ABA and reasonable adjustments: how do you decide?

[inappropriatelyemployed]

I'm interested in hearing people's views on how you decide what behaviour to change with ABA.

Obviously, you want to empower the child to develop skills, and moderate behaviour which is affecting a child's ability to function at home or at school.

But I always wonder about where you draw the line.

For example, we have a therapist coming into school. DS has various quirks and props which get him through the school day and some behaviours which cause problems. He also needs help with social skills and communication. The traditional LA OT/EP line is to accommodate things rather than give the child the skills to cope, but I think there are areas where DS is better off being accommodated than learning to integrate, for example it is important he is able to feel confident about saying he is stressed in assemblies and feels able to participate it he sits in a chair a distance a way.

This is a temporary measure specific to the school environment and it teaches DS to feel that he can participate, albeit not necessarily in exactly the same way. His peers don't care and happily accept this. HIs TA doesn't like him being different.

This is a learnt behaviour but it is so far down my list of problems, it isnt even on the list.

Am I right in thinking that ABA seeks to work on behaviour changes which are important to the child rather than the adults around him?

I agree Hothead. But why is that so hard? Why when I come here, people agree and yet you go to school and you have the same discussion again and again. Why is it so easy for those who get involved simply to speak to the teacher and say what do you want?

I am not saying that is what happened and I bent the guy's ear for long enough. But he did initially see it all as non-compliance or talking in terms of him wanting to have it all his own way.

Yet, he is so rarely non-compliant and he is sat there saying 'I am anxious today, today I can't do it'.

I hope out of this comes an agreement on what to push and what not to otherwise they spend their lives lighting fires they can't put out and then his TA goes 'rogue' no matter what she is directed to do.

On our ABA programme the thinking at the moment appears to be that we pick our battles about change.

Things that are seriously getting in the way of his/the family's life or health and DS's learning, need to be addressed fully and with all effort (example was his headbanging whever anyone left the house, which is now, after many months of very hard work, down from literally hundreds of bangs a day to one or two at most).

Things that can we worked around for the moment as they are not essential, and can be avoided with a reasonable change in the environment, like moving things in the house, or just not doing certain things, should be adjusted for (example is taking him to a restaurant and expecting him to stay on a chair, which leads to tears, both his and mine, and is not worth the battle right now; or taking him to people's houses for the evening, which leads to broken hi-fis and TVs, and a mess up of his his routine).

(PS our programme is at home and nursery, not school)

Thanks. I think that is what the ABA consultant will do. Set out what is worth changing and what isn't for now.

But the upsetting, gut wrenching thing about it is, I let people tried to persuade him to go into the class and watched him get more and more upset. I then left them to it for 45 mins as I wasn't supposed to be there in the first place. But I think this made things worse.

Why do I always feel guilty and on the backfoot when most of the time I am the only one who knows what they're doing with him? I let myself be squeezed out by what I though were their perceptions of me making things worse when I probably could have calmed him.

It was all the chat about non-compliance and doing what he wants which made me feel like I had to show I don't indulge that. Yet I know I don't and all the did was mess his head up for the morning.

I did say the grown ups have to decide what they want the child to do. How the hell can he understand when there are mixed messages.

But if I'd have said he doesn't go into class on days like this but bounces back, leave him, I am sure I would have been accused of enabling is behaviour.

I just felt I let him down really badly. If you can't trust your mum, who can you trust?

Sorry, I'm so tired and emotional at present, tax bills, bills for OT and ABA and Tribunal and my work life massively compromised.

IA I don't know really what to suggest now. YOU are doing everything right, but you're a lone campaigner in a culture that doesn't think it needs to change.

We are all lone campaigners. It's fecking tough. It takes every scrap of energy to make 1% of the change that you know needs to happen, but the 1% is worth it because it is your child.

I bowed out of that, but there are problems with my chosen path too and I have failed my ds to some extent by not continuing, but I doubt I could have sustained the required input and I have other children that were being failed.

