Me with some ABA issues again...

[staryeyed]

So last time I had the problem with the senior supervisor but now I quite like her. But Im really concerned about the way things are going. Tutor came yesterday and today. Thought she was really good when I interviewed her but she isn't very enthusiastic well not like I was expecting. She didn't do a pairing activity or use anything other then praise as reinforcement. Now I'm feeling really about her. She has had 3 years experience and came very recommended by the supervisor. Nothing has been structured or clearly explained and I feel that we are getting a bit of a thrown together service because of the budget limitations. We had both an ABA session and one with the council project and despite all the complaining I did about the council service at least Ds had fun. He was miserable and unmotivated in his ABA session and I know he needs time to get used to the tutor but I dont think her techniques are up to much.

To be honest I feel like just telling them all to go and curling up with Ds under a blanket. All the services we have used have been substandard except the PECS course which was very good. Im so fed up of professionals telling me what they think the problem is and what he needs to fix it. They dont say "have you tried.." in a helpful way, they say "In my experience its this so you should do this" not taking into account that Ds is an individual not an ASD child and that one solution fits all.

Im really wrestling with my conscience because the money I had saved was intended as a deposit for a house which I had been saving for years. If a year of ABA doesn't get Ds very far that money could have been put to better use by security for our future. But If I dont try, how will I know? The way things are going I feel like calling it quits.

I will speak to both the supervisor and the tutor tomorrow and see if we can sort out some of these things and turn things around but I resent paying for a service that isn't up to scratch.

Just ranting really feel free to ignore. Hooooowever if you do have some advise for me...

You are not in Surrey are you staryeyed, as all my tutors are full of fun and you sound like maybe you just need a word with the supervisor about this one. But it could be just that it will take time to bed in - do you go out and leave them to it? Must admit, that's what I do as a) it gives me a break and b) my DS works better when I'm not there, as othewise he just clings to me. I know how you feel about curlign up under a blanket, in fact that's exactly the kind of day I'm having too, but in my world it's everyone apart from ABA who treats my son like a statistic rather an individual, and after years of paying for a special school (useless) and now a term and a half at mainstream (looking like they don't want him to thrive at all, looking rather like they just want to get rid) the only only good guys who have managed to actually achieve something with my DS are the ABA tutors. I know I sound a bit over the top, but I truly believe my DS would not be speaking, walking, eating with a fork, using a loo, counting, learning letters, stoppinig having tantrums etc etc etc if it weren't for ABA. Maybe you should give it more time, but see if the supervisor could have a word wih the tutor? If you are anywhere near me you could come and watch a session with my DS, to get an idea of how a good tutor would do it? Big hugs anyway!

Thanks for that offer ancientmam- I live in London. All those things you are saying about your ABA programme is what I am expecting. how old is your Ds? I get the feeling I have chosen the wrong providers. There is way to much emphasis on so called play but my Ds can play quite well already. He has no words at all and very little in the way of receptive language. his programme is way too preschool play and not enough language iyswim.

My DS is 4 and we use the program called Verbal Behaviour, which is a subset of ABA and is ALL ABOUT getting my previously non-verbal son to talk! It's also about developing his play skills, but everything they do is about words first and foremost. Why don't you come and see a session with my supervisor, I am in the outskirts of London. Have your tutors mentioned "mands"? These were the absolutely vital first buildign blocks of speech, but must admit that they did not come until 3 months into the program, when my DS had mastered the instruction "do this" and would imitate all sorts of actions (eg clap hands). Then it became quite a natural step to say "do this -juice" and he would attempt to say it. Then he would only get juice if he used the mand (=demand) "ju" or something approximating at the word. Is that what they've talked about with you? My supervisor could advise as well. If of interest, let me know, but don't give up as I really believe the VB program can help non-verbal kids, not all but many.

It doesn't sound right for you t

I seriously have some sort of dream of setting up a charity or social enterprise that would in some way offer teaching in therapies to parents (and any therapists they want to use) at affordable rates.- So offer ABA/RDI/VB. The make money by charging LA's closer to corporate rates (so they're funding the parent training iyswim).

I do have friends who have swapped providers - I don't think that's a problem as such. YOu'll have more idea of what you want now if you do swap. Have you told them what sort of help you need?

