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.

Plus ignoring fact that default option generally useless anyway, but strangely noone considers this.

Yes.With kids like this, we need a radically different approach.What is typically on offer from SALTs, SEN teachers, HVs and nurses just won't do the trick.

Lots of reasons

Lack of training {budgets for this kind of stuff are tiny}

Huge lag between research andpractice {my research supervisor reckons there's a 20year lag}

Inability to keep abreast of new developments in specific field due to incredibly wide range of disorders anddealys that average HCP has to deal with- ASD just one of many.

An arrogance that assumes that the HCP in question knows more than anyone else

A refusal to accept that there are alternatives

A dislike of being found wanting

Irritation at parents who don't lie down and accept what is told to them

A vast workload which means the HCP in question can only give a pretty average service

An unwillingness to stick their necks out which may rock the boat for other colleagues

I never get why people think GPs should know about this stuff. I'm amazed at how many cvome out with absolute crap about communication disorders which parents take as gospel.

sadminster

quick post if there saying theres no makton courses , try phoning the adult salt team they often run them and the teams dont seem to talk to each other so your salt might not know, and you can get it for 40 for a 2 day course

Phoenix thanks, I'll follow that up with the SALTs.

The PECS isn't working brilliantly - for a start it needs two adults around which doesn't happen here very often. We're doing what the SALT told us to but ds isn't getting it at all (perhaps we're just not doing it often enough).

He's picking up a couple of makaton signs a day which sounds good but they are yet more animal nouns - so now he can sign & say duck, fish, dog, crocodile etc which is not really helping his communication.

Having a really bad day - I don't know how to help him. Have portage coming tomorrow.

Have spoken to another consultant & we're arranging for a assessment visit in the next couple of weeks.

swc - he's completely doing my head in (lovely expression) - he's tiptoeing which he never does (both dh & dd1 tiptoe), constantly croaking like a demented pig & demanding Mr Tumble.

(I have an email for you but I can't send it from this computer & can't get to the other one because dd2 is constantly feeding going insane emoticon)

we're seeing a consultant next week - I'm completely terrified/

m2fred - how are you getting on?

hi sadminster.

unfortunately not having a great week, though nothing to actually do with the ABA. DS1 took a tumble of Friday night and really cracked his head. To the point where I took him to emergency. GOt sent home 6 hours later as he seemed to be fine but a few days later he has started randomly vomiting nad holding his head and crying. DS1 is a real tough nut and hte easiest kid to placate when hurt, so this unstoppable crying is new to us nad concerning. DH took him to hospital last night after the vomiting kicked up again and htey are still there. THankfully (??) they are now 99.9% certain it is a virus and unrelated to his head.

On top of this (!!) we were told on Saturday that we had to move out of our house by tuesday (long story, but that is the upshot). Cue furious packing, cleaning ... and finding a place to stay. THe place we plan to move into will not be available to us for another week so in hte midst of summer holidays and seemingly zero availability of places around where we live, we have had some kind, kind friends in the country take pity on us nad take us in. Phew!

So we have not had the best start to ABA. At the moment we are trialling a few of hte tutors as they all seemed really good. It is apparent to me that the ones we will hire are those with core children skills - people who are kind, patient and attentive with DS. ONe tutor who is a psychology student, whilst lovely, really has no idea how to interact with a yound kid and DS picks up on that and blanks her even though she tries really hard. But we have had a couple of them who are fabulous and he is already thrilled to see them when they walk in. He already understands that these people are here to play with him and he loves it. He actively seeks them out and makes sure they follow him from activity to activity... to the point where he blanked his dad (number1 fave) in favour of this tutor!

But have had a difficult few days with DS being under hte weather and have had to cancel sessions for hte rest of the week until we are in new place next week. On top of hte intensive day where all the tutors worked with him, we have already done aobut 5 3-hour sessions (we are starting on a 40hour program because we hope that if we do it intensively for hte intial period we can make huge improvements quickly and lessen the sessions in the future) and mostly they have gone really well (even with DS being a bit grumpy as he was starting to get sick).

Since dx and reading a number of books and putting some things in place (eg how we try to engage with him) we have seen DS1 really come along. I do however feel that these few sessions have already had an impact (rose coloured glasses ? - time will tell)on things such as him initiating communication, his imitation skills, his referncing us and hisplay with us. I could count on one hand how many times in the past few days he has gone off to play by himself (a week ago it was an exception rather than a rule), he seems to have really come on well with his desire to interact. He is making some new babbling noises but I think speech will be hte biggest challenge for us in the long term

At hte moment I feel elated with the choice we have made. I really see DS1 doing well with it, it really seems to suit his personality. That being said it is early days and he may be a bit more resistant when things get a bit more demanding of him.

'cracked' is the wrong word! eek! 'HIT' or 'BANGED' much better

also - dont be terrified of consultant! its going to be great! no need to be terrfied, you'll be patting yourself on hte back later...

m2fred - it's great to hear from you! Poor ds sound like you've had a really torrid time.

I'm so happy that the ABA is going well though! We're looking at doing 20 hours to start with & seeing how it goes from there. I'm just desperate to start - really despairing at the moment. I guess I'm just scared that it won't help ds & we'll have put all our eggs (£££) in one basket.

Our major challenge is language too - I'll be really interested to hear how you get on. I wonder how we'll deal with ds' blanking (more than tantrums he just refuses to engage with us at all should we be suggesting something he doesn't want to do).

