AIBU to ask at a Team Around the Child meeting?

[MoonlightMcKenzie]

Well it was a secret one pre-CDAC. I asked:

1. What has the benefit of your input been to my ds?

2. How do you know?

I asked for the answers in writing. I submitted the questions a week before.

I wanted the answers, but also to make a point that I'm fed up with people sitting in my living room telling me how many services I am 'getting' but not having seen any benefit from them on my ds.

Today I asked my keyworker when I could expect the answers. She told me that the 'professionals' had said that they questions weren't answerable because no-one would be able to pin-point what of the benefits to ds were as a direct result of their service, given that they work in a multidisciplinary way.

So, - I've asked could they please all put THAT in writing then, under the two headings.

Grrrrr, I don't suppose the questions are particularly easy (although I could answer them for my own input) but I did give them time and they don't need to be detailed answers.

AIBU?

I heard an ewo talking about TAC meetings and one of the first things she said should be everyone saying their involvement , surely this would give you the opportunity to query it?

The meeting has been and gone. We weren't invited (it was a TAC without parents ).

Questions unanswered.

Involvement doesn't equal outcome. I think I'm making enemies. I think I'm beyond caring.

If it's the only way to get things sorted!

Do you have anyone that is 'friendly' to question others for you?

Yeah, it was supposed to be my keyworker. She put the questions to them.

I wish they'd all get out of my life tbh.

or do what i did and between the next meetings log very phone call, visit and whether it was planned or just bumped into them at school etc. then at next meeting read it to them and say this is why i feel noone is doing anything for my son, you may hink you are but in 3 months two phonecalls has helped him so much hasnt it, please clarify how often everyone should be seing my son and what you do as i feel were getting nowhere and my log shows th lack of contact from certain professionals. this way thy all sat there smuggly thinking it was not them i was referring to but sadly it was most of them. things improved greatly after though as they dont know what i write down etc. plus i did add that i only want whats best for ds and would complain to the people higher up if necessary as he comes first to me!!! is something like that worth a try?

Oh thank goodness meerkat. I'm not completely alone being a pita.

I just can understand why I specifically asked the questions, therefore being particularly important, and yet they all decided between them that my questions were irrelevant and that they needed answer them.

The thing that gets me, is they didn't even attempt a vague answer i.e. it is too early to measure impact but we are confident in our approach because x, y z. i.e. professionalism, experience etc etc.

I just can't understand why I specifically asked the questions, therefore being particularly important, and yet they all decided between them that my questions were irrelevant and that they needent answer them.

Yes log everything , the professionals will(should) be so why not you!

Oh I am logging everything. My log is now 60 pages long , but that is because I phone, not them.

Not unreasonable at all.

as you know, the questions are unaswerable purely because the professionals have not spent enough time with your ds to adequately know his strengths/weaknesses, nor implement any effective intervention, let alone measure any difference as an outcome form the non-existing intervention...

I am off to a review at dd1's school this pm. I will be asking very similar questions. the review is to help the ed psych decide what he will write in his report for statementing, thus will affect school choice for dd1.

we will be asking what the school can point to that dd1 has learnt as a result of her attendance there.

Actual answer is nothing (she has been there for coing up to a year now).

They will bleat on about how she has learnt to comply at group times, how she has learnt the routine of the school day, how she is doing well with eating and toiletting, etc.

She complied with group situations at her ms pre-school, knew the routine of the day/week better than they did (and still does now) eats better at home, and the only toiletting help has been form home. but they will not admit that, and will mutter abut how hard it is to effectively measure learning outcomes in a young autistic child.

Bollocks. since we re-started ABA, dd1 has started talking at school (last term's gem - "you may just have to accept that dd1 will never talk at school. I've seen these things before"); is more engaged with tasks, activiely participates rather than passively led everywhere, and has started saying hello and goodbye appropriately to everyone, even staff who are not her teachers (and who would have said that dd1 didn't know their names).

and that is in 2 weeks, withuot any ABA at school, just a part time programme at home. imagine what she'd be doing if she had effective teaching as well

Look, simply request the minutes from the meetin under FoI request. Or write/phone and say you want to come in and see all the files (ie SALTs, paed.'s and so on). They will be obliged to get them together for you and you can sit and read through them.

If there isn't an entry cross-referencing with your log then they have breached NHS note writing guidelines, and if there is then you will be able to read it.

You are flogging a dead horse in a way asking them what is the benefit as that is subjective.

'Outcome' is a better word-v overused in NHS cisrcles these days.

As for thier answer. It's terrific ammunition in a tribunal.They've shot themselves in the foot. Completely unacceptable!

moondog, you are so right about "outcomes" being overused.

I have spent hours talking around why dd1 wasn't achieving at school pre-ABA re-start.

the one thing that her ed psych kept coming back to was "well, it depends on what you are defining as learning outcomes"

ffs. dd1 is verbal (very), is bright and keen, eager to please and learns well in a 1-to-1 environment. she should have entered yr1 this sept. what I want for her as learning outcomes are not all that far removed form the basic learning outcomes for yr1 (bearing in mind dd1 has a langugae delay, and therefore abstracts and concepts not easy for her) but general learning - reading/writing etc? all within her reach tbh, and we are tackling those at home with ABA.

I agree Silver.
It is incredibly easy to set goals in an ABA programme.

You set the goal, take data as you work on it and when you reach criterion, tick it off list.
Go back to it at regular intervals (aka 'probing') and check it is stable.

a.) What is so hard about that?
b.) Why the hell is this not the way things are done anyway?

As a parent, that's the scary thing about ABA. You kind of think 'Hmmmmm, how come this isn't in place anyway-clear goals and data collection?'.

