More ABA

[springgreens]

Hello All,

I'm new to mumsnet and have just posted a longer message, but it doesn't appear to have worked. Apologies if I've posted twice.

Has anyone from Kent had experience of running a home programme on a low income?

Thanks for your time

Right, I think I know what I'm doing now.

To give you more information. My son is 3 years and 5 months old and has a diagnosis of ASD. We received his diagnosis a week before his 2nd birthday and despite working really hard at home and to access the scant local provision for children like him, he has not moved forward. The 'professionals' involved say that he's making great progress in that he has learnt to exchange PECS for a few things, but there is no real motivation to communicate here and he just seems to be getting further and further away. ds attends a specialist nursery and mainstream playschool with 1:1, but he isn't accessing the latter effectively given that he spends most of the mornings there flicking through books (his obsession)and gets very upset when he is moved on. He has virtually no play skills and seemingly very limited receptive language. He says a few words when prompted. He's a very placid little boy and is very easy to overlook in a group.

ABA feels like the only option if I'm to make a difference to ds. (Socci I've found your posts about your dd very compelling) At the moment I feel like I'm banging my head against a wall on a daily basis failing to reach him - it's very difficult to fill his days. He isn't learning and it's so stressful when you feel powerless.

Kent LEA have never funded ABA historically however and I am a single parent on a very low income. I have savings enough to pay for about a year of the programme and friends and family will hopefully work as tutors. Do you think I should give up on this now or go for it? The people working with ds are really against the programme and feel I would be risking his happiness/putting too much pressure on him in going down this route. Have other people experienced negativity like this??? Is there any risk that the programme could threaten ds's happiness and push him further into his own world?

Any thoughts and advice would be greatly appreciated. Also is there any one in Kent who I could make contact with?

THANK YOU all for your time

I'd go for it, if you can afford to run it for a year you have a chance to prove its working. I would say that you need professional reports to act as your proof though, and that you may need to pay for those Lots of people on here have experience of that though.

I found a good site yesterday that had downloadable data sheets etc- I'll see if I can find it again. Also Help me (us?) learn is a good ABA programme co-ordinator thing if you are running a lot of it yourself.

here

and here's help us learn

Hi springreens, I say go for it and maybe think about doing an ABA programme part-time? Yes, ideally, it's great to do 30+ hours a week but I believe that part-time can still be effective. My daughter's consultant (she has done a programme for nearly 3 years now, now doing pt programme and pt school) certainly is up for coming every few months or a few times a year. What you need is a good supervisor, expensive, but not as expensive as having a 'workshop' with a consultant every month. I also know a very good lawyer and private ed psych if you need them. I'm sure Kent were involved in a new study about ABA and its effectiveness that concluded it IS effective for 20 hours a week plus a nursery placement which could back up your argument. Wouldn't you get legal aid? In which case, mega stressful though it would be, you could fight for funding. I've got lots of stuff I am happy to share. Have you done an Early Bird course? This I also found really helpful.

Hi.

I can't help you on the ABA front... But if its something you feel would work for your son, you need to look into it, and just because your LEA hasn't funded it before doesn't mean they never will!

I'm not in kent I'm afraid, but my son is a couple of months older then your ds, and wanted ot say, that whilst it doesn't seem much, him learning to exchange PECS is an acheivement.
What other methods are you using with him?

We borrowed a VHS copy of 'more then words' from our SALT, and have since bought the book from Winslow as whilst its comon sense its handy ot have a reference point... and honestly, that has beenthe most helpful thing we've accessed with a view to helping our son.. It describe how to make opportunities for comuncation, it almost teaches the child to be motivated if that makes sense, and it also identifies the different stages of communication so you can gear your approach appropriatley.

We currently use Makaton signs alongside very basic simplified language when talking to our son, and are moving onto PECS symbols instead of photos or the more lexical Makaton symbols, and after a year of signing to our son, he has in the past few weeks started to make sense of it, and he's started echoing speach and even uses 3 words and signs together properly, his SALT was in raptures about that, telling us how brilliant nad amazig this acheivement is... which it is, but 'aeroplane, rainbow and zebra' are not gong to get him very far in life... what I'm trying to say is whilst you feel like your losing them, and nothings working, they are taking things in and what seems like a ridiculous pointless exercise does pay off in the end...

Most likely someone wil have posted soemthing more relevent and helpful in the time I took to type that!

I have waffled a lot, sorry.

take care

emma x

Are you SURE that Kent has not funded ABA before? LEAs are always telling people that when its not true. Have you joined the Yahoo EGroup ABA-UK? You could ask there and you must join PEACh if you haven't already and ask them too.
I saw a presentation by the women who run that pseudo ABA/eclectic program in Kent and I wasn't impressed. After the meeting I emailed the head of the group I attend (Camden's Autism Advisory Group, I am the Parent rep) to say how rude I thought they were about ABA and parents who do ABA and, if they have something useful to say, they shouldn't be slagging off other methods (esp one that's proven) and take the piss out of parents I've still got the info somewhere, could dig it out. It was a joke, I think their program offered "up to 12 hours a week" or something, I wouldn've been swining from the rafters with so little help, never mind what DS would have been doing (there was no provision here to fill in the gaps then, and little now).

I like the idea of you 'swining' from the rooftops Davros! I think you're right to fully investigate whether Kent have funded before. I've not heard of the psudo programme in Kent. What was that?!

Wow, thank you all so much for getting back - it's a great feeling to actually get questions answered (and from those who really know)!