Just to say- any program - ABA or VB will focus on compliance then gross motor imitation first, then fine motor etc before speech but they might work on language in other ways (typically 'give me...' for example).

That's interesting yurt. I wasn't aware of that. Is there a reason its in that order?

btw- When you say it doesn't sound right do you mean the providers or ABA itself?

I don't know, but think the theory is that speech is about imitation (at least in the early days) and that imitation is easier to teach in terms of actions first - eg really obvious what you are doing if you are doing a massive clap hands, and if you prompt child to do that, he or she soon gets what "do this" means, which is a a precursor to imitating sounds (I think that's it, but yurt may have more)

I just mean it doesn;t sound that the providers are right for you (every child different etc etc).

You won't learn to speak without imitation. TBHI do think imitation is the biggest most important thing to learn as it alters the way that learning takes place afterwards (and weirdly alters relationships and the child's understanding of relationships). We started ABA at 5, ds1 learned to imitate at 7 and is now 8 - so have plenty of experience pre & post imitation iyswim.

I agree with above. Imitation is very important as you have to pay attention to imitate and ASD children tend not to learn because they don't pay attention to what NT children know is important. My DS could imitate in a haphazard way from an early age in that he would copy things I was doing in the garden but would not copy hand clapping or any of those games. Since starting ABA, he has learned a lot more words by being taught them in a structured way.

I understand your concerns about the costs and the worry about whether it will work. That is the great unknown unfortunately - but if you have had success with PECS why not work more with those with a view to promoting speech later on. Sorry if I have picked things up wrongly. I understand it's a sensitive time.

Strange thing is that my Ds was capable of imitating words. Those he learned he lost and any words he has learned since he has never retained. He is still capable of imitating some sounds- letter "B" "ooo" "eeee" and sounds he generally likes to say. He is actually coming on with imitation with objects, and copying lines and circles.

Ds1 used to speak as well staryeyed. He was very little though and I don't know if he could imitate at the time (I think early speech as in first words develops differently to later speech - remember a SALT telling me about it - if you think about a small child after about 18 months there's an explosion of words - those are apparently learned differently than early words- think early ones are associative- which kids with ASD can do quite well). As a 2 year old he could use actions in songs but they were taught them hand over hand moving his body through the actions (so using physical prompts).

Without an ability to imitate you cannot teach anything unless you do it hand over hand. If your child is in that category then ABA will be the best therapy because it pays such attention to prompts including physical prompts. Once your child gets imitation and does it away from the table - so does it naturally then I think other therapies can work well/offer something as well.

Son-rise focuses on imitation as well, but ds1 never really 'got' that other people were copying him (we used to something try it as a game).

My Ds also does action rhymes mostly from hand over hand learning.

I dont doubt the effectiveness of a good programme for one minute. I'm just not sure we have a good one.

When I sit in a session and think "why havent you done a pairing activity?" "Why arent you making this more fun for Ds" and start to think that I do a better job myself.

I do think that the lack of fun for your DS is a big factor. Steven Wertz, the therapist who supervises our ABA/VB programme, is very keen on something he calls 'wackadoodle' - ie. thinking of unusual ways to grab your child's attention (he always uses the example of putting glasses on the dog!). Unless it's fun for your child then it won't be motivating and if it's not motivating then he won't learn. Having said this, there are certainly times when DS2 doesn't seem to be enjoying his ABA - and at the beginning he was much more resistant to it than he is now. We started when DS2 was 4 and couldn't imitate (his language acquisition/loss pattern was exactly as you describe in your DS). Steven told us not to worry about expressive language at all at the start - we focused on imitation, matching and receptive language at the start. Then, because we were using PECS and DS2 started using verbal mands as a result, we focused on those (and still are). He has never lost any of these verbal mands.

Like Yurt, I've also dreamt of setting up some sort of ABA/VB service of my own - it's criminal that people should have to use their savings for something which, imo, should be available to all. What I'd really like to do is to set up a branch of Growing Minds in the UK ! Compared to some UK providers they're not that expensive.

Mind you, I'm having my own struggles with ABA atm, which is to do with managing a rather strong-minded tutor. After a particularly difficult conversation with her today I had exactly the same 'crawl under a blanket' response as you!