Madness.

but as you know, moondog, ABA type protocols aren't in place because it is of no benefit to the children to be coached in doing a task in one situation which they then cannot generalise or use in the real world

yet another position I will be defendign this pm...

as dd1's ABA consultant likes to point out, it ain't exactly rocket science.

In my now not inconsiderable experience, I am mystified by this approach.
a. It's nt true. Generalisation is the first aim of any good ABA person. If a skill isn't generalised, what's the point of it being acquired?

b. Adherence to this erroneous view seems to allow the person criticising to defned the currently utterly unacceptable status quo which involves random folk drifting in, setting vague 'goals' and drifting off.

As for argument that ABA is expensive well, words fail me! So it isn't therefore expensive to have horded of people 'involved' with a child, sitting in pointless meetings or writing meaningless documents that assert they are donig something when in fact what most are doing is attneding meetings and writing documents to state the point.

It's positively Kafkaesque.

(On a jollier note, the vast majority of people I deal with, many of whom are public service folk.think ABA is bloody great.)

Hope the review goes well Silver.

oh don't get me started, moondog.

I have now lost count of the number of people involved with dd1 who have seen her programme in place and observed her during tutoring times. without fail thay all sit there and say:

a) it isn't what they were expecting (which, no doubt, was a strict "sit at this desk until you answer me, child, and do not think about moving or breathing, or doing anything at all until you have got it right" approach)

b) regimented, and totally prescribed by the tutor.

our programme (and, I am sure, most others currently in place these days) is more of a general learning through play set up, led equally by dd1 and the tutor (and I mean that dd1 gets to choose some of the "tasks" becasue, shock horror, she actually enjoys them and so is beside herself to be able to choose to do some counting ). everyone mentions how much dd1 enjoys it, and then goes on to say that it is because:

• she is in a familiar place (well, durr, yes, she is familiar with her home. however my mission these days is to get examples of dd1 using skills in other places - thank god for camera phones! I also offer to meet prfoessionals at a place of their choosing that is vaguely child friendly (ie not clinical) so that we can let dd1 run amok show off her skills there. they always decline )

• she is with a familiar person (last week when ed psych visited, she was with a new tutor - had only known her for 2 weeks. whenI mentioned this he was surprised, and then dd1 turned around and demanded to sing with ed psych - his face was a picture!) as he pointed out at the end of his visit, he had more interaction with dd1 than he usually has with either an autistic child, or a language delayed child, or actually most children he comes across. and this was the first time dd1 had been introduced to him. no generalising my arse, quite frankly.

I honestly don't get the problem (aside form lack of funding, but as you say, it's not as though money isn't being spent on dd1 already - she is funded at a private ASD school). dd1's school is, on the face of it, fabulous. they are fantastic at coming up with all sorts of tasks and settings - really incorporate imaginative play into everyhting (they perform a set piece - new action song, or puzzle, whatever really) then get the children to do it, then play it through using playmobile/lego props too. they incorporate food fussiness programmes throughout, and use all sorts of fruits/veg/foods to play with - jelly cubes in water, herbs frozen in ice cubes to melt and smell, peas buried in sand/flour/custrad to discover. some really imaginative stuff.

but it doesn't work for dd1, and rather than look at why (dd1 needs 1 to 1, which they don't agree with unless needed for behaviour situations) they maintain a "maybe it's beyond her abilities/oyu should accept that she won't ever do this at school" approach.

it really makes me

I know. I know.
May the goods work continue.
I sense (no, I know) that there is (as the Scorpions so memorably crooned) a wind of change, not least because the evidence base is now enormous and growing daily.

Moonlight, as it's an "AIBU" question I'm going offer an opinion. You may feel my experience (as a litigator and negotiator) is irrelevant because I work in the commercial arena and this is personal, but what the heck I'll tell you anyway.

I discourage my clients from this sort of approach because it backs the other side into a corner without showing them any kind of escape route. If you back someone into a corner then they will behave like a cornered rat. The more you push someone, the more you must highlight that escape route (which is meeting your son's needs).

Apologies in advance if I've gone too far.

Not at all Linglette.
Really interested in your take on this from a professional point of view.
I agree totally.
From my perspective, Moonlight is offfering an escape rout that will
a. meet her ds's needs
b. free them from her hounding of them

That is funding ABA which has, quite frankly an embarrassingly large evidence base to support its use with children with needs such as his.

Sorry, you aren't asking my opinion! All the lunar allusions are confusing.
(I'm giving it anyway.)

Phew, thanks everyone. It is hard to know you're not going crazy sometimes. The conversation with my keyworker today was her encouraging me to 'select' those working with ds at ground level only to answer the questions. I told her EVERYONE who is involved should answer because if they are offering no benefit, then what is the point of them being involved.

Thanks Linglette. That's an excellent point. I DO have an escape route, but it isn't firmed up in their eyes(I have told them we'd like ABA but they have dismissed it as something silly and never gonna happen). I hope when the realise that I'm serious they'll see the escape route with a sigh of relief and just hand it over

Moondog I'll ask for the record, just as soon as I know it has been written. I don't really want them to write to the audience iyswim.

Just had a unsatisfactory letter from the Autism Service too. I had a list of questions, stemming from an original list of questions. Her response was purely 'I am sorry I am unable to help you any further with this matter'

okay, - they were tricky questions:

How do you decide what provision best meets my child's neds, and how much input does a parent have in this decision?

So now they want another Team around the child meeting, so that I can ask the questions again . Why?

We need another TAC of course but I want to focus on Education moving forward rather than the uselessness of Social Services and Occupational Therapy. They can still answer the questions surely? They've had them now for over 2 weeks.