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Why do I feel so anxious? I KNOW we are doing the right thing...

(21 Posts)
silverfrog Thu 29-Oct-09 09:41:36

So, dd1 and her schooling (again <sigh>) I have a feeling this might get quite long, as want to get it all down, so sorry.

A year ago we moved counties to put dd1 into an ASD pre-school. We hoped that she would settle nicely, make some progress, and then take the natural follow on path to local ASD school, of which there are 2 - both excellent at what they do.

dd1 has settled well (but tbh, she never really has an issue with settling) but has not made any progress. at all. the school, and her ed psych, both witter on lots about how she is learning the social side of things, and how there si more to learning than the academics. well, yes there is, but dd1 has never really had an issues with compliance at school - she readily sat at circle time in her mainstream pre-school, and at snack time, and lined up nicely to go outside, etc etc. no behaviour issues at all, unless you count the fact that she was passive to the extreme, and didn't actually engage with anyhitng. and ti wuold seem that school and her ed psych don't count that. and dd1 also has no issues with being social either - she does, obviously have difficulties understanding some situations, but on the whole, she is doing really well.

we have had numerous issues with the school over things which they just can't accept affect dd1, because she does not make a fuss when she is with them. I can see their point to a cetain degree, after all, if dd1 doesn't tell them she doesn't like something, how are they supposed to know? but the fact is, she does tell me, and I tell them. and at that point, if it is something that has affected her deeply, I expect the school to take note, and believe what I am saying. these are issues which affect dd1 only, and not the rest of the class, or the way the school is run, and so I don't htink I am being unreasonable in my expectations. the last time I raised an issue with them, over something that had scared dd1 a lot, I was told that I shoudln't be discussing the issue in front of dd1. to say I was angry is an understatement - of COURSE I wanted to discuss it in front of her (nicely, and calmly) - I want her ot know that when she tells me that something has upset her then I will try to help to sort it out. the last thing I want is for her to not think tellign me when she is upset is worthwhile!

so, anyway, we ahve long been convinced that what dd1 needs is ABA. we ran a programme last year, before we moved counties, and dd1 made brilliant progress. we struggled to find tutors after our move, but have recently managed to re-start dd1's programme, and once again she is leaping ahead. we are obviously in talks withthe LEA to get ABA on her statement, but as you all know, hell will freeze over beofre that happens withut a monumental fight.

we have found an ABA shool for dd1 to go to. and we can (with an enormous re-adjustment and tightening of belts, selling dd2 into slavery etc etc) fund dd1 there while we fight through Tribunal.

and so, dd1 is not going back to her current school. and now I have to tell the school that <gulp> - why on earth am I feeling even slightly nervous over doign so? It is so stupid. I have the evidence daily before my eyes that what we are doing is right.

But it would be nice if someone, anyone, would tell me that we are doing the right thing.

cyberseraphim Thu 29-Oct-09 10:23:12

I had a similar although watered down experience of what you are proposing to do. We took DS1 out of a nursery placement that was supposedly suited to an ASD child. I had known for months that I really wanted to do it and as soon as a trigger came - an incident too far, I took the final step of removing him from the nursery. We kept him at home for a year and employed various people to help us look after and educate him. It was definitely right thing for us to do and even the Ed Psych who had a bit of a down on him due to nursery reports admitted that he had developed more than she had expected. We had to make sacrifices of money and time but it was worth it a hundred times over.

grumpyoldeeyore Thu 29-Oct-09 12:03:23

My DS copes well with mainstream nursery but the same lack of progress. We have been running ABA programme at home for 6 weeks and the nursery and his speech therapist have been amazed by the difference in him in such a short time. There are no crystal balls with ASD and all we can do is to look for the best way for our children to learn and if we find a way grab hold of it for as long as it lasts. The research can't predict which children will make progress with which approach so trial and error is all we have. I think with the children who are quite passive the LEA don't get it - they are used to throwing their resources firefighting behaviour problems and don't seem to grasp that the passive kids need to make meaningful progress too. Until LEAs bring ABA into mainstream we are stuck with having to make these sort of choices. I hope it works out for you - in our experience so far ABA has been amazing for DS.

debs40 Thu 29-Oct-09 12:14:48

I completely understand why you're feeling like that as it is hard to make a decision which others will question. You feel like you are going out on a limb and it takes alot of guts to go against the grain.