JakB- I have done Earlybird and found it really useful too. Any info on funding/ABA that you're willing to share would be fantastic.Also do you know the ref for the ABA study you mentioned?? That sounds as if it could be really useful

Getbakainyourjimjams - Thanks so much for those links.

emmalou78 - sorry for sounding so negative about what ds has achieved - I am pleased about the PECS - and it's good to be reminded of how much they're actually taking in when you think you're slogging away for nothing. Thanks for the More than Words ref too. I read that a while back, but will definately go over/applying it again more carefully. Aside from PECS I use photographs, objects and a few basic signs to reinforce my speech. How large is your signing vocabulary? I find it hard to stay motivated on this front as ds really doesn't look. ds has been on a CFGF diet for over a year as I really believe that he reacts to certain foods and before I made these changes he was constipated, bloated and very farty.He was also self-limiting what he ate more and more and the change has made his diet more diverse. It's a stress, but worth the effort.

Davros - Thanks for the pointer. I haven't heard of that group (is it the autism centre, orpington?) but have joined PEACH who seem to be pretty professional. I'm interrogating kent over funding despite their history.

Socci - I really agree with the 'egos' thing grrrr.

THANKS AGAIN will keep you updated

No worries springgreens, we are all here for you!

springgreens.

my signing vocabulary is probably quite small, I wouldn't think I know more then 100, but we've deliberatley aimed for the 'key' words, and things ds is motivated by [animals, transport..]

I worry that using 2 alternative methods of communication is too much for him, but he's finally responding, albeit very slowly I wonderif maybe its a good thing, cause he has the option to just blankly hand you a card if he doesn't feel like the direct 2 way interaction that signing and speaking entails.

Sorry If I sounded like I was telling you off, I wasn't! I'm as guilty as anyone for not thinking my sons ever going to make progress, and feeling a bit let down when the progress he does make is so small... I was trying to sound encouraging!.

I hope you can get some funding from your LEA and start up the programme you want to use with your son, in the meantime keep plugging away and take care.

emma x

springgreens.

my signing vocabulary is probably quite small, I wouldn't think I know more then 100, but we've deliberatley aimed for the 'key' words, and things ds is motivated by [animals, transport..]

I worry that using 2 alternative methods of communication is too much for him, but he's finally responding, albeit very slowly I wonderif maybe its a good thing, cause he has the option to just blankly hand you a card if he doesn't feel like the direct 2 way interaction that signing and speaking entails.

Sorry If I sounded like I was telling you off, I wasn't! I'm as guilty as anyone for not thinking my sons ever going to make progress, and feeling a bit let down when the progress he does make is so small... I was trying to sound encouraging!.

I hope you can get some funding from your LEA and start up the programme you want to use with your son, in the meantime keep plugging away and take care.

emma x

Springgreens, can you find out if there are any Makaton courses in your area? Our CDC used to do them and local charities do them too. My functional signing vocab with DS is nowhere near 100 as he doesn't use that many. He also uses PECs and Makaton and I think it works extremelely well as each has its own limitations. He can ask for many more things in PECs with access to a bigger vocab, other people can understand it easier and, once its "said" its still there as its a picture. BUT with Makaton he can be much more spontaneous and doesn't have to lug pictures around. We all use more than one form of communication don't we, so why not our kids too if it works? As for being confusing, I think I would be careful about introducing both at the same time, but then you can use one to reinforce the other iyswim.

sorry, dodn't point out that ds has only used about 15 signs in the 13 months we've been using them. And he only uses aeroplane, rainbow, biscuit,bird and car/bur off his own back! the others are 'echopraxia' but its a start.

Your SALT should be able to get you details of local courses, where I live, they only do full day one courses that you have to pay for.. so I rely on my makaton book, the SALT and our oddly hairy SENCo to clarify them... If nothing else makaton has given my stupidly flappy hands somehting functional to do whilst I talk!

My DD just didn't get makaton. She got the sign for biscuit and used it for everything and didn't pick up any others. Mind you she is ONLY JUST beginning to imitate so you never know (but that whole mirror image thing and getting all your find motor skills together- even I find it hard!). PECS is much more DD and she is doing really well with this. We do sign for 'input' but only key words really. Springgreens- do you want to call me or me call you?

That would be fantastic jakB if that's ok with you.

I don't know how it works in terms of getting your number to me? Would you post that?

I've never bothered about the mirror image thing and nor do most people I know, it doesn't seem to matter once they "get it". She may have chosen biscuit to repeat in the same way that lots of kids do with "more" so everyone, be very careful teaching "more", better to teach the items iyswim. "please" is another one. The courses run here are usually free or cheap for parents.

ds1 has never picked up sign either JakB. His imitation is getting better, but remains poor- his motor planning in general is poor.

DS3is signing though

Sorry Davros, didn't mean using a mirror! Meant that I find it hard to copy things with somebody in front of me. That's interesting about your DS, jimjams. We really, really tried with DD but she just didn't get it.

Mirror neurons! Ds1's most definitely are duds- lots of new research on that these days but I think it's key to ds1's problems. see here

and more

FASCINATING!! Thanks JJ. I definitely have faulty mirror neurons too. For instance, in a yoga class I can copy no problem if they instructor if the same way round as me but if he/she is opposite, I find it really, really difficult. Think DD obviously finds it impossible. Which is why she learns, I suppose, so much through hand-over-hand teaching and fading.