Here some suggested organisations that offer expert advice on SN.
ABA people - is it for us?(19 Posts)
Background - My DS has a dx of communication disorder or delay. At ADOS they said he was very close to the threshold for ASD in a number of areas, but not others. He doesn't really fit any 'box' although I think in my heart of hearts we will be looking at a HFA or dyspraxia dx somewhere down the line.
We've muddled along nicely (his speech is now on the 'age appropriate' range, OT has discharged him and he's settled well at school). The difficulties that worry me most are in the areas of friendship / social communication / understanding nuance / 'getting' the world.
His behaviour can sometimes be difficult to manage and I think that's where we're failing him. We don't always manage his behaviour the right way. DH thinks I indulge him. I think I'm not always consistent. We all have tempers in our household as well so things can escalate into shouting matches, which doesn't help anyone. DS doesn't get that we are the adults - I don't know if that's because of his condition, because he's PFB or because we're rubbish....
Obvs I'm keeping this as short as possible, there is more, but I feel we need a better system for behaviour, something that's going to give us a grounding for the future as DS grows and can't be 'made' to do things. Would ABA give us this? I've heard people here talking about ABA-light - is that some sort of adaptation for children on the more NT end of the spectrum? And how does it actually work? Any thoughts?
(By the way, I know it is a struggle to get ABA funded so am prepared to pay if its the right approach)
ABA can be beneficial for any child with dev delay, from what I've been advised, doesn't have to be asd. ABA is definitely about consistency so it might help you.
He's been signed-off by SALT Pipin as he's now on normal range. Feckin cuts.
I do still use a lot of the SALT techniques that they taught us, and he has a couple of speech and language groups at school.
You know my next question is where can I find out more about ABA, don't you? I did have a quick google but it all seemed to be 'providers' and I wondered if there was an overall body or source. We're in Scotland if that makes a difference.
Well ABA is for everyone, but the ABA fight is not.
The fact that you are prepared to pay will make things easier but getting it accepted, even lightly into school for some consistent strategies might be hard. And actually it sounds like you need what we do which is for his 'proframme' to occur in a peer setting.
If you go down this route, you might want to call it something else, like 'ds is getting some home tutoring on his areas of difficulty, would it be okay for his tutor to come and observe him in school, and perhaps share her strategies' etc.
I went on a fast track ABA tutor training course by peach to learn more, plus lots of reading, some great books on amazon. Also talking to others using ABA.
DS is 6 Star, does age make a difference? We're about to move to a new school (very supportive and inclusive, at least so far ) and I was hoping to sort of present it as a done deal - here are our strategies, this is how we manage things, can we be consistent - kind of thing.
No difference, but your options for negotiation and flexi-schooling reduce with age.
Your description of your ds is so similar to mine I could have written it.
"friendship / social communication / understanding nuance" and behaviour.
Ds is 4 and a bit, and HFA (? not even sure if this applies. Maybe AS. Or if we were in the states it would probably be PDD-NOS). No speech delay as such, but difficulties with social communication.
We have been doing c.15 hours a week of Verbal Behaviour (strand of ABA) therapy for a year. His progress has been amazing. At the age of 3 he was controlling the household with his tantrums. He could not hold a conversation. He had no friends. His interaction with even familiar adults (eg grandparents) was severely impaired.
He is unrecognisable today. He still obviously struggles in ways (eg anxiety and regulation of emotion) and you can see how hard he is working to get things right (eg asking us to move his sister away if she's interfering with his games, rather than lashing out or shouting at her). And it is becoming clear how literally he sees the world. But he is so much happier. We all are. We can have long, lengthy, abstract converations with him. He has proper friends (at least I hope so). He adores his grandparents and cannot wait to tell them all about xyz as soon as he sees them. His tantrums have roughly gone from once a day to once a month. And he knows what to do to stop it, as do we.
This is all, I would swear my life on it, down to ABA.
Ruth Glynne-Owen (VB consultant) is in Scotland. I don't have her details but someone else (Starlight?) might. I've heard good thigns about her. Might be worht a chat.
The details of how/when/by whom it can be worked into your daily life can be a pita but can be overcome. Even just a few sessions after school/weekends would, I'm sure, make a difference. the key is that everyone who cares for him (you at home, and teachers/school support) have to have a consistent approach.
Lenin I meant to keep up with your thread post-dx, but got sidetracked by our appeal for ds's statement. How is everything going? Are you doing some ABA then? How are you feeling post-dx?
Btw, when I say the ABA fight is not for everyone I don't mean that those who don't do it are less of a parent or anything, I mean that the how, when,where of it are tricky to navigate and so are the prejudices. AND it all requires resources and a level of flexibility and commitment and logistics that just don't fit into every family unit.
However, if there is any way you can do it, do.
There are two pieces of advice I think are important.
1. Choose your provider carefully. The industry is unregulated.
2. Don't hand your child over to someone else to 'fix'. Learn as much as you can from your provider and tutor and try to incorporate the targets into every day life. DS is currently learning how to answer 'how' questions, so we give him lots of opportunities outside of his formal sessions. Once you have learned the main principles it is easy to do in a way that gets the best outcomes.
Yes it will help with all these things if you find the right provider.
Also it probably won't cost much as you only really want a few programmes and you / school can implement these yourselves under guidance.
Can't help with providers in Scotland though. Do go and see some similar children having ABA if you can as not everyone has experience at the more HF end.
Only one person in Scotland has ever succeeded in getting ABA funded - and that took legal action in the High Court. You might not need a full program though (from what you describe) maybe just an overview of how ABA principles can help to manage behaviour. You could google 'Keys for Learning'. It's an ABA consultancy based in Edinburgh.
Thanks everyone, I've come up with Keys for Learning and ABA-Scotland. Need to discuss with DH before we take it any further though! Exactly willow I don't think I will need a 'full' programme, it's stuff to incorporate in every day life.
And thanks also Star, I remember when we first thought DS had ASD being completely at the number of people out there who were (basically) selling snake oil. I'm very cynical! That's why I put the question here first I guess. I really want to be able to trust the answers to 'will this help' before I do anything - it's not even the money, it's exposing DS to things that could upset him without improving the situation that I'm wary of.
Am going to speak to DH this weekend (supposed to be having romantic weekend away ) - he can be quite anti anyone trying to 'fix' DS so will have to see how we get on.
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