But you know you are doing the right thing and it doesn't matter if others don't get that. They don't walk in your shoes and their priority, to be frank, is not your child, whereas yours, of course is.

I agree that the perception is that if a child is doing ok and not causing problems, there is no need to offer help. I have the same with my son who has recently starting explaining what upsets him and what he can and can't understand. The response I had at one point was that he should come and tell the teacher if he has a problem. That was never going to work.

I am envious. I would love to tell him he does not have to go back to school and I know he would come on loads just having one to one with me.

You have to do what is right.

How do you access ABA? Is it helpful right across the spectrum?

mummysaurus Thu 29-Oct-09 14:01:12

I think in a subtle way we end up feeling so grateful that there is any provision for our sn children that it feels somehow rude to reject it however good our reasons.

It really sounds like you are doing the right thing and you'll feel better once you've done the deed.

silverfrog Thu 29-Oct-09 14:10:32

thank you everyone smile

I do know we are doing the right thing, but as has been pointed out - it is very nerve-wracking to be so out of step with everyone else (even when you know deep down it is everyone else who is wrong wink)

we are doing what dd1 needs now.

who knows what she will need in a year, but it is now that counts.

I probably felt exactly the same last year when we uprooted to get dd into where she is now was..

It is just so unnerving when you have so many people telling you that the place you have is the best you can expect.

It is a done deal - all we need to get sorted now is the start date at the new school, which should be next month. and of course get through the extended half term period now that dd1 is not going back <gulp> still, we have holiday booked for the end of the month, so only a couple of weeks really <trembles at the thought>

debs - ABA is certainly helpful right across the spectrum. In fact, it can be helpful with all children, whether NT or SN, and irrespective of which SN. Have a search on here for threads - there are quite a few of us running programmes, using a variety of providers.

If I can help ina ny way, do ask and I'll try to answer any questions. It has been absolutely lifechanging for dd1 - it really is the only way she has ever learnt anything.

cyberseraphim Thu 29-Oct-09 15:16:52

I agree with MummySaurus - there is unspoken pressure to be grateful for whatever is provided even if it does not meet your child's needs.

TotalChaos Thu 29-Oct-09 15:59:01

without a doubt you are 100% doing the right thing. us parents know our kids best and whether they are happy and progressing at school. it's scary when you don't have the professionals backing you.

StarlightMcKenzie Thu 29-Oct-09 17:03:14

Message withdrawn

silverfrog Thu 29-Oct-09 18:36:13

thanks again.

I think I have identified what it si that is bugging me. in one of our meetings with the school over the summer, where dh & I were expressing concern over dd1's lack of progress, the head of school said to us to give it time. that we couldn't just move dd1 again. that to keep uprooting her would be unsettling, and that we cuoldn't keep chasing something that might never happen (ie dd1 progressing at school). she asked what would happen if dd1 didn't progress again - when would we be satisfied?

well, I have been mulling that over this afternoon, and apart from the fact that I know that dd1 will make good progress at her new school (our ABA consultant is closely involved with the school, and is in fact adviser to the school. so we know that the "style" will suit her, and that she will ineffect be getting a continuation of her home programme in a school setting) - apart from that, well, actually yes I can keep "chasing" things that I think will help dd1. that si our choice as a family, and tbh, given the fact that no change of house is needed this time, then it isn't that big a deal really. dd1 will go to a different school, and I'll have a bit longer commute. that's not exactly asking for the moon, now, is it?

and, imo, and for us as a family, it is a whole lot better than sitting back and accepting things which are quite patently a load of nonsense like the fact that we should accept that maye dd1 will never progress at school. this is jsut not something I accept - if dd1 can (and does) learn at home, then it should be possible for her in school too. we just have to find the right one.

silverfrog Thu 29-Oct-09 18:37:50

oh, and Starlight - I fully expect the LEA WILL remember us in years ot come - an unusual name coupled with a PITA parent means we are fairly unforgettable grin

(but I know what you mean, and agree wholeheartedly)

StarlightMcKenzie Thu 29-Oct-09 18:51:58

Message withdrawn

silverfrog Thu 29-Oct-09 19:00:39

well, that's mostly why we are selling our souls to get dd1 into ABA school, tbh.

we hoped against hope that dd1 would progress at this school, as it would have made our lives so much easier, but by around April or so it was clear she wasn't doing so. If we hadn't had so much trouble finding tutors, then she woudl ahve been out of there months ago.

but I agree, the expectations are pitifully low.

and this form an ASD pre-school <sigh>

moondog Fri 30-Oct-09 18:14:34

YOU ARE DOING THE RIGHT THING.

