ABA discussion - anyone been running a programme for a while?

[sadminster]

can I have the benefit of your experience?

DH & I have loads of questions

• what method/provider did you use, how did you decide what would suit you/your child?
• how did you organise it - how much did it cost
• would you do anything differently with hindsight?
• how did your child respond? What kind of progress did they may? Do they enjoy it?
• how many hours do you devote to it a day/week?

Any advice for someone new to it all?

I really appreciate all the help you're giving me.

hi sadminster, i was just about to reply on the other ABA thread to ask if you had any questions you wanted to ask. we have run a programme for a while, and are about to re-start it (had a break due to house move)

We use Sean Rhodes. We think he is great, and he has really got the measure of dd1 (who can be a tricky little madam). We approached PEACH, BIG, Duncan F, and someone else who I can't trmemebr now. I did a LOT of reading on here - searched old threads etc - before approaching any of them. Then I talked to them. BIG came to our house for initial meeting, others I talked to on the phone. We didn't like BIG (personality clash), and PEACH were a bit disorganised (which crossed them off the list - I am disorganised enough, didn't need extra chasing issues etc).

When I talked to Sean, it all seemed to click. He seemed to be saying what I wanted to hear - lots of emphasis on doing ABA within a family setup (not necessarily meaning me as tutor, but had just recently had dd2, and weren't ready to run full on programme - we needed to feel like a family iyswim). He asked a few questions about dd1, and they were good questions - not just the usual "is she verbal?" type, but quite insightful ones about behaviours etc. He was (and is) very nice to talk to, and made me feel positive about running a programme, which others hadn't.

We booked him in from there. We had been looking for someone to help us out as a tutor/nanny. we found someone using ananny agency, but that was due to our extrememly rural location at the time (no handy universities or even sixth formers!). she was pricey but very good (£12/hour). we had her for 20 hours a week.

Doing things differently? yes. we are now going to have a tutor, not a tutor/nanny. dd1 (and the nanny) found it hard to switch between tutor and nanny modes, and this got in the way of the programme a bit.

dd1 responded brilliantly. she had a tough time initially as she resisted it,, but once she saw we meant business (in the nicest possible way) she really thrived. dd1 thrives on any 1-2-1 though - she lives for attention, so the programme was to get her using more langugae, and learning things in a way she could not do at pre-school. within a week dd1 had goen from "raisins!" type demands to "mummy, I'd like some raisins". dd1 is extrememly verbal though, and an excellent verbal imitator. so she already had all the words, and the programme was just showing her how to use them. she did learn an awful lot more as well, through playing posting games etc. and she learnt motor imitation which was a big breakthrough. she loved the rpogramme because it meant full on 1-2-1, which she loves. that's not to say she didn't find it hard, or have moments of non-compliance. dd1 has huge control issues, and if she felt that she were not running the show, she became non-responsive. this is an area we are looking to work on when we set up again.

as I said above, we has 20 hours a week, so 4 hours a day Mon-Fri.

when we start up again, we will be doing about 16 hours a week, varying between 2-4 hours a day depending on dd1's school hours (she is 5 in August).

I hope this has helped a little bit, please do ask anything else you want to know - i will happily answer most things!

watching this thread with real interest. Starting ABA training TOMORROW!!! eeek!

(ps im sure im with others interested in ABA saying how amazingly forthcoming all those experienced ABAers are. So generous and helpful. Thank you)

(pps I will absolutely keep y'all updated on how i think things go over hte coming months. it is a BIG decision)

swc - that's incredibly helpful

How old was your dd when you started? I also have a very small baby & managing it all worries me.

Did you meet Sean before he set the program up? If you had wanted to do any of the sessions would he have trained you? How often did you see him once it was running? My mum has said she would like to do a couple of sessions with ds. What is the training like?

I'm really worried about how ds will react in the beginning ... I'd like support from someone experienced at least in the early days.

ds isn't really verbal. He has about 10 words he uses regularly (some words have been lost) & about 5-6 sounds for words (meow = cat, moo = cow etc). He uses his words to label but never request e.g. he will say apple if he sees one but not if he wants one. I honestly have no idea how much receptive language he has, he'll just ignore us if we suggest something he doesn't want to do.

