Here are some suggested organisations that offer expert advice on SN.
... totally bewildered!
I have a 2.9yo ds with a severe language delay (receptive & expressive), some sort of sensory integration issue(s), auditory inattention & who knows what underlying it all. He has some ASD behaviours (I'd be amazed if he wasn't somewhere on the spectrum) but isn't diagnosed - atm our biggest issue is language, then lack of imaginary play. We don't generally have any behavioural issues & ds is pretty happy. He can learn but it seems far more difficult for him than for most children.
I also have an 8yo dd1 that I home educate & a 2 month old dd2. DH works long hours, I have very little practical support, we are utterly skint & live in a tiny house.
With that in mind! I'd love to know more about various ABA - the practicalities really.
- is there any point in doing a program if you can't do 40+ hours a week? We could probably manage 20.
- can you do it yourself? ... silly question but we can't afford to employ tutors atm
- what does a supervisor/consultant do? Train you ... trouble shoot ... provide curriculum? How much do they cost? How often do you see them?
- does it require loads of materials?
- what does a company like Growing Minds do differently? What does PEACH do?
- I noticed the Cauldwell trust seem to fund Son-Rise, what is it?
- what is absolutely the first thing you should do id you're thinking about ABA?
... I'm sure I've got a billion more questions!
ATM I'm working with Hanen & trying to sort portage out, we're going to BIBIC in August. DS has a day a week a a CM (his Grannie!) but doesn't go to nursery.
Yes you could start it yourself and yes 20 hours a week is fine (the ABA profession always tell you that you need 40 , but that's bollocks, although of course as a mum you are pretty much 24/7 teaching your kid something.)
The VB Mapp book gives you a really good way of starting off VB as it's a step by step guide. If you want, I could photocopy the crucial pages and send it to you. CAT me if you want it and I'll get your address.
We've been doing VB with my DS for 3 years and it has changed him beyond all comprehension - he is now speaking (not brilliantly, and still only single or a few word phrases, but still - way better than his non-verbal self before) , reading, writing, using a computer, and his behaviour is much improved.
I don't know enough about the other therapies, but my experience and the experience of a lot of fellow mums suggests that VB or ABA are the most effective options. As Moondog so rightly also points out, ABA is the only therapy around which has real robust research to back up its effectiveness.
I've done various therapies at different times in different ways. Never full time because we simply can't afford it. Ifyou can afford a supervisor it is money very well spent.
When we started my son couldn't imitate. Until he learned that ( aged 7) options were in dome way limited and I believe whatever we did we would have needed some aba. Once imitation came we had more choice. I use different things for different goals. Recently we had a floortime assessment which was helpful particularly wrt ds1's sensory processing issues.
I do like growing minds as they are trained in so many methods. They are also happy to work flexibly and because they will distance supervise can be more affordable.
this website had a good little section on ABA info.
everyone reccomends catherine maurice's book to read first (Let Me HEar Your Voice) on hte matter as a first hand account nad I found it incredibly positive nad emotional
you may have seen on another thread that im starting ABA next week for my 2.8 yo ASD ds1. ABA is basically intensive 1 on 1 behavioural therapy which breaks down tasks \9speech, action, whatever)into simple sections and teaches these one at a time, then puts them together. (bad explanation there)
PEACH, UKYAP, CEIEC anda few others are effectively consultantcies which will set-up, train and periodically revise a program catered to your child.
YOu can absolutely do only 20 hours a week. Some organisations will push for 40, but it is up to you.
YOu cna absolutely do it all yourself (though it is quite intense so even if you could split with a family member or friend to do some sessions it would be worthwhile)PipinJo did 70hours a week all by herself for 6 months! AMAZING.
Generally there are considered to be 2 styles of ABA - VB and Lovaas.
whoops! gotta go, food burning!
mum2fred - so how did you actually set it up? Chose a consultant (how did you chose?), get training (you pay consultant for this), buy materials (VB-MAPP is a 'curriculum'?), recruit tutors if you are going to use them (are these already trained?) ... then just start. I assume the consultant provides ongoing support?
I'm sorry I seem so dim about this but am desperate not to chuck money at the wrong things. Is it worth joining PEACH?
sickof - that's very kind of you thanks (haven't got CAT but will set it up asap if the offer still stands).
Is there a UK ABA yahoo group or did I just imagine that?
Our plan would be 3 hrs a day split between me (mostly), DH & my mum. We might be able to afford a tutor at some point.