15 years of being in the fiels of SN and I know that most of what is offered, while well meaning is completely useless and has fuck all evidence to back up its use.

Ball pools, sensory rooms, teams of 'specialists' traipsing in and out, IEPs,music therapy, riding for the disabled.....waste of bloody time all of it.

(Ask your education authority (in writing) why they fund stuff liie aromatherapy, riding therapy, music, drama and art therpay when not an iota of solid scientific evidence to support its use. Then ask (in writing) why they won't fund an approach which is groaning under weight of tip top evidence.)

Lovely activities of course but problem is that people will try and sell them to you as an education which they are not and never will be. If they just told you they were lovely activities instead of justifying them in absolute waffle about 'accessing a balanced curriculum' then all would be well. But they won't.

Everyone knows its useless but noone knows how to offer anytihng better, thus we are trapped unless individuals put heads above parapet and say

'I'm not putting up with this bullshit'.

Furthermore, what people at upper/middle tiers of management think is irrelveant. Unless you can get the person who supports your child on a day to day basis trained up and able to take nad analyse data effectively, you are screwed.

debs40 Fri 30-Oct-09 18:39:32

Can I ask some basic ABA questions then? How do you access it? Is it hugely expensive and unfunded? What is the average cost? Do you get trained to undertake the therapy yourself? For what length of time is it undertaken?

Sorry to many questions, I'm sure, just looking at an easy route to understanding

