Please or to access all these features

SN children

Here are some suggested organisations that offer expert advice on special needs.

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

101 replies

Eloise73 · 20/08/2010 12:54

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 :(

OP posts:
willowthecat · 21/08/2010 11:22

That is the standard answer when you challenge them - I have heard that one too and yes they are right. what they offer will not make any difference ! It annoys me that they get allocated public money to work with ASD children when they know less than my cat !

Lougle · 21/08/2010 11:28

Maybe I am naive, but in that case, what about someone teaching the parents how to do the work?

I agree that the SALT my DD1 had was a waste of resources. Not because her problems are non-existent. She has severe delay in both expressive speech and receptive language, severe delay in speech clarity, and word-finding problems, and so on.

However, her SALT sessions, which only materialised because I complained about the quality of the SALT, were completely ineffective. An hour at a time of trying to keep DD1 at a table, doing 'book' work, when the room was filled with interesting things that would have engaged DD1. It was only at the last session that I finally said 'what about if you do one thing you want to do, then let DD1 choose one thing', because the SALT was getting nowhere fast.

I would have gladly listened and learned what to do if someone had offered that. I have been asking for 2 years.

The thing is that language and speech development in NT children is just effortless. I say 'frog' to my 16 month old, there is a pause, and she says 'frog'. She is picking up several words every day. She is picking up Makaton beautifully too. She signs and says 'please', 'thank you', 'sorry', 'all gone', 'juice', 'hungry', 'more', 'yes'. She says two word familiar phrases 'do again', 'get down', 'help please' and lots of single words.

But language acquisition and speech development just isn't like that for DD1. She relies on learned phrases. She sounds like a (slightly bizarre) mini-adult. I haven't had any guidance about what will work with her, and everyone I see has a different opinion (use PECS, no use Makaton, no just keep modeling good language, etc.)

I can see it must be frustrating from a SALT's perspective, but for many parents, the experience is that we are left floundering, knowing that the SALT is a waste of time, but not having an alternative.

moondog · 21/08/2010 11:32

Star, sadly there are many many people who will not help themselves.
Even after 15++ years in the job it still absolutely astounds me how little some people will do. However I think a lot of that might be to do with the fact that many parents just offered vague advice which can't be monitored or measured (same goes for advice to teachers) so everyone gets frustrated.

I don't think most SALTs, with the best will in the world, have a lot to offer kids with ASD. This is because they don't understand principles of behaviour and reinforcement.

You get a lot of kids who are indeed offered a lot of different intervention and whose parents are busy busy busy, scurrying from one appointment to the next but so much of it is very poor quality and makes no difference whatsoever.

So many people fall into the trap of thinknig them ore people involved the better but I find the opposite is true. If I were a parent receiving state intervention, I would have as few people as possible involved. I accept that this is easy for me to say as I know this field like the back of my hand adn not so easy for very anxious parents depserate to ensure thier child doesn't mss out on the one thing that might make a difference.

moondog · 21/08/2010 11:35

Yes Lougle.
Perfect example.

The other issue is a SALTs caseload covers so many things=delay, disorder, selective mutism, hearing impairment, stammer, bilingual issues, cochlear implants, augmentative communication. List goes on and on and on.

They just don't know it all.

A lot of my colleagues work with stroke patients. I wouldn't have the faintest idea what to do with one having only had limited experience years ago.

And yes, so many opinion many of which are just plucked out of thin air.

Lougle · 21/08/2010 11:49

Actually I can't wait for DD1 to start special school. The SALT is coming out to meet her next week. The SALTs (whose offices are based at the SS) devise programmes and groups, then the school do them as part of the whole school day.

I (and DD1's consultant) have been saying that DD1's speech is disordered for the last 2 years. Her SALT has been saying that she thinks it is just delayed. There is no point arguing about it. Her statement report says 'no specific concerns about clarity'. When pushed her SALT said 'well I meant that given she has a severe S&L delay, it's not surprising that no-one can understand her without you interpreting'. Doesn't read quite the same does it?

But I am hopeful that when DD1 is seen in a whole school environment, and they can see the impact of her S&L on everyday activities, she will start to get the help she really needs, and I will get the guidance I need to make a difference at home.

Anyhow...precision teaching. I am going to google. I take it it isn't too dissimilar to the principals of Tagteach, Moondog?

moondog · 21/08/2010 13:37

It's really rather different Lougle.TAG is easy to grasp whereas Precision Teaching has at its heart a measuring system that never changes, whatever you are measuring (be it sounds uttered, mands used, cigarettes smoked, kms run . So no time is wasted on explaining different measurement systems which is great.
You tae data using an SCC, show it to the supervisor who, in less than a minute can take in al lthat has been happening and recommend changes (if necesary). It is fantastic.