I'd love to get him to the stage where he will respond more regularly to his name & give me/show me type requests & be able to indicate what he wants (food/drink etc).

m2fred - I'll be really interested to hear how the training goes!

doh sorry silverfrog - I got my threads muddled up (been up all night pretty much). Thank you!!!

No problem sadminster. Am typing from my phone so sorry for typos.

Dd1 was 3.9 ish when we started, dd2 was just over A year. That was why I had someone else to do all the sessions as dd2 wanted to ne far too involved. Luckily this was an oprion for me.

We didn't meet sean before we started, just spoke on the phone (and dh rang him too). It was gut instinct from talking to him, and I think hVing seen some people who we knew wereNOT right helped a bit too.

To start up, sean did a 2 day workshop. So he came down for 1 day, spent the day doing a bit of intro stuff and outlining broad strokes of what we would be doing. We had our tutor there for the full day, and sean went through how to talk to/play with/react or not react to dd1. The training is very hands on, so for eg he would talk through getti g dd1 to participate in Reading a book together (Reading in the loosest sense, she enjoys labelling picture dictionaries for eg) and thenhe would show us himself doing it with dd. He is brilliant at getting on with dd, which was something we worried about as dd1 can be really funny with strangers a d men in particular. Then he would get either us or the tutor to do the same, observing and making comments as necessary.

So it doesn't matter so
much who you have doing the tutoring IMO, but if possible I would have someone there to
look
after your baby as much as possible so that you can pay attention. I used to send dd2 to a child minder for the day to get her out of the way as she just wanted to get involved, and as the whole thing revolves around playing we couldn't keep her separate iyswim. We sW sean about every 6 weeks or so. Between his 1st and 2nd visit (only 2 weeks as was start up) he told us which bits of the ABLLS he wanted us to concentrate on assessing dd1 with, so that he had more of an idea where to go with the programme. I suspect we will be using VB MAPP when we start up again.

Dd1 reacted quite shockingly to begin with. Initially she was all sweetness and light as she thoguht she was I control bit as soon as she was pushed a little she clammed up. The fuse point for her at that time was being appropriately verbal so she had to say "turn page please" for eg to progress with the story (this is dd1 specific, please don't think sean would jump in here for your ds if not appropriate). Dd1 went very quiet, walked away for a little bit, came back and thoguht she could move on. Was shocked when she couldn't and got tearful. Then angry. Then frustrated. Then back to sad/pitiful and pleading. Basically she tried every way possible to get out of doing what was for hera simple (but previously unasked for) task. It was a battle we had to get through, and we had to do it quite a few times. We also had to do it with each person, eg once dd1 had got through it all with sean, it didn't mean she would so it for me. Calm, consistency and patience much needed at this point.

Sean has been rely good at phone/email support for us, especially recently and we haven't been seeing him regularly this year even. He can be hard to get hold of as he is very busy, but when you
do get hold of him he is vert helpful. Our tutor was completely inexperienced in ABA when she started wit us. For us the important bit was getti g somone that dd1 liked and related to as that is most of the battle won with dd1.

sadminster - DAY 1 - and it feels great. Im feeling so positive about my choice and where things are going.

Make sureyou do research not only into the various groups that offer ABA (find hte consultant you click with) but become clear on how nad in what order they are proposing to go about implementing ABA. Becasue my DS is so young (2.8) we will not be working at a tabletop, but instead following his lead where and how we implement it. We are also goign to be focussing on 'Manding' (requesting/commanding) first (this is typical of VB) as many of DS's poor behaviours are a result of his frustration of being unable to control his environment and feeling powerless. It is going to be a very dynamic approach that constantly re-analyses itself and adapts itself to suit my changing child.

but feel good from day 1 (scared about being able to do it myself, but im sure that in time i will learn)

cant write more as used up my computer time!

This is all so useful!

m2fred, I think our sons are pretty similar in age (October 06?) how verbal is your ds? Mine has about 10-15 words (& sounds) that he uses semi regularly but they tend to come and go. I'm interested in VB - ds only labels, even if he has the word he won't use it to request.