Right sphil- join Facebook and we will discuss how we can set up a social enterprise that will benefit parents (being a social enterprise will allow us to charge local authorities).

Do agree about the need for fun.

Oh will you stop blaahing on about Facebook woman . You know full well I'm a techn-numbskull with a deep suspicion of all things virtual. And there you go tantalising me with all sorts of interesting conversations that I can only have if i sign up to the blaardy thing. (scuttles off to do so...)

I've sent you an invitation....... you can be looking at photos of the boys within an hour

Ok so I went through my issues today. I said in a constructive way I hope that my Ds is not motivated if he isn't having fun. That they need to use tangible reinforcers and start with a pairing activity. I said some of the programmes need to change to concentrate on receptive language at least and imitation stuff. Everyone was in agreement but I still feel weird about having to say it as that is the principle that ABA is based on. Anyway I will be watching carefully and seeing if it improves.

Well done for being assertive. it's always difficult when you're talking to someone who is supposed to be more expert than you. I've had the same thing at school today - trying to get them to agree that DS2's 1:1 should come home to observe the home programme. They agreed in the end but it was a struggle!

You are absolutely right Staryeyed. Only praise as R+ at the beginning of a program is crap. Of course, praise should be paired with the tangible R+ which should be paired with tutor, with program blah blah blah. My DS has very good receptive language and I am sure he learnt that from constant exposure to language that was paired with corresponding actual/visual cues. So we didn't concentrate on "teaching" him to speak (which he never has) but on him being in a language-rich environment which included PECs and signing as much as verbal. In the long run he has been able to express himself best with PECs/Makaton, not verbally. So although it is right and proper to work on teaching language tangibly and specifically at some point, it is very very important to teach imitation and pair everything with pictures, signs etc. Otherwise, if your child does not develop language they have nowhere to go (something I asked Pat McGreevy about at the first UK VB conference in 2000, he gave a very woolly answer).

Ok Im still not happy. Things have improved slightly since I went through my issues. The problem is with the tutor. She is experienced (3 years)and I am paying an experienced tutor rate but she seems really inexperienced. She has worked with the Supervisor and Consultant for these 3 years and they recommended her. So that makes me wander what is going on with them. Im thinking of quitting the programme because I cant justify the cost for the quality of programme we are getting. Let me outline my issues:

1-not enough enthusiasm
2- making ds request for Reinforcers as a reward
3- not doing hand over hand to show him first-i.e. just expecting him to do it
4-not errorless learning- my DS gets very frustrated when he hears the word no and its hard to get him back on track.
5-My Ds isn't gelling with her at all he is only just tolerating her. He is very cooperative with everyone else he works with.
6- she keeps deciding what is reinforcing instead of asking- several tines I said "actually he doesn't like that"
7- I could be wrong on this but why would you do a maintenance programme on something my Ds has been able to do for well over a year?

I could change tutor but Im just doubting the providers for recommending her and not having trained her effectively enough. Maybe if we had a start up work shop this may not have been an issue.

Oh Staryeyed - I feel so frustrated on your behalf. Looking at your list, I would say that issues 1-6 are fundamental to a good programme. I could weep when I read point 6 - this is what happens at school with DS2. They get him to choose a toy (he doesn't really like toys) so he chooses any old thing because he's very compliant. Then they try to use it as a reinforcer!

Did you go through your issues with the tutor or the supervisor? I would have thought that any supervisor worth his/her salt would see immediately that there are problems.

Well despite my 1st opinions of Supervisor she did point a lot of these things out to the tutor. But the tutor has not amended. If the supervisor was the tutor I think I would be happy to continue. Just totally amazes me that 3 years of experience has not taught her some what I consider basic principles of ABA. Have completely lost my faith.

In my admittedly very limited experience of hiring tutors, it does take a certain type of person to do it well. We had one girl over the summer who was lovely, very bright, learned quickly, was very eager to please but just wasn't uninhibited enough to be able to summon up the necessary enthusiasm and intensity that's needed (with DS2 anyway). How easy would it be to get rid of her and recruit someone new? Can you insist that the new person starts with pairing and establishing reinforcers next time? I do feel for you - you shouldn't have to be doing this - it's what the supervisor is for, surely??

Don't lose faith - if done well it really is fantastic. And you sound like you have a really good grasp of what should happen in an effective programme.