ABA here we go.....

[appropriatelyemployed]

OK, after much anticipation, we had our esteemed ABA consultant come into school yesterday.

DS has settled well into a new school. He had a spell before Easter where he was leaving the class and he has moaned off and on about not getting breaks when he asks, but on the whole everything was going really well.

I told the ABA consultant this before she went in. I pointed out clear rules were needed on breaks so he didn't get confused/worked up.

I then got a bombshell when she emailed me back after the visit. She said that he does get breaks and that he was 'manipulating' them to get out of work and that he was leaving the classroom and staff were spending an hour arguing with him to get him back in.

Now, DS is usually pretty straight so I was astonished by this as no one had mentioned any of these problems. I thought the response was really down on DS as if he was being deliberately naughty.

No one had spoken to him about why he was leaving the class and I thought if ABA is about changing the behaviour irrespective of the reason for it that if any excuses for it aren't relevant than so are suggestions about 'manipulation'.

So I pointed out that it is for the adults to manage the environment and if they are letting this happen and there is no rule - sometimes breaks are ok and sometimes they are not and if someone says no you can walk out - this is very confusing.

Anyway, I spoke to her in the end and we agree about changing this behaviour obviously. I feel strongly that DS does not try and get away with things but needs very strong boundaries as all children with ASD (and all children) do.

But I was astonished that no one had spoken to me about this. I speak to he TA every day fgs. It appears the head didn't know it had got to this level either.....groan

I just feel the TA is great and very qualified in teaching terms but doesn't know anything about handling a child with AS.

The ABA consultant said she will keep involved and support the school (she was going to pass it to someone else) so that will be good. Her view is that DS is very bright but that this battle to keep him engaged can undermine his whole ability to succeed educationally.

I never thought it was that bad!

I don't think this is unusual. I met someone whose child was in a special school recently and they were letting the child leave lessons whenever they wanted, to the extent the child was rarely in class. She is now going to tribunal for indep SS and her EP said the level of concessions for her child had reached the point where it seemed he had opted out of education for over 2 years! It was only when she queried why he had not made progress and got a private report she found out the extent of it.
I think sometimes the autism friendly advice given to schools means that children are given choices they simply should not have. Not necessarily schools fault if they are told to provide safe areas etc but then not trained in when its appropriate to use it.
The whole 'should we change the child to fit the environment' or 'change the environment to fit the child' argument. The second option being much cheaper than the first.
I also think few staff are able to tell the difference between genuine sensory problems and behavioural / control problems. DS was dx'd by OT with a raft of sensory 'differences' when as time has gone on he has very few, if any sensory issues at all. They were all behavioural stims, not sensory at all. e.g. I will not step on certain surfaces - not because he disliked it but because he had made a 'rule' that he would not and then stuck to it. So his stims could easily be misinterpreted by the untrained as sensory and him needing a break.
DS behaviour plan has to be changed every few months as he wises up and starts to take the p**s. I don't think its being naughty, I think its typical. My NT 8 year old has got himself sent home with a stomach ache on numerous occasions in the hope he will get to play on the wii all afternoon .

Thanks Agnes. I do trust this consultant as she is hugely experienced and personable but it does feel very disorientating as she is challenging all the 'comfort blankets' of labels we have had.

And I agree, the system is built around 'change the environment' so much (and there has to be an element of that) that you find it is impossible to get anyone to give a child skills.

You also (or I do) build up ideas of what DS can and cannot do up - e.g.. he has hypermobility so he cannot do x, y and z including sitting still.

She was straight in there with 'I am using this card and you sit how I want you to, like this, for one minute and then when I turn it over you can sit how you want'. She said it worked.

But then I am like, blimey, but he has hypermobility, don't force him to sit your way...... scary.

I think the problem also is that he didn't do this at his last school but then he didn't actually ever SPEAK to anyone either!! He would lie on his desk and get left to it. So there is a lot of poor, learned practice to deal with. I challenged allot of it when he was working with me at home but I am not in school.

Maybe, I should sit back and watch how this develops. It is good to have someone else challenging assumptions and what she is setting up is very respectful of his need for boundaries and breaks but he earns them.

He responded very well to that today.

Can I PM you Agnes to see if you know of this consultant?

The more information I have about DS, the worse he seems to be.

Remember your recent discovery about his delayed expressive language for example?

But he's still the same, - you just have more information on him with which to work and improve things.

Sometimes things are bad now when they weren't simply because they've been properly identified and analysed. I have learned to see this as a positive particularly as most of the 'issues' are actually not at all difficult to resolve, once you know about them and have a plan.

hth

yes please do!

TBH I have written lengthy documents referring to DS sensory issues and then I had to backtrack and get it all taken out. Even his statement mentioned them and a year later we had to say actually the OT got it wrong and we believed her. I was completely convinced he had atypical sensations.

We now take the view DS can do anything until it is proved to us that he can't. So far his ABA team have not failed to get him to do anything. Not to say some skills have not taken months or even years, but they always get there in the end. It challenges your own expectations, but in a good way.

A year ago we were trying to get DS assessed by OT for motor skills as he could not hold a pair of scissors or pedal a bike. Now the ABA team have him cutting better than the other kids. Its all down to teaching and repeated practice. If and when the OT ever turns up she will no doubt find nothing wrong and think we wasted her time.

I think it is also the way that ABA breaks things down.

