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starting ABA next week!!!!!!!!!!

(17 Posts)
mum2fredandpudding Fri 17-Jul-09 15:42:42

hiya, just a quick update on how things are with me as there have been a lot of you who have been ENORMOUSLY helpful. In fact, my very sad post I made almost 2 months ago on the day of our dx was what put us on this path to --home invasion-- ABA.

Firstly - our wonderful government support:
Even though we have been on the waiting list for some SALT since mid-March, we have been told that due to staff shortages it is unlikely that we will meet with a therapist until September. angry

i have had the run around re: statement as they all seem a bit confused by the fact ds is not in nursery and I'm not planning on doing that for a while. it's like they have no idea what to offer unless ds is in nursery. However only just applied so this is all verbal, lets see what the next few weeks bring.

The BIG news is that next week we start ABA. We have a 2 day introduction course nad hope to ease ds into the swing of it from the following week. I am so excited about seeing if this can help ds get on, so scared that it might not help or that I might be unable to do it properly and so overwhelmed about hte prospect of trying to manage 4 people on top of my 3 2 boys and dh. THe hiring went really well (lots of suitable applicants), but it is apparent that things are going to be very, very tight for a while.

is there any advice anyone can give me to help be as organised nad prepared as possible. i feel like my head is swimming. im so nervous.

also - i have been told to buy a VB MAPP something something, but I dont really know what that is?

Im trying to film ds as much as possible {for future statementing processes) but he seems to insinctively KNOW when the camera is on nad become a charming little engaging fella and stop spinning hte wheels and nicely request popcorn. Argh!

smallwhitecat Fri 17-Jul-09 16:22:17

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mum2fredandpudding Fri 17-Jul-09 16:56:02

hi smaillwhitecat - thats great news. i look forward to comparing notes. DS1 is 2 weeks off being 2yrs 8months also, so it will be very interesting!

we are going with DUncan fennemore of CEIEC as we got feedback that a VB style of ABA was the best (from mumsnet as well as a few mums i have contacted who have used Lovaas and VB). We have 2 days training next week and will kick off following week (we think, provided I can schedule things well). We Are going to start at around 20hrs to begin with (so as to not freak DS1 out) then all going well work up to a more intensive course. We are London based and managed to get abuot 15 applicants witch were viable through gumtree and the ABA YahooUK group- but mostly through emailing them direct from ABC Therapists.

hopefully in a month or so when it is running well i will have the time to focus on statementing and getting that all in order.

mum2fredandpudding Fri 17-Jul-09 16:58:48

tbh im wondering about SALTS effectiveness. I spoke with the borough co-ordinator and she recommended i get More Than Words in the meantime (which i already have), which when comparing it with the ABA manual, i cant help but feel the SALT stuff will be well integrated in ABA. BUt willing to see what they can offer.

smallwhitecat Fri 17-Jul-09 17:38:19

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mrsbean78 Fri 17-Jul-09 18:42:56

Hey, don't throw the baby out with the bathwater!

I'm an NHS SALT and services in the public sector are minimal, it's true.. I work with kids with autism and most of the resources are ploughed into the diagnostic end, with limited/non-existent therapeutic input. That's unfortunately the case for most communication disorders. Even with our limited service, we are seen by the NHS as an 'expensive' service as typically our appointment times are long (an hour) and a full, proper assessment and therapy just takes hours and hours and hours, and we don't have the capacity. I work in a busy city and there isn't ONE full-time post to cover a city sized populatin (currently .9) I wish it weren't so, but it is.. My work is mainly in diagnosis of over-5's and while I can do a thorough job BEFORE/DURING the diagnostic bit (3-4 sessions, more if needed, plus multidisciplinary sessions and discussions) I am allowed to provide minimal follow-up. We fight.. but we get nowhere. Don't think we're not frustrated too!

HOWEVER..

I was also an ABA therapist, in my former life. I worked for a major consultancy carrying out home programmes. I miss it, but as I got to the age of needing kids of my own, I needed more security in my life than an hourly wage with no benefits could offer.