However, latest thing is to combine TAG and PT which I have been doing for a while so at last ABA internatinal conference I was thrilled to bits to attend presentations where others were doing it.

I have been invited to present on this very topic next year at Seattle so we need to get the data together from next term.

Lougle · 21/08/2010 17:53

So I take it you are looking at trends and shifts/anomalies to make modifications to your programmes, rather than absolutes?

So some things will inherently take longer than another, so you will see the progress as relative to that activity, but the trend will still be evident.

moondog · 21/08/2010 18:03

Yes, the 'precision' part refers to the fact that you are checking data every day and adjusting accordingly. It is very fine tuned.

The time factor is essential-this is what is known as rate. We nee ot get target behaviours fluent (ie automatic). We know that fluent behaviour is more stable, more flexible and more easily retained.

Rate was Skinner's (and subsequently Ogden Lindsley) big thing. It is neglected by most professionals who tend to look at 5 only.

But this doesn't give you nearly enoguh detail. If you get 90% in an assessment as do I, the fact that you may have taken 10 mins to di it while I took 25 is basically ignored yet it is hugely important.

I am not really interested in any data unless I know in what time frame it has happened anymore because without it it doesn't give me the whole story and that's what data does-tells the story. of what is happening.

moondog · 21/08/2010 18:04

'professionals who tend to look at 5 only.'

Sorry, that 5 should read % obviously.

Lougle · 21/08/2010 19:05

I am finding this hugely interesting. I did an online IQ test last week for fun, and scored highly, which wasn't a great surprise, as I was tested at age 2 and scored very highly then. But the years of being at home with CBeebies have had their effects. Puzzles that would have taken my 5 minutes 5 years ago can take 10-15 now; my mind is out of practice. I took a 'Giga' 6 minute IQ test a few days ago, and my supposed 'IQ' dropped a whole 21 points. Just because of the time factor. Of course it makes a difference.

My brother went to a job interview at a traffic management company. He was asked to write an algorithm to make a certain set of traffic lights function in a certain order (he is a computer programmer). He sat, thought for a minute or two, then wrote one single line of code. He got the job. His interviewers later told him that every other candidate had taken very much longer and written a page of code.

I do have a question though. I presume that to undertake precision teaching, you have to have a co-operative student, who can (if the conditions are right) actually master the skill you are teaching. Is that where ABA comes in? Right now DD1's attention span for 'less-prefered adult directed tasks' is less than 2 minutes. Now if precision teaching includes some instruction time, you would have lost DD1 before you started Confused

moondog · 21/08/2010 19:21

Most Precision Teaching tasks are done and dusted in a minute-sometimes even less (I've owrked o 20 second slices with some kids who couldn't cope with much more to begin with. That's why it's so great.)

So for example, I have worked on or am working on...

Naming objects

Naming people (from photos-worked really well with one child who was so passive and never initiated communication, probably because she didn't have anyone's name to use. We starte small with 20 second slices and worked up. She now knows the name of about 16 people in her environment and uses them a lot-initiation and intercation has gone right up and in turn people interact with her a lot more. It's lovely.)

Telling time

Timestables

Coin recognition

OT style tasks (component skills for fine motor control)

Number recognition

Letter recognition

Word recognition

Phonological work (ie pronouncing sounds in certain combinations correctly)

Letter formation

Cursive writing

Roadsign recognition

Parts of animal recognition (for Riding for Disabled quiz)

Technical literary terms

ABA definitions

It's not specifically a method for people with SN-it can be used for anyone with anything-that's the beauty of it.

Lougle · 21/08/2010 19:26

I am going to read - it sounds fantastic. Your passion certainly comes across in your posts about it.

moondog · 21/08/2010 19:26

Meant to say that your examples are interesting and also that even the most challenging child can usually cope with half a minute. The time length to wor is made explicit with a timer or other visual aid. They know that when they have finished, they can clear off and you are happy as you have squeezed tonnes into a few minutes.

Working for long periods of time is soul destroying for everyone and with most kids you will find that peopel are calling them to do table top activities but the kid has no idea how long they are going* to be there for.

Factor in language difficulties which make verbal explanations or requests for clarification on their part hard to communicate and it's no wonder many try to run away or slither under the table. I would do the same.

My dd knows that her PT activities will take 15 mins max. I set the Timetimer and if it stops before we are finished I honour the Timetimer. But, that never happens.

moondog · 21/08/2010 19:28

I've got some handouts I have wirtten on it explaining it to parents and school staff in pretty clear language.I can pass it on if you like but don't want to give my email on here and am not CATable.

Do you talk to Starlight offline?
She has my email address.

Lougle · 21/08/2010 19:40

Yes, I do a little.

