Living on Planet Poor...rant, no need to respond!

[Eloise73]

I sometimes think we are the poorest working people in Surrey. I have spent the last week since finding out DD is autistic ringing around trying to find out about early interventions and getting her the help she needs since we were told that most things she needs on the NHS have huge waiting lists. Shocking...

So I ring the charity PEACH this morning to find out about ABA and say, right from the start, I cannot afford a £20k programme a year, we are not bankers etc, we earn slightly over the national average which, in Surrey, if you're not on benefits, is not a lot. We don't own a house we can sell, our savings are minimal and of course will all go towards our daughter's treatments, and we're lucky enough to have jobs given the massive culls in our firms over the last 2-3 years.

So the woman at PEACH tells me that its entirely possible to fund a programme for around £7-8k if you do a lot of its yourself...ok...where do I find £7k?! Seriously? It was just deflating :(

I'm already starting to feel a bit like we take 3 steps forward and 2 steps back, a lot of effort and not a lot to show for it. Am so very hopeful the Intensive Interaction we'll be doing with Gina Davies will be enough for now for DD. It breaks my heart that we can't just jump in and get her everything she needs.

I just feeling like having a huge whinge and small pity party this morning :(

ooh, blimey, mega x-posting going on!

Interesting Silver.
Are they taking data on this?
Baseline assessment?
Defining target behaviours and frequency of occurence?
That would really let you pin it down to the SIT.

Re visits, I was thinking you were intially talking about a 1 hour in/out job, hence surprise.

Well Star, if you trust her and have evidence in front of you, then that is good enough. Actually I know some really good people who aren't BCBA and who don't plan to be because it costs a fortune-£30 for an hour of supervision and you need 50 hours of supervision before you can take exam.

However, as a rule of thumb I would advise people to go BCBA route not least because it involves a vast amount of work on morals and ethics-vital in a field often unfairly acused of being controlling and manipulating.

I think it is despicable that peopel have to ppay other BCBAs for supervision (and many of them are already earning crap money, maybe £10 an hour with no insurance, holidays or pension for a very demanding job).

In my work (SALT) supervising students is generally written into our job description and considered a moral obligation.

I must add however that my own supervisor ( a brillaint charming talented world reknowned academic) supervises me and many other people for free as he sees it as his moral duty so that we can have a critical mass of BCBAs.

My own work is very heavily regulated in every way but in the actual quality of the work you do which I find odd.
I often say however that this means you will never come across a bad SALT though. Ineffectual, lazy, misguided perhaps, but not bad to the bone and it does seem to me too that there have been some bad 'behaviour analysts' preying on desperate people which is despicable and has damaged the profession.

yes, he is taking data on targets - for the OT side (fine motor skills) and he also gets to see the listening side due to playing different games.

he has video footage every session, of how dd1 is managing the equipment now.

we continue to see results, in all areas of motor skills and confidence.

previously, dd1 was very keen on going to playgrounds (sensory seeking - loves eg rollercoasters, helter skelters etc), but despite enjoying the equipment, even at normal playgorunds, could not access without steadying help and being talked through it ("ok, right foot here, hold on with 2 hands, step up, then move your hand, climbing, other foot, brilliant, well done!" to get up 3 steps to a slide - that kind of thing.)

within a month of her starting SI, we went for drinks at dh's boss' house. they have a trampoline and old swing/slide set in their garden (dd1 never been there before, and when we arrived they had been taking their dog away (dd1 phobic), so she was not the most relaxed she has ever been)

she went straight over, climbed on to the trampoline (the movement would have freaked her before, and trampolining not part of her SI) and bounced around.

got off herself ( at the ability to climb down a ladder backwards) and went over to the swing set. wanted to go in the boat swing. took hold of the 2 ropes, as a "normal" child woudl. put one foot in. the swing started moving away as she tried to lift her second foot. I was, by now, expecting fear and withdrawal, and tantrums because she wanted to go on the swing.

she laughed, said "silly swing" and tried again. same happened. she walked alongside, trying, then looked over and said "help, please, I want to swing"

it was just all so natural

(dd1 has had no other OT input. obviously some of her ABA tasks are Ot inspired, but at this point there was no other real motor planning/OT stuff going on)

That sounds great.
Should be written up and sent off to a professional journal.
Increase the evidence base.

oh, no doubt he will be doing so.

he is mad keen (understandably) to try to lift SI out of the realm of "hmm, looks like softplay to me" to proper, evidence based, accepted and respected therapy.

he is always off presenting to one conference or another, and I think he was a bit gutted to not have the opportunity to present at dd1's tribunal (LA settled well before) and try for SI written into statement!

I was at ABA International conference in Texas earleir this year and attended an interesting symposium on SIT, which was a major review of field. Message was that evidence was poor.