I think if you can get a good SALT who has a bit of knowledge of behaviour and isn't suspicious of ABA, we are a valuable profession who can assess and benchmark language and communication skills and add value to your team. The ABA team can 'operationalise' targets that an SLT gives a different perspective on.. I don't think I would use an SLT in the early stages of an ABA programme or that I would use one to offer therapy.. but someone who tweaks programmes to address more advanced language skills is good. I find that more advanced ABA programmes struggle with more advanced language and a good, experienced SLT (not just someone in community clinic, but someone who has given regular input to kids) can be very helpful.

We're clearly no substitute, but then it's a given that something that has pennies thrown at it (only 45 minutes allowed per child per half-term) is not going to be comparable to a grade-A ABA programme. Kids with ASD need that intensity and the public service doesn't provide it. Our services are continually cut, even though by international standards they are absolutely paltry. I'm lucky - I can stand my job because I work in a language unit and get to offer regular ongoing input but SALT isn't a rubbish profession, it's just the provision offered publicly is not often up to standard (through no fault, really, of the professionals themselves)

smallwhitecat Fri 17-Jul-09 19:28:59

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juliaw Fri 17-Jul-09 21:02:36

Hi, our DS (2 years 8 months tomorrow) got his diagnosis last week. We got our refusal to our request to assess for SEN today (on the day everyone in education goes on holiday for 7 weeks). We had hoped to get DS into a fab local special nursery which use a range of approaches and which I know from other parents has a great reputation, but the refusal to assess puts paid to that. Our back up plan is to start ABA and we are now trying to get a 20 hour programme up and running. We were hoping this was just a short term measure until we got into nursery (because that makes the rest of life - work - other kids etc a lot easier than ABA) but now it might be for the long term. Currently we get very occasional speech therapy and nothing else and LEA won't do anything until he is 3, so we reckon ABA has to be better than nothing. My son regressed at 2 so has lots of words he learnt before age 2 but no longer uses them much. However he is slowly becoming more verbal again. We live in the North so VB is not an option - we are years behind the times apparently; but we feel we have to give it a go. We're going to do it mostly ourselves with some hours through the agency + their supervisor. Be interested to hear how you get on. One issue we have is SALT is pushing PECS but ABA supervisor says as DS is trying to be verbal and has the words, that we should hold off PECS for a while as using PECS might remove the motivation to use the words - we have been having quite a lot of success with signing - ie he does the sign but says the word at the same time - the sign seems to help emphasise the word and help him "find" the right word. Am worried that ABA is going to mean we fall out with the SALT who I really like and mean the LEA do even less for us - we are due to get outreach / Portage services now DS has his diagnosis - but not until September as children don't have autism in the holiday apparently!

moondog Fri 17-Jul-09 21:42:48

MrsBean, that is a terific post nad exactly what I was about to write, only yours does it so much better.

I'm an NHS salt currently completing my MSc in ABA and working towards BCBA accreditation.I agree with everything you say. In fact,I think I will keep your post for future reference.

smile

PipinJo Fri 17-Jul-09 23:04:32

Message withdrawn at poster's request.

moondog Fri 17-Jul-09 23:07:04

That's a nice and wise post Pipin.
smile

smallwhitecat Sat 18-Jul-09 08:32:46

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mrsbean78 Sat 18-Jul-09 10:59:26

Hi Juliaw,

RE: PECS and speaking
Shouldn't really stop speech at all - and from a behavioural point of view, you can add in contingencies (ie. rewards/consequences) that make it necessary that he will speak while using the symbols e.g. for words that he has, he has to attempt to say the word at exchange before he gets the item. As a home tutor (also up North!) I did PECS very successfully on home ABA programmes because PECS is actually a behavioural approach..

I'd guess that your supervisor wants Communication Temptations to be a key focus if s/he wants verbal only (e.g. using the same idea to get him to use his words for requests rather than a picture). I can't see any reason though why you can't do this with items that are very highly reinforcing and see how it goes.. you'll either get a very rapid turnaround with ABA (he starts using the words straight away when it becomes something he has to do when he 'gets' that if he doesn't, he won't get what he wants) or it will be slower. If it's very slow and he's still quite frustrated, I'd definitely consider either PECS or sign to support him at this early stage.