I mean if someone assesses a child and says they can't write, - you might prescribe group writing skills sessions. ABA won't do that, they'll assess right from the beginning what is hindering progress. Is it sitting, sitting at a table, holding a pencil, is it the colour of the pencil, the shape, the brightness of the paper, and almost certainly assess for the motivation at each of these levels.

It can be distressing to hear that your child might have some of these problems when you just thought 'hey they can't write so extra writing group lessons will sort it'. But the first approach will get them writing faster and so is more positive.

Also, don't be afraid of questioning and challenging the consultant. If they are any good they should be able to explain themselves or agree with you a short timeframe for an intervention that you are concerned about with clear data for you to assess/decide whether it is working or reasonable/fair for your child.

Thanks - this really helps and actually it is hugely positive in theory at least!

Agnes, I like that approach. Let's assume he can do it, unless it is proved he can't.

Star, you are right. Breaking things down is so far from what we are used to it is a shock and a challenge!! It is good advise to challenge what you don't understand to. I think the consultant realised she had to be more inclusive with what she is doing as I (and DS) did seem a bit of an afterthought to the intervention.

He is so capable of reasoning but this is a problem in itself - it is his reasoning!

When ds was at his unit they had a chill out room where supposedly all the pupils could go to calm down if needed. By the time he left it was exclusively ds's.At his current school there isn't a chill out room because they don't think allowing the child to isolate themselves and avoid things is a good strategy rather they give the skills to cope alongside their peers.Interestingly enough it's only now he can't isolate himself that ds is seeing the benefit of and having any interest in his peers.

That is interesting insanity!

I have spent so long fighting for people to see his differences and accommodate him that you are then left with a 'what now' feeling. How do you get him learning and included?

This is why I turned to ABA. It is interesting to think that it is all up for grabs and I suppose if he won't do things despite the motivation, you know it's a real problem?

That is what he is like at home anyway. You can get him to do most things by motivating him but when he really digs in deep and battles, it is usually because what's on offer is not enough to motivate or the situation causes genuine distress.

They started doing the 'sit nicely for one minute' thing today. DS did not like it.

Did anyone else find it really hard when you are told that your child can not sit nicely because of hypermobility etc and then get confronted by this challenge?

I hope it works!

I am surprised at the term 'nicely' (if that is what is used).
'Nicely' is not a behavioural term. It doesn't mean anything.

A defnition of what an adult means by 'nicely' is needed (eg both feet on the floor, bottom fully on seat, hands on knees).

Sorry that is me paraphrasing after an earlier post in the thread. Direction was given as to how he was supposed to sit.

I feel that the assumptions (and reports) on which we have based our world will be challenged.

Don't get me wrong, I have gone into this as I think it has a good chance of really helping DS achieve what he is capable of, but it still feels more challenging than I expected.

It feels like - it this works, I have wasted SOOOOOOOO much effort (and money) getting to this point.

I agree with what agnes said about assuming he can do things until he gives you reason to disprove this.

I certainly know that when some people first meet my ds, their expectations of his abilities (in many areas) are way, way, way lower than they actually are.

The great thing about ABA that it does challenge this.

Sometimes consultants (and tutors) can appear to ignore the parent or suddenly realise they have been doing so - but I think this is often because they are so focussed on the child.

Haven't had experience with hypermobility, but 2 years ago we (nursery, paed, us) all thought ds needed OT for fine motor delay/problems (couldn't draw pictures etc). ABA sorted this out within 2 months.

That makes sense bialy....I think the focus is on changing the child and maybe bringing mum along too seemed a bit secondary. But DS is so verbal and argumentative, if you can get him onside with changes, it can be alot less stressful!

As it is, now he knows what all this is about, he can see the point of structuring breaks and likes the security of the system with its guarantees.

Very simple, very effective.

Changing things like his floppiness and the way he sits seems revolutionary to me.

It has changed my perspective and raised my hopes.

It's always easier for inadequately trained people to blame a child's problems on something within him/her. In that way, attention is deflected from the fact that thry are not able to do thier job-it's the dyslexia/ADD/LD/hypermobility/sensory issues blah blah blah that are to blame.

It also means there is a flurry of deceptive actibvity in going to meeting, referring, liaising, monitoring, reviewing and all of that meaningless guff which again deflects attention from the fact that in actual fact, nothing is being done.

ABAers don't hold for labels.
I couldn't give a hoot really what a diagnosis is.I am only concerned with what the child can and can't manage and working out how to get them to do what they seemingly can't do.

Very interesting. It does shift the ground beneath your fit a little. Labels are what the system relies on!!!

Exactly. In order to perpetuate, nay even expand the very areas which the industry purports to exist to address (refer to Parkinson's Law)

That should be 'beneath your feet' obviously!

We are so lucky to have a head willing to advocate this - indeed he has now paid for another child to assessed!

And he has read the evidence - yes, in his spare time, he read ABA research papers!

I want to swear lots - in a good way!

Omg what school is this which has such an enlightened Headmaster? I might have to move there.

ae, - you're missing the webchat!

What webchat?

Honestly, he is AMAZING. AMAZING. Always got the time of day for you. Makes you a coffee, chats through any issues, never takes offence or feels challenged and gets defensive, welcomes you, believes you, follows up leads, wants evidence based interventions and CHALLENGES his LA. Yes, stands up too his LA for his kids.

AMAZING.

webchat??