I believe ds isn't doing as well as he should be, but I believe he is doing better than the best I could achieve for him in the corrupt and ignorant system. I know that secondary is around the corner for you and I would urge you to look beyond what the state can provide, at least to rule it out.

Thanks Star. I will look at anything suitable but after the Stanbridge Earl debacle last week, I don't know where to start with the independent sector. This school was just down the road.

Ring up the Cambian lot and ask for some names. I don't think their schools will be suitable for your ds from what you have written about him, but I bet they know the market and competition well in that area.

They'll probably know the states that they have taken children from, and on ocassion supported transitions into.

Thanks. I am exhausted with it all at the moment. Bloody Tribunal again for paltry few hours and specific OT - why? Because the LA can despite the fact that they have no evidence.

This means I have got witness statements/evidence to sort out this week.

I feel like I am the only one who understands him and yet that sounds so arrogant and it is so unattractive as an approach to professionals. I will never let him down again like this. I don't care what the stupid NQT and miserable TA think of me, I will do as I think is right unless it is shown that there is a better way.

Moondog - now you have posted on my thread, it would be great to hear you suggest what you think I should do. Move schools again? Where to?

How can I work openly and honestly when people resent my involvement and don't do what is recommended? I am as up front as I can be but they have other agendas.

I am afraid with children like my DS they pass so well for 'normal' that no one cuts them any slack and then everyone is taken aback when they do something which isn't 'normal'.

I wouldn't presume to tell you what to do.
I don't know your child.
What I do know however is that there is no happy future for you or your son if her remains in a school being looked after by staff you refer to (rightly or wrongly) as 'the stupid NQT and miserable TA'.

Moondog - thanks. I value your opinion highly as I hope you know.

I get your point. My frustration is talking after a very stressful day but there lies in it the truth of how I feel and I just don't know what the answer to that is.

This is a lovely school.

DS2 is very happy.

The head while he is still with us could not be better.

Yet, there are almost daily issues with DS1. The teacher is new and very young. She gets frustrated. The TA is older and more experienced but teaching DS seems to revolve round what she feels and she takes things personally. She wants to 'push him' but has no strategies/skills. Hence the ABA to help.

And in front of me I see how different it can be with the other TA who is enthusiastic, supportive and engaged. She reads and researches, does stuff at home and has such a fantastic relationship with the other boy, she has changed his life.

Me, I see two churlish faces when I go to pick up. DS and TA. Now always but sometimes and I don't know how to change that.

Can your ds' TA shadow the other TA for a couple of days?

Can they swap now and then?

You won't change that.
I don't see how you can claim it is lovely and your son is happy when you post over and over again of your contempt for these people.
Even the loveliest headmaster has terrifyingly little control over what goes on in a class.

I don't mean to be rude or unkind. Believe me, I know what it feels like to suffer knowing the people charged with education your children aren't up to the job.

I just see you posting the same thing over and over nad over again and nothing seems to change for him or you.

IA isn't at the beginning of this journey though.

Like many of us she is on no.x school. Investment upon investment of time and energy and education, logisitics, money, advice, education has gone into trying to improve things for her child. And at the end of all of that, it is still crap!

What next?

(rhetorical question really)

I just wish there was an answer. A clear pathway. Do this, and your child will be alright, and you can have your life back......

The disability, - it's a shock to the sytem, but it is NOTHING to what comes after.

That is a good idea. I will raise it with the head. I think the whole thing is so senstitive though. No one seems to want to interfere. The other TA is much younger but perhaps if it were put in the context of shadowing to learn about ABA.

They couldn't swap though. There is no way in hell our TA could cope for 5 mins with the other lad.

Moondog I do NOT post over and over again of my contempt. That is very unfair.

This is the first thread in a very long while that I have posted about school.

I am entitled to let off steam here aren't I? As Star says, I am not on the beginning of the journey and I am wise enough to know that there is no such thing as a perfect setting with perfect staff and you will always get non-believers and defensive staff or those with their own agendas, or those who don't care.

I can't leave school every time I meet one.