I can't get PEACH to email me back, I swaear they think my surname (Peach) is a pisstake.
sadmisnster - we set it up as you said - we chose a consultant who organised a 2 day intensive training days (next week). We have recruited a few tutors to attend these days where training will happen and and a program devised. from there we will start the program and receive regular support from the consultants.
re: buyinf materials - i dont think you actually HAVE to buy anything. Your consultant should provide everything. Books can be sourced in libraries or through you friendly mumsnetter \;0
re: choosing a consultant i think hte key is deciding which method (lovaas or vb) and then speaking to the various consultants for that method and making a choice. Which method you choose is a bit of a personal choice where you need to match the needs of your child. I based my decision on this and on speaking to a couple of mothers who had tried both methods. But contact all of them (PEACH etc) and ask them to send out info packs.
I think there is a general consensus that ABA has evidence backing it up. ANd TBH im yet to come across a parent who has been anything but estatic with it's results. I spoke with my SALT about it the other day nad she was very positive with how she thinks it will work with DS1. She did express concern for it being used on very placid children as she feared it might make some of those simply parrot answers, BUT TBH this is hte only negativity I have heard and not one that applys to my child.
THere is a ABA group on yahoo and I found this to be a source of potential tutors as well as support. As was gumtree (im in london)and especially ABC Therapists. Tutors cost between £7 and £20 an hour depending on experience. There are a lot out there with no experience wanting some. If you go to the trouble of paying a consultant to come for those two days an idea might be to get along a few prospective tutors who want training and treat that as a interview so to speak. We have 6 coming to our days, but have told them that we are only hiring 3 and that we will pay those three for the days in lieu, if they are acceted. The others can take it as free training. If you can put aside £25 a week for a tutor, maybe consider doing this. Our consultant (Duncan Fennemore of CEIEC) has told us that ANYONE can be a tutor so long as they have the enthusiasm and repore with your child.
Where do you live Sad ? I know someone who has experience of a variety of approaches to ASD therapy - and who can offer an independent assessment of what might work best for your child.
I wonder if anyone has regretted doing ABA? It feels like a scary step for me because it seems to be the 'big gun' and if it doesn't work then there's nothing else.
I'm trying to manage my expectations - I would love it to get him talking (... or at least communicating) but I'm realising that he doesn't learn the 'normal' way so we have to try something. It isn't about a 'cure' or even making him fit in, I just want him to be safe & happy.
I'm worried about the effect it will have on our relationship - he gets really pissed off with me if I try & make him do something. I came across a lot of anti-ABA in my late night googling last night
I am sure there are and probably others who regret not trying ABA so you can't really come to a conclusion that way. Like most debates you will get polarised opinions from some people whilst others will admit that there is no one approach that is right for all children.
I know people who regret doing aba. As cyber says there isn't one magic bullet. A lot of providers now are trained in more than one therapy. Our floortime supervisor for example is also aba trained.
Ime you need someone who understands your child. I have found for example those who work well with ds1 are those who have lots of experience with the severe/ older non- verbal end of the spectrum. Without that it just doesn't work for us.
Another therapy very popular right now is rdi. I gave always been suspicious of it's use with older non- verval children but I have now found a mum using it successfully with a child very like ds1. But she said she had to change consultants to find one who had experience of the severe end of the spectrum and without that it was a bit hopeless.
A lot of people start with one thing then switch providers or consultants at some stage.
Did Son-Rise part time for 2 years. Our ds (HFA) was 5 when we started. We think he benefited a lot and it certainly helped us as a family. He says that he really enjoyed it too and wants to do it again.
You convert a room to a playroom and you and volunteers follow the child's lead. However there is a detailed social curriculum and you do have intentions and goals.
We stopped because he didn't need it anymore (and no he is not "cured" - I hate that advertising!). We home ed 3 kids (who have a very active social life) and still apply Son-Rise in everyday life.
The Caudwell Trust fund the 5 day start up courses in UK if you're on a certain income level (see Son-Rise website). I think its well worth any parent / professional attending one of these courses whether they will do Son-Rise or not - there is a lot that can be taken from them and you can ask specific questions about your child.
doh! i wrote a few things and then lost them due to computer meltdown.
Basically was goign to say
- ABA is a big gun, but absolutely not ha last resort or any less valid then many of hte other out there. the reason i chose it is becuase i feel it suits my DS1 and becuase of hte overwhelming positivity of people using it and the statistics backing it up, i feel that it is something I can not miss trying.
- i absolutely dont thinkk it will affect your and your childs relationship negatively. thats is one of those scare myths out there. CHanging any behaviours might involve a few tears and tantrums to begin with, but if hte child ends up happier and more engaged with you and hte world, it is a small initial price to pay. ive certainly not got any feedback that it had a negative effect on parental relationships (in fact most people i asked specifically about this said the opposite!)