I got the PEACH pack yesterday - knocked me for six slightly ... you have to do 40 hrs, you have to employ 3 tutors ... that and littered with scary statistics about outcomes Sean was much more flexible when we spoke to him. Training at £87.50/hr and initially it is 2-3 days.

I'm going to keep on reading & researching - and trying to find ways to raise a couple of thousand pounds but wait until after BIBIC to contact anyone specifically about ds - just so we have a better idea about what he needs. I'm feeling so lost at the moment, I would love someone to come and tell me what to do.

I have a meeting with the NHS SALT & a manager tomorrow (my HV is coming to be on my side) - I'm going to ask them for PECS & makaton training (don't think I'll get it in a million yrs - they don't even do Hanen here) but I'm so angry that they were prepared to leave an almost completely non verbal child with no provision at all

Hope your program goes well - Please keep us posted - assuming you have any time !

Manding and Tacting ! It's nice to see someone using their Latin - Mandare/To ask. Tactare/To touch (upon a subject meaning to comment)

What is commanding though ? DS1 shouted out 'Faster' when the car slowed down for roadworks yesterday.

sadmister

they provide nothing here in Noth east Essex for a nonverbal child ,I had to self fund Makton and pecs course

Yeah Phoenix, I'm expecting the same here We're realising that we're going to get no help at all. Yesterday I was on the edge of complete despair, I just sat and sobbed - I've admitted that I need to get some kind of pharmacological support because I am not coping at all. DS's behaviour/whinging is getting worse & I'm sure it is as a result of the frustration of not being able to communicate.

m2fred - how is it going? Pretty intense I imagine!

Got onto the ABA-UK group yesterday with triggered another panic attack. I really don't know how we are going to manage to do anything it all seems so bloody difficult [self pity]. DS is so lovely, I want this all to go away & at the same time I want someone to tell me exactly what is wrong & what to do about it.

Sadminster - don't feel daunted: IMHO there is a lot of bunk talked about how hard/intensive it is to do and set up an ABA program. I've been doing it for 3-4 years and the truth is that the first decent break I got from my, at the time, unmanageable DS was when ABA tutors started turning up and I got a blissful 3 hours off to go and have a coffee, or mooch round the shops or go for a swim or read Heat mag. It saved my sanity in this way, as well as in so many others. Make sure you do take a break - at first your child may need you to stay nearby, but try and crack that early on and go out. You are paying the tutors to teach your child, and you need a break! If you would like a chat about how it all works I'd be very happy to have that chat. It is WITHOUT A DOUBT the best decision I ever took for my DS. He is now reading, writing, talking a little and has hardly any bad behaviours - it's my firm belief that , without ABA and with the state autism education system, he would have progressed little or not at all. You are doing the right thing - if you need an AD to take the edge off, there is no problem, but don't let all these people who say "it's got to be 40 hours (it never was for me)" or "it's very disruptive on family life" (bollocks, not for us, it actually improved it as I ceased going insane) or "parents must be at it 28 hours a day for it to work" (also bollocks, though you do have to be consistent and not let the kid get away with naughty behaviour). But I have managed to read a lot of Heat/OK/Hello mags over the last 3 years so it really isn't as intense as all these chat rooms suggest. Your first duty as a mum, I believe, is to stay sane - so do ABA in the way that honours that first duty. Let me know if you want to chat on phone, I could CAT you my number. X

thankyouthankyouthankyou both!

We're off camping for the weekend (monsoon weather of course) with the children in about an hour. I intend to drink lots of wine. I will email as soon as I'm back - I think only people who have been/are going through it can understand how terrifying this all is.

I've just had the local SALTs here for 2 hours doing an assessment of J & giving me some PECS training. They are going to come weekly through August to help us get the hang of it. I'm quite surprised at how helpful they were. PECS is ABA isn't it? She talked a lot about fading prompts as quickly as possible which sounded familiar.

sosce - it is so good to hear from someone a bit down the line that it hasn't completely destroyed them [reading doom & gloom about divorce, bankruptcy, poor mental health etc]

sadminster - DS1 is 2.9 i think (argh. i get so lost with the months!) He was born hte very beginning of Dec 06. It's hard to describe if he is verbal, but I would lean towards yes. He has about 200 'words' in that he has specific sounds for specific items but none of which sound exactly as tehy should (panda=dada, bird=ber, circle=ca-ca etc) Almost all of these are nouns.