I have portage coming in 45 minutes - house is a mess & ds is refusing to eat (just chucked his pasta on the floor) ... deep breath!

thanks guys. he is fine. i have kiseed him a million times. hes home nad a bit cranky but seems to have turned a corner. We have never really had a sick baby (beyond the random cold/flu) so count our blessings there.

Finding hte right tutors is absolutely key. Not sure what it is like elsewhere but have had a REALLY good response for London and am happy with the pool we have to pick from.

sadminster - from what I understand of ABA is that within 3 - 6 months they will have a really clear picture of if your kid is responsive to ABA. My consultant (duncan f) basically says that at least 8 in 10 of their kids are responsive to ABA and the 2 that are not would most likely be in the more severe definition of ASD. He is very hopeful for DS1 and virtually said that in a year from now he believe we could very much not be needing his help anymore. But whether this is the case is something we will be able to gage pretty damn quickly and I reckon that at 3 months we will have a pretty clear indicator as to whether we are spending our money wisely. It IS a big basket to be putting your eggs in but from the feedback from other mums and the sheer statistics of it all - it is a basket that simply can not be ignored. If you can financially, and if you are able to marry your mind nad child with it, it is THE therapy to do. It will not be in vain, it will not be money wasted.

re: blanking tutors.... well the kids are ASD, it is to be expected!! the main thing is is that the tutors are able to take it on hte chin nad persevere and find ways to crack their attention. My DS gets a bit lost in his sand play but hte way the tutor was able to engage in that and get him WANTING her to be involved was beautiful to watch.

re: language - DS1 is borderline needing to learn makaton signing. We are trying to persevere without it at this point but may have to introduce it down the track. He has excellent receptive cognition and 200+ words that he 'says' (none sound as they should) and tbh I would be suprised if down the path he is diagnosed as dyspraxic. BUt hte point is is that at this point he is very vocal nad trying his hardest to put sounds out there to communicate his desires. I am really hopeful that we can move him forward without signing. I think this sort of descision will ultimately lie with the consultant and their experience.

anyway - must go as dishes to so and beds to be slept in!

DS has about 30-40 words now but they tend to come & go from his vocabulary (yesterday he said star & splash which he hasn't used for months but he's given up saying apple & dog, he's just learnt giraffe & elephant) - all nouns (apart from 'bow' which is bounce/jump/fall etc), all labelling. He's picking up makaton signs pretty quickly but in a similar pattern to the speech - lots of labelling nouns. We're desperate to help him get to the point of seeing language as something useful. He's been oinking a lot over the last two days which I'm assuming is a verbal stim.

He requests by pointing/dragging still though he asks for TV by signing 'Mr Tumble' and yesterday he dragged me into the other room saying 'snake' & he showed me a snake he had made from geomags. The SALT we has last week said there was lots of non verbal communication going on, sound production & good attention (when he wants - he responds to 'look' or 'no' from us but still rarely looks when we call his name) but she suggested we start PECS to get him requesting. We are doing it but with a heavy heart, I can't help but feel that it's a sign that people are thinking he won't develop useful language & that is the most difficult thing for me to deal with emotionally.

He's got pretty good at sitting down when I tell him to but there's still big receptive problems - when the portage woman asked him to help tidy up yesterday he had no idea what she was talking about until she demonstrated then he got it straight away (same with new toys - he won't understand build a tower or turn it over but if you show him he'll be able to do it).

smc/m2fred ... what skills do you work on in the early days when a programme starts?

hi sadminster - been ofline nad not following MN much past week due to housing crisis (STILL unresolved) and ABA.

With my my program the intial few weeks are being spent with tutors 'pairing' themselves to positive reinforcement - basically to get DS onside and excited about their arrival. It is definately working with DS now absolutely aware that these people are here for HIM and takes them off to play with him - he barely gives me a seond glance! From there we will work on manding as well as encouraging him to make new vocalisations. These two things are already being slowly being introduced during hte pairing and we are having some quite good results.

From what you have said about your DS it seems that he has an awareness that he needs adult help to get what he wants - this is a really really good starting place to be as many kids need to be taught this.

Right now in our household the QUestion 'What do You Want?' must be asked 200 times a day and DS has really understood what it means brilliantly. Even when he is not sure how to say the word by using a fading prompt (this is how VB prompts errrorlessly)

For example tonight he has chips for dinner which was a bit of a treat as he loves them but they are a word he does not have a vocalisation for. Holding hte chips in his vision above his plate I say;

What Do You Want? Chips?
What Do you want?...

(DS) dips!

(cue lots of positive praise nad immediate giving of hte chips)

BECAUSE he is well aware of that sentence (what do you want) and what it means, by errorlessly promting him, we are getting some great results and it is not difficult to add a few words a day (though there has to be some prepeating of this so as to make sure hte word sinks in)

RE: PECS - I dont really know much about using PECS but from what I understand they are an excellent tool for bringing on Language and often used in conjuntion with ABA - not to be considered a step backwards at all. THough TBH my consultant leans much more towards Makaton in conjunction with speech for kids who are verbal on some level(as it is more seemless nad does not involve teaching a whole new system). I would say that if you are going down the ABA route to go with the ABA consultant in hte early stages and then down hte track use SALT to compliment it (os this the thread that was discussed on? i forget)

Glad to see you have a sttart date for this month, Im excited for you. I reckon 1 great tutor will be suffice, maybe aim to get someone with experience (a few more pounds an hour) as I see a big difference in my experienced/non-experienced tutors.

bump because I'm enjoying hearing how everyone is doing.

mum2fredandpudding how's it going? Any closer on sorting out the housing issues?

We've had a few really tough days with ds ... 10 days until we see the consultant & then we're off to BIBIC. Can't come soon enough