- see if you can get your hands on a copy of catherine maurices book i mention above. it is very easy to read and gives a nice overview of an ABA program (tho no specific details). she does talk a bit about 'recovery' from autism but goes to lengths to say at hte conclusion of hte books that all kids respond differently to ABA.
- hate to be controversial but i think there is a fair bit of difference between lovaas and vb. whilst both stem from the same idea, the ideology and implementation differ quite a bit. i have spoken to people from both methods who are happy with their programs and to a few who decided to swap a year or so down the track (electra was one of htem, you can see her story on the first link i posted). But perhaps if you decided to try ABA start up a new thread asking people to describe/recommend etc. each of the methods. But i think that both options yeild positive results on the majority, its about matching one to your child.
if you think you might give ABA a go, try get it happening as soon as possible. with all these things the key is early intervention. Kids starting ABA before 3 1/2 years are meant to be the most receptive
must go - food to cook!
There's published research on Rdi in particular but also floortime now as well. My research looks at floortime rdi and aba ( in passing) and I would say there are pros and cons with all methods. In many ways it depends on what you want to achieve. However, whichever method you use it makes sense to get to grips with reinforcement and the aba literature describes that.
I met someone who collected data on the interventions families used - she administered personality questionnaires and found the therapy used was related to parent's personality rather than anything to do with the child. This interests me greatly because I gave a friend who researches therapies in a different field and has found that effectiveness depends on the user and therapist. Which is a roundabout way of saying trust your gut!
I found this site which has less technical stuff & more practical stuff about ABA www.insidethebubble.co.uk/setting.php ... might be of use to someone.
Does an ABA consultant take into account where your child is/what particular problems you have or do you just work through the set 'curriculum'? For us atm the single biggest problem is ds ignoring everything - his name, instruction, just legging it when he sees something interesting. Can ABA address that kind of issue?
We spoke to Sean Rhodes yesterday - tbh I wasn't quite sure what to ask - he's going to send us some information. We've also contacted PEACH/CEIEC/YAP we definitely can't do 40/week.
How much does the training cost (is it in your house so the consultant can meet the child?)
What happens in the very first session - how do you deal with them just looking blankly at you/walking away/having tantrum?
cyberseraphim sorry I managed to miss your post - we're in Reading. It sounds like what I need someone who'll assess ds & talk about various options.
Training can be expensive, depending on how it's delivered do it's best to shop around.
Yes ABA can address the issues you describe, so will the other therapies mentioned. One of the earliest skills worked on by most therapies is imitation. When ds1 (finally) learned to imitate aged 7 I was stunned at the difference it made, everything became easier.
Consultants should have years of experience so should be able to cope with initial behaviour (if they couldn't cope with a blank look or a tantrum I wouldn't employ them! It's pretty standard).
When we started ABA we couldn't afford a consultant so we started with a very experienced tutor (I wouldn't particularly recommend this route but you can't magic up money - and she was very very good) - I was amazed at how quickly she got ds1 engaged. Somewhere I have his first session on video. can I find it? No. But if I do I'll put it online because it does show a child who is completely unengaged, who has pretty much zero receptive language in the course of one session becoming tuned in and starting to enjoy himself quite actively.
I'm thinking of buying Educate Toward Recovery. I'm too scared to read anything that claims to cure.
Keep saying it is hard but it seems to be getting so bad so quickly. ds didn't even glance at me this morning - usually I get a grin & cuddle - just strolled past to get to the bubbles.
The cost of all this stuff is staggering - I was looking at PEACH training (100+/day) then getting a supervisor to put a program together & doing all the sessions ourselves. I don't see how we can afford to do it any other way.
I found someone in Pembrokeshire that does 5 day training/assessment/programs so will contact them too.
I'd recommend you get in touch with - email@example.com
to discuss options, she is very knowledgeable and experienced in all these areas of early autism intervention and can give independent advice. She is on holiday though so may not pick up email for a week or so. She does work with families in the south of England although not based there. I think the main thing is to try to be patient when deciding what to do, certainly don't feel panciked into signing up for anything too quickly. I think MrsT raised an interesting point about parents' personalities. I am a toe in the water then see results person so I've never felt inclined to dive into a big commitment no matter what was promised at the end of it. I do think there are areas that can be worked on with your DS so try not to read too much into behaviour changes on a day to day basis. Also time changes a lot of things, DS1 used to be a 'blanker' but now has good eye contact and is very attached to friends and family.
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