Perhaps if the other TA 'trained' her to cope with the other lad. I mean, TA's shouldn't keep their skills to themselves. Perhaps she'll be relieved to come back to your ds and realise she is flippin lucky.

As close as you can get to whole-school change/understanding is what will make things better for your lad and others who come afterwards. That means sharing the knoweldge and training.

You can post what you like and say what you like.
That is what this place is for.
But you asked me what I thought and I am telling you.

That's fair but please be equally fair and don't say I post the same problem again and again because that is just plain wrong.

I speak with contempt through frustration but this is a problem which many face to which there is no easy answer. So if you have answers or suggestions do provide them. Otherwise, I will have to stick to intermittent whinging as there just is no holy grail and you have to work with what you have as best you can.

Star thank you. That is a good idea. Our TA seems to have time on her hands. I will suggest that they at least have a session together.

You misunderstand me.
It is not so much the contempt with which you speak of them that I refer to (and from the sound of it, you have good reason to feel contempt. They sounds bloody appalling.)
It's more to do with the fact that you come back over and over again to the issue that you do not feel you can collaborate with or see eye to eye with the TA or teacher.

They won't change.
If anything, they will just dig their heels in firther and further.

However I apologise for adding to your enormous stress and upset.

No Moondog you haven't added to the stress. You have helped me so many times and as I say, I really value you what you say.

I haven't moaned about the TA for a very long time though! Really I haven't. I try and work through it but sometimes you hit a wall and the lack of understanding I complain of seems to be prevalent so I will have to persevere.

Hothead I hope you are right! There will at least be an attempt to pull everything together.

I haven't posted on this thread before as I really didn't know what to say having hit a similar brick wall of utter exhaustion with how bloody difficult it can be to get the simplest thing done. Last year had some major ups and downs, and was bloody hard work but the end results were more than worth it. DS made such dramatic progress that I think he is believed in certain quarters to be "cured" lol!

I had what I hope was a productive meeting with school yesterday and it may lead to the changes I need. Time will tell. DS is 1/2 way through year 4 and I'm really not sure that a move to school 5 is the answer at this stage, given the transition to secondary is looming. If my latest stand hasn't sorted it then not home ed will have to be the answer for a year or 2, now that DS is finally able to at least attempt some mainstream leisure activities with support.

I can only suggest that you smile sweetly and put as an end of year target that your son's chair will be moved to the end of the row of children in assembly. The winter term target could be to get him to sit on the floor at the end of the row for 5 minutes of assembly time. He could then aim to sit for 15 minutes by the end of the summer term NEXT year.

This way you are agreeing with her to boost her "oh so much more important than your child's welfare ego", without agreeing to implementing anything that is going to upset the applecart in terms of his genuine targets. In the overall scheme of things where he sits for assembly is so far down the list of priorities it doesn't even bear thinking about as it's not something he'll have to do in adult life.

I am aware of the length of the Tribunal process, and how it can limit your options towards the end of Primary with regards switching to the Independent sector(who wants a stressful 18 month fight for a place your child may only attend for a term?) My son's school is set to go to split site and double in size next year - I have already aired my considerable doubts as to whether he'll cope to the authorities.

Have you given serious consideration to home ed? Are there other venues where your ABA programme could be continued for social skills other than at school (Scouts, swimming lessons, local home ed groups, sympatheic Sunday school, riding for the disabled centres etc, etc). Would this be an option for you until secondary as it isn't long now? depending on where you are on the social skills front will have a lot to do with how viable this could be. For me it just wasn't viable last year, as DS lacked the skills to exploit even "SN children's clubs".

It would still take serious work, but I do feel less stressed now I have home ed as a well-researched concrete plan in my back pocket to pull out and use if I am forced to. (My plan did involve some SERIOUS thinking outside of the box to make it viable, and it isn't a magic bullet.) I'm in London, so if I am prepared to travel I can exploit services offered for peer social interaction in other local authorities relatively easily. This just isn't an option for rural dwellers, or other parts of the country I know.

Sorry for the lengthy ramble, but I do so empathise with you.

HONKING!