Sign is a more 'natural' system than PECS and if he's watching/willing, it's a really positive thing. In some ways, The only benefit of PECS over sign, really, is that PECS symbols are more clearly understood by the receiver than signs that are not very clearly shaped.. (e.g. people who don't know him well enough to know all signs). Words are obviously easier still..

I guess (not knowing your son, and working only on a theoretical basis here) I would go with Comm tempts (verbal) but maybe incorporate some sign with it - but a true combination, so that you expected sign and a vocalisation/word before exchange.

RE: falling out with the SALT.. Most SALTs have never even heard of ABA and if they have there's some VERY negative misinformation out there about it. So she may be a bit bewildered to hear that there are people out there offering you advice on these things who are not SALTs themselves. We have to pay £151 a year to our registration council to grant us the right to call ourselves speech and language therapists so you can see why if people you've never even heard of seem to be advising on things you think are 'your job' you would be worried and sceptical for the family at the centre of it. Think of how an electrician feels if they hear that people are doing rewiring themselves..

The best thing is for her to see it in action if this is possible - my Senior Specialist was very dubious about ABA before she first saw it because what she'd found out about it was very 'old school', but when she watched a programme in action she thought it was really lovely and she could see that she didn't need to add any recommendations to it. Seeing is believing!!

moondog Sat 18-Jul-09 15:54:02

Further ot another excellent post from Mrs Bean, would add that I like PECS because it allows a person to form long fairly complex sentences in a way i have never seen even quite proficient signers do.

(eg 'I want three small red cars')

As pictures are physical entities, the person building the sentence has a physical reminder of where s/he going with it whilst working on the latter part of it.

Signs, like speech, disappear once made, so harder to do this.

mum2fredandpudding Sat 18-Jul-09 19:51:35

hiya - thanks for the posts everyone. i. cant. wait. to. sleep. Most nights I am miserable as I try to go to bed, lamenting how little I have done to help DS1 that day. It is just so hard to find the time and energy in between running a household, ds2, organising aba, reading the books/manuals etc. Plus I am all over the shop with how i approach things... i just want direction, i just want to sleep knowing that some solid time has been devoted to him.

re\; salt stuff. that is all really interesting. i spoke with my SALT on the phone and she sounds knowledgeable and relatively pro ABA, but as im not even going to be meeting her until late september, I suspect she is going to have no say in the matter of which therapy i choose!. It is interesting what you say mrsbean about perhaps leaving SALT input until we are a bit down the track with ABA. Im actually not too sure what I am entitled to yet through SALT so will discuss these options with her. Im all for as much qualified help as i can get, but at this early stage want to make sure it all fits with my program,.

mum2fredandpudding Sat 18-Jul-09 19:57:17

juliaw - hiya - congrats (??) on the dx. ABA is an excellent back-up plan to have i think and will no doubt help ds enormously when you finally do get him into some sort of sn nursery. PECS and signing are used in ABA, but I would perhaps trust the ABA advisor if they have lots of experience w. HE is the one familiar with ABA and kids at all various areas of language development using ABA so he should know what to expect of your child using ABA. whereas your SALT may not be that familiar with ABA and what hte alternative to PECS using aba can offer. If you feel that the non-PECS route is not working (and you should know within 6 weeks) programs can be revised to include that.

sorry ive got to dash to do food stuff and no time to check what i wrote nad KNOW it is a mess! will revise later

juliaw Sat 18-Jul-09 20:18:21

thanks mrsbean thats interesting I do feel nervous about which advice to follow and going against advice of those who have been helpful but i am hopeful once we get going it will be obvious fairly quickly which way to go. We have got the PECS ready so we can go with either. Good idea to video the workshop Moondog will definitely do that. MYS - agree about the solid time - we feel we waste so much time each day not knowing what to do for DS and that what we are doing is so inadequate.

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