my keyworker's job to do that, if it needs to be done?

It has been over a month since I asked the question too.

And what is worse, my DH has just phoned me to tell me he has a work committment that he can't get out of that he forgot about and won't be coming to the TAC.

MoonlightMcKenzie Thu 08-Oct-09 13:22:06

If it isn't one thing it is another. Just begged for and eventually got a copy of appendix B (educational advice) from the LA and it says that the National Curriculum will need to be modified in pace and progress for ds.

NO, it will need to be modified yes, but I expect pace and progress to be according to his capabilities which, should the ed pscyh ever get around to doing her cognitive assessment should turn out to be high.

moondog Thu 08-Oct-09 17:16:48

Don't get bogged dow nin irrelevancies, like fighting over NC wording (same blurb for everynoe anyway).

I'd do exactly as she says for the otherl ot (chase them up). Please stop using supplicating 'female' language though, all this 'trying''thinking' and 'perception'

Just be factual.
What have you done?
How could it be measured and was it?
Was there measurable benefit/progress?

MoonlightMcKenzie Thu 08-Oct-09 17:46:48

Yeah, get ya. Agree about the wording and you mentioned it before, but I asked these questions a MONTH ago specifically, after having asked them in every other way prior, so they are recorded in this unsatisfactory way, - but I'll move them onto more factual wording if/when I get the opportunity.

Not my strong point though. Luckily they can't even answer my wooly questions.

nappyaddict Wed 14-Oct-09 00:19:15

Moonlight Hope you get some answers.

Just wanted to know if you'd read this

nappyaddict Wed 14-Oct-09 00:50:33

Also have you thought of asking to see a dietician to help you do the GFCFSF diet? We are thinking of doing it but still allowing dairy as long as it is made from Guernsey milk. There has been some research that ASD children don't react to the protein in Guernsey milk like they do to the protein in all other milk. I know you can get butter, cheese, cream, milk, yoghurt and ice cream all made from Guernsey milk but not sure how available there are. He tried the M&S fairtrade dark chocolate today and the Sainbury's Taste the Difference dark chocolate which is dairy and soy free and didn't seem to mind the change.

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