I would love a copy of the handouts, thank you Smile

As long as your email hasn't changed in the last 18 months or so, I have it - you emailed me something some time ago. I will email and if it is the same you'll see it.

moondog · 21/08/2010 19:43

Ok, am in transit back to UK over next few days so shall do so when home safe.
Best go to bed-need to be up to catch my plane in a few hours.
In the meantime, have a Google.
Good night. Smile

Lougle · 21/08/2010 19:45

Great, thank you Smile Sleep well.

AgnesDiPesto · 22/08/2010 09:45

Moondog do you think autism treatment ABA or otherwise should be prescribed by NHS eg developmental paed and taken away from LEAs. It often seems to me the NHS model - duty to do best for patient - evidence based practice- systems for expensive treatments eg £40k cancer drugs Cameron was supporting in election campaign.NICE guideline - if they fund CBT then should fund ABA fits better and we do huge amount of damage by letting admin officers with targets to reduce statements anywhere near our children not to mention the delays they rack up. I doubt the NHS would be perfect but at least they would seek not to be negligent and are used to funding expensive treatment programmes and monitoring effectiveness. For pre school children especially I am not convinced the education system is the right prescription as how many autistic preschoolers even learn in group situations before 5 or 6? It seems bonkers to me my SEN officer had over ruled the EP who supported aba and we have to go to tribunal to get what the LEA EP recommended 10 months ago. In what hospital would the admin officer be allowed to overrule the consultant

HairyMaclary · 22/08/2010 11:41

Moon dog - that prescision teaching sounds just like what I need for my 4 year old DS with CP. His attention span is quite short but I am aware that I need to do mor focussed stuff with him now but am at a loss with how to do it as he does not respond well to table top activities for exactly the reason you are talking about!

My email address is my RL name so I will try ot get in touch with you another way, but any info you have would be great.

With him I feel we have the physical side under control as much as it is ever going to be but eveything else needs help now!

moondog · 25/08/2010 12:49

Agnes, my personal opinion is that the NHS isn't really the right place for school age SALT and other interventions aimed at improving communication. It leads people down a very medical model where a condition is 'diagnosed' like an illness which seems nuts.

Stull like ADHD, or Autism or Dyspraxia isn't like measles or chicken pox or TB but people seem to think of it like that.

Money is limited and we all have to accept that public funds wil lnot be able to provide gold standard treatments for everyone. Even so, it is not unreasonable to expect effective treatment or intervention. Health and Education both are now under huge pressure to use EBP (evidence based practice) which makes me laugh a little in a cynical fashion as I think 'How come this is an issue now and wasn't 5/10/15/20 years ago?'

I don't think the NHS is better at providing EBP than Education, particularly when it comes to the 'therapies' (OT, SALT,Physio). it owuld be fair to say that as a whole these professions are beginning to recognise their weaknesses in these areas and the emphasis on personal opinion of therapist involved as opposed to EBP. Same goes for stuff like complementary therapies, most of which have no evidence based but which have huge sums of public money pumped into them (I'd recommend Ben Goldacre's fantastic and very funny 'Bad Science' if you are interested in this stuff.)

I don't think reducing statements is a bad thing either. They used to be handed out willy nilly and all basically said the smae thing. They cost a lot to put together.
Even getting a statement is no guarantee of the quality of input your child gets in most cases. It may guarantee quantity but that can be meaningless if not effective.
In an ideal worls where neither LEA nor health staff used stuff that wasn't evidence based, we wouldn;t even need statements. We'd just get on with teaching them what they need to know.

moondog · 25/08/2010 12:53

Hairy, i'd be happy to send you some stuff, but need more info than that of email.

Atul Gawande's brilliant and very readable http://www.amazon.co.uk/Checklist-Manifesto-How-Things-Right/dp/0805091742/ref=sr_1_2?ie=UTF8&s=books&qid=1282737049&sr=8-2 The Checklist Manifesto is a brilliant example of how easy, simple and low cost it can be to get things right. I have found this book to be hugely inspirational.

salter · 26/08/2010 14:02

Eloise

I think it might be worth contacting any local universities - many have a volunteer service, and you might get some enthusiastic students keen to learn and gain valuable experience.

I am a student SALT and I regularly volunteer, as do many of my peers. I'm working on an ABA programme at the moment and it is absolutely the best experience I have to date. I also make all the therapy resources, and this is something perhaps volunteers could help with.

Worth a try perhaps?

HairyMaclary · 26/08/2010 16:50

Moondog - I've just sent you a CAT. The link to the book doesn't work, what is the exact title? I'm not having much luck googling!
Thanks

bigcar · 26/08/2010 17:07

hairy here

silverfrog · 07/11/2010 19:49

Bumping for Lenin - there a bit about SI in the middle somewhere (sorry, had forgotten it was so long!)