In setting up his training we have talked about perhaps using signing (makaton), but have decided to see if we can move forward on the verbal if pushed in the next month and then may ot may not start signing. (They stress that this is NOT a backwards step, for many non-verbal kiddies this absolutely enhances the verbal)

Look - choosing whether you go VB or a more traditional based method is one of those decisions which i think people feel quite passionately about so Im loathe to say one is better than the other without any experience. The reason I chose VB is that I felt it was a few steps ahead of the traditional approach and catered better for my son. A key area that made me feel this is that it was all done in his natural environment. Instead of trying to get DS to sit at a table and rote teach him labels (tacting) the tutors follow him around wherever he wants to go, engaging him in his interests and growing them out from there. In our first session yesterday a wonderful wonderful girl sat with him in hte sandpit and went from there. Down the track as things progress some table-top exercises will be introduced, but not until a time which it is an appropriate expectation for DS. THe second reason is the fact they teach requesting first which for my DS i think is paramount in importance. THe third is that they only teach words functionally - ie. THey dont teach him cookie for the sake of having him point at a picture and labelling something. They teach him 'cookie' as a way of requesting it as something to eat (and thereby teaching him to label it by default). ANother is that they engage in errorless learning - they never say no. THis begins by prompting and then fading hte prompt out as soon as possible - to my mind this went hand in hand with the idea that DS never gets reinforcement (good or bad) for anything other the right behaviour/word and makes it less confusing and more 'positive'. Another is the dynamic nature of the program - if something is not working it will be addressed immediately nad dynamically - there is not a set response to a failure, but rather a re-assessment. Finally the program itself is not from a pack. I dont know if this is VB or my consultant in particular, but the program is devised by me with their help. Whilst it is created with the insight of the hundreded of other programs they have run, it is still very tailored to DS and where we go and what we decided to tackle next is always relevant to DS.

However, as I have said, this is just the way I read things and what i interpreted. And the bottom line is that ABA in whatever form is meant to be incredible.

Echoing the above ABA is the only therapy with years and years and years of irrefutable data behind it. And do not listen to having to do 40 hours a week. Any ABA is better than no ABA and 10 hours a week is absolutely going to make a difference. It is about what you are able to do.

As I said above we had our two training days nad have so far had 2 3-hour sessions. Day 1 was theory and On the second day the tutors nad ourselves spent the whole day with DS putting ABA into action, learing about DS and how to reinforce him. To say I was nervous about his response to these strangers is putting it mildly. But I could not be happier - we laughingly concluded that it was his 'Best Day Ever'. SO many people paying attention to him and praising him and letting him play with alll his favourite things! He did things I have never seen him do. He took to these new people on a level I hadn't dreamt possible. THen on the first tutor session I had yesterday, one tutor blew. me. away. I watched her from afar (gave her and DS space) and I can not tell you how amazing his response to her was, how excited it made me feel. I have no questions about this therapy anymore. And whilst i might be whistfully projecting, I believe I already see a few really positive changes in his engaging with me. I will keep you updated with how things go (an feel free to email me if you have any specific questions also. i think you cna do it through mumsnet? dont know. tell me if not as i can send an email).

and i also want to second sickof by saying that setting up ABA was actually significantly easier than i thought it was going to be. Finding tutors took a bit of time and trying to organise a schedule did my head in a little bi - but everything else (besides the decision to DO it!) was almost too easy. Plus I cna tell you that those 3 hours the tutor was here, it was like I had hired hte most amazing babysitter in the world and I could go and read my book, poke around mumsnet - blissful me time!