I was sitting next to an OT who expressed real disappointment at this but acknowledged that the OT community needed to get a better evidence base to get this stuff taken seriously.

I am interested in this stuff-currently working with a very good OT on improving data collection techniques.
Also incorporating composite skills needs for fine motor tasks into branch of ABA known as the 'Big Six plus six' and Precision Teaching. We kick off in a few weeks and are awaiting the results with real excitement.

Sounds good.

I am currently fond of the question
'Is that a fact or an opinion?'

Gets people spluttering.

The issue is of course that world of SN bulging at the seams with people who all have opinions and little else.

I know how you feel. when DD2 last saw we were told she would benifit from a place at a specila preschool but at £28 a session and minium of 2 sessions a week we were a little but there is no funding at all, nothing, have tried everything so instead I have to send her to a normal preschool which is already giving me hassle :(

Also had to laugh at doc who said "well you can fund it with DLA", well yes I could if they would give it to me without a 9 month fight

MoonDog - I'm suprised to hear that Sensory Integration Treatment is in anyway controversial, as I got 4 sessions on the NHS without even knowing what it was or asking for it.

It definately helped DS and I will probably be paying for more privately in the future.

Blimey Indigo - where do you live?!

I couldn't even get basic OT for dd1, let alone new-fangled SI, which is why we had the assessment with a view to getting it on her statement.

Indgo, it is controversial to people who seek evidence. That doesn't necessarily mean that the NHS or LEA only fund interventions for which there is a strong evidence base.

In many cases, nothing could be further from the truth.

Textbooks, educational programmes, complementary therapy, music therapy (which I hasten to add I am personally a big fan of)...they are all things with very little evidence behind them.

moondog - do you know of any good music teaching (as in instrument learning, or even to read music) methods/programmes/tutors/whatever?

dd1 is very musical, but whenever we have looked into music therapy for her, it has always been of the "oh yes, great, good rattle shaking" variety, rather than anything possibly more useful for her. she is slowly learning simple nursery rhymes on a keyboard at school, but wondered whether you'd come across anythign more structured?

Starlight - dd1 attends Tumbletots with one of her tutors form school.

It has been great for all the things you say (is the same group I took her to as a baby/toddler, so they are well chuffed to see her progress too)

Has been brilliant, since the SI, to see her really approaching the equipment with confidence too.

Oh loads of SL/T is practiced with little evidence as freely admitted by top fold in field (eg Professor James Law).

I have a basic model I use for EBP.

Phase 1 is proper experimental work, aimed at building an evidence base.

Phase 2 is using evidence based (ie already proven) procedures) practice.

Phase 3 is continuing to do what you would do normally but ensuring you use proper data collection, have a baseline, run post-tests and so on.

I do mostly 2 and 3 as although I do carry out research I am a practitioner and need to get down to business.

I think Music Therapy is fab and very powerful at initiating and maintaining meaningful communication. It's contingencies of reinforcement in their purest form. I run a (separate) private business with a music therapist and a musician which is doing really well. But MTs don't take data which is such a shame as if they did they would very easily build up a powerful evidence base for thier profession.
This is something I am working on now.

Silver, that may be why MT has disappointed you,.It's not about learning how to create music, it is more about using music as a means of communication. Like the beer, it gets to parts that speech cannot reach. it really does. I have seen it happen many many times and it is an incredibly powerful medium.

It just needs to get more sciency and less airy fairly.

yes, i can see what you are saying, moondog.

BUT

dd1, even with ABA behind her, still is very shy and hesitant.

and thus we get a situation where the MT thinks that dd1 even glancing towards a rattle is good progress.

and i don't think that level of shyness is somethign that will ever leave dd1 entirely.

I am grade 8 in 3 different instruments, and yet I would still freeze if someone wanted me to do improv stuff.

sometimes, that freeflow stuff is really not what people need

totally agree with music getting to the bits that other therapies don't reach - dd1 clearly gets so much form it. but she needs that slitghtly more structured approach (just as she does for just about everyhting she does, hence ABA working so well for her) to even be able to start doing it.

when faced with the wishy-washy, encouraging, freeflow-ness of MT as we have experienced it, she switches off, unable to do anyhting.

It's not structured enoguh for her then.

My own dd (who has communication issues) is very shy too.
I freely admit to avoiding any labelling or pathologising of behaviour which would require a 'therapy' or an 'intervention'. I just try and think logically.

The kids horseride as I like the idea of clear instructions and a definite right/wrong way of doing things.
We swim and walk a lot.
I am about to send them to martial arts classss as I think again that the group instruction and expectations to work together and to have discipline will be good for them.

Will see how it goes.

I keep on saying it and don't have time to explain it fully, but the form of ABA that I have seen make a mammoth amount of difference to my own child and many others, is called Precision Teaching.

Yes, exactly, md, which is why I was asking whether you'd come across any other structured methods for music that you rated.