I'm at the 'lite' or decaffeinated end with around 3-4 hours VB a week but finding it very useful as part of a wider strategy. Is anyone else using VB-MAPP ?

the thing about ABA is that even if you are only doing a 'lite' load, the techniques you use become a part of every day life. they significantly affect how you engage with your child (and in a really good way). now when DS1 tantrums, i have a plan. Now when im trying to get DS to do something, I have structure. It feels good becuase I felt so lost for the longest time on what the best method might be.

cyber - we will be using VB-MAPP (mine is on order) specifically as a tool to analyse where he is and how he progresses etc. Can't share much on that as my copy is on order and not really too sure what the ins and outs of it is yet. (perhaps you cna enlighten me....)

smallwhitecat - i absolutely agree with what you said. just trying to explain a few of hte differences, but it absolutely does come down to a personal preference, i know that many are VERY happy with Lovaas style. I get the impression that my consultants def feel that VB is the be all and end all but that didnt really bother me Oh - and I also had a person suggest that i didnt want to let autism take over my life and i thought hte exact same thing - like i have a choice! You must let me know how you get on. Its really exciting. Im so excited for you. I cant wait to see my DS in 6 weeks, let alone 3 months! Tonight he picked up a helicopter nad tride to 'brrrrmmmm' it along like a car. When I shoped him the correct way ONCE he copied me straight away. I dont know if it is a bit of a natural spurt or off hte back of such an intensive few days of attention, but that sort of thing would normally take me showing him 50 times over a period of weeks!

The VB -MAPP is a useful tool to assess where your child is in terms of language development and to help you set goals. Your child might score differently for tacting compared to manding or to 'intra verbals' so you can see where more work is needed. DS1 started out with a lot of labelling words (receptive) then started requesting and commenting so i don't think labelling words is wrong as such just that it becomes a problem if the child does not move on - but it's the not moving on that is the problem/. If someone does not value your child's language they will always find something negative to say about it. We now get told that DS1 only asks for thing he wants or only comments on things that interest him. I wonder how often these people go into bars/restaurants to ask for things they don't want. Anyway good luck to all programs - virtual bottle of champagne crashed against the side...

Back and reading with great interest!

At the moment ds' major problem is language which is steering me more to VB - he has got a number of ASD traits but I don't think we're going to get a diagnosis any time soon (long wait for paed). We're of to BIBIC in a few weeks & I'm hoping that they will indicate particular areas of concern. He did pretty well while we were away - no tantrums, responded to his name (a couple of times - didn't come but stopped & looked), initiated games a couple of times (chucked a ball at us, giggled & ran off looking over his shoulder?), responded to us initiating & changing games, followed a point & even pointed at some sheep (with lots of prompting); he heard & looked for aeroplanes flying over which he hasn't done for months (no pointing though) & waved spontaneously (not at all consistently though). He doesn't point/comment anywhere near as much as other children his age & apart from the lack of language he seems extremely immature (despite being big for his age) - as usual watching other children really made the differences stand out.

The SALT on Friday thought that there was a definite improvement in his attention, response to sound & vocalisation (he has been babbling). She wants to concentrate on manding - using PECS to motivate him. He has words (about 20-30) that he uses to label but will not use to request, she hopes the PECS will put the two together (so far he is grudgingly going along with 'biscuit', but not saying anything). I'm not entirely sure what I'm doing. We're going to talk to a couple of consultants this week - we have more of an idea of what we need to ask & we have to get a realistic idea of the £££ before we go any further.

Electra 'After 2 hours of ABA, the tutors had her coming when called and within 6 weeks she was verbally requesting items' ... you can't imagine (actually you probably can) how good that sounds to me.

"you can't let autism take over your life" What a joke!

Smallwhitecat, right you are with this one

'A recent study was done on ABA by the University of Southampton (google SCAMP study and you'll find it) which showed (a) there was no adverse effect on parents undertaking intesive ABA programmes (indeed, parents said they felt better for doing something)and (b) clear gains for children doing an average of 25 hours per week. '

Iamprofessionally involved with one of the authors. Indeed, other research shows that levels of depression and stress are no different in parents who undertake ABA.They are generally mentally more stable-no doubt because thay are doing something and not at the mercy of the creaky largely ineffectual LEA/NHS 'treatment' hybrid.

Thus,dismiss any professinals who try andfob yuo off. Not saying it isn't hard and intrusive and draining [it is] but that's something most people can dealwith when they see their child make realprogress.

In addition, they have no right to say such thingsabout something that 99% of them know precisely fuck all about.

That is also unethical.