grumpyoldeeyore Fri 30-Oct-09 19:57:30

Sorry really long reply but you may as well have the benefit of my months of research on the subject! You access it through private suppliers PEACH (have website) cover most of the country but advocate you do a 40 hour programme which is not affordable for most. Depending on where you live there will be others (alot down south, far fewer up north). Try and get a recommendation as there are some ABA tutors setting themselves up as specialists with actually very little expertise. We are up north and nearest PEACH supervisor was too far away and we would have had to recruit tutors which was problematic as we live in a rural town and know from other families they have struggled to find tutors. We went with another supplier and initially intended to use their in house tutors but events conspired against us (had to appeal refusal to assess for statement so have to pay for aba longer ourselves + money issues) so now do the programme ourselves. We try and do about 20 hours a week for an almost 3 year old and he has made good progress on that but we would like to take it into nursery and really double the hours of quality input he is getting. Most providers quite rightly say parents should do some hours but not too many as you have to cope with all the non therapy time and I can see I would burn out / compromise the integrity of the programme if I had to do this long term, also it makes it hard to have a job and there are issues about generalising skills to other teachers. At the moment we pay for 5-7 hours of supervision per month @ £50 per hour + termly supervision of £200 (a US specialist comes over and oversees programme). The upfront costs were about £2500 for baseline testing and a 3 day workshop where we were trained. Had we had tutors they would have cost between £10-25 per hour depending on experience and would have to attend all the supervision sessions, but would have been trained at the same time. So basically we now run a programme at about £400 a month but we would ideally like to get LEA to fund it + up the hours a week. To have had their tutors do 12 hours would have doubled this fee (£800 pcm) and to do 30-40 hours between us and tutors doubled it again. I have not even costed out 40 hours a week but know someone on here has won that from LEA and will hopefully post. To get funding you have to apply for your child to be statemented (see IPSEA) - if this is accepted (ours was refused but they backed down when we appealed) they then assess need and may or may not issue statement. If they don't then you appeal again (potential 2nd tribunal). If do and get aba in statement then great, if offer statement but not with aba then have to appeal (3rd tribunal). If they make us go to a tribunal at every stage it would take at least 18 months to get a statement with aba. Some LEAs are more likely to compromise, but ours is anti-aba. There is a yahoo aba uk group with lots of info on different LEAs attitudes. To be successful you have to start a programme and show aba works for your child, tribunals don't want to be setting precedents saying aba is best treatment, but they will say it works for a particular child. So you have to fund it yourself to start with and prove its effective. Many people also get private pro aba ed psych reports / solicitors etc but you are looking at £10-15k per tribunal for that, we're having to fight for it ourselves. However we have already won round our nursery and speech therapist so starting even a small programme can be worthwhile. There may be ABA schools near you in which case when you apply for statement you could ask to name that school rather than a home programme. Also look at Treehouse website its an ABA school with lots of info and a forum. ABA can last as long as needed but i think often its run intensively for 2-3 years and then a transfer into school with fewer hours. They say you should get a good idea within 3 months whether your child is going to respond or not and we very much started it on the basis we would try it and see, with a view to getting a statement for a special school nursery - but its made such a huge difference we are now looking at sticking with aba and would love to take it into DS mainstream nursery. However the LEA autism teacher just said "lets not even go there" (yes I have a written record that she said it blanket policy and all that), so we have a battle ahead. You can look at some ABA on youtube. Lots of research on Research Autism uk website. We also went to a free introductory meeting (with our son) and then sat in on another child's session. Caudwell apparently fund contributions to ABA and we have applied to them for help. I have to say its been worthwhile but hard work and having proper tutors and nursery staff trained would make a huge difference, but my stress levels have actually reduced because I can see DS making progress at last, I only get stressed out now when I have to deal with the LEA! Might also be worth looking at PEAT website (Northern Ireland charity like PEACH) they have a great system where charity fund subsidised tutors and supervisors to train parents. General advice is just to video your child before you start and as you go on (most suppliers do this at assessment anyway) so you can show video evidence to tribunal. Almost certainly you will have to at least threaten a tribunal to get it on a statement. Two reports to look at are US National Research Council 2001 which recommended 25 hours a week intensive early intervention 52 weeks a year and a new report www.nationalautismcenter.org/pdf/NAC%20Standards%20Report.pdf also from US which rates various therapies and says this benchmark of 25+ hours a week still stands. Most of the UK literature says there is no evidence that ABA is any more effective than other treatments but so much literature has come out in favour of ABA over recent years since these reports that this isn't really tenable. (Look at SCAMP project Univ of Southampton). There is also a Scottish Autism toolkit which came out recently that said the same thing but I think its had to be withdrawn for being misleading about ABA - there is some stuff on yahoo group about this. It is expensive in the short term but probably reduce costs to public purse longer term in that children have better outcomes / less likely to need special schooling / residential units etc. National Audit office did report on cost of autism to economy and although didn't come out in favour of ABA said it had to be looked at on cost basis. UK approach is much like it was when they were all umming and aahing on climate change - saying basically the evidence isn't conclusive one way or the other so we've decided to do nothing sort of like a kangeroo paralysed in the headlights. I am sure one of the reasons the NICE guidelines aren't looking at interventions is because it would come out in favour of ABA and they would be stuck with paying for it. There is also helpful support in Obama's healthcare bill which says ABA should be funded by all healthcare insurance companies in US as it is a standard not experimental treatment. I just thought that was great when I read that as when my LEA treat me like a loon submitting my child to abusive "drills" (ABA had a bad reputation for using punishment in the early days) I know that at least Obama is in my corner! I would say talk to suppliers - and go with one who offers free introductory session + offers references from other parents / to sit in on sessions + a contract without a notice period (we can stop services at 24 hours notice, but some less scrupulous suppliers try and tie you in for months). There is a shortage of suppliers and tutors so a reputable outfit won't have trouble filling your spot if you want to stop.

Sorry thats loads of info. but you need to be really up on all the data to fight the LEAs on this.

moondog Fri 30-Oct-09 20:45:38

Fantastic reply Grumpy!
Re this bit
'but my stress levels have actually reduced because I can see DS making progress at last, I only get stressed out now when I have to deal with the LEA!'

Solid evidence to support this now.

However, it's not true that little UK research supports use of ABA.Lots does actually, if you know where to look (and I do, having just completed my MSc in ABA).

Interesting and gratifying that you have won round your SALT.I'm a SALT and there really is notihng comparable (although important to remembember as you say that ABA is bloody hard work-there are no magic cures. Also, some children do not respond to it but again, as you say, this should be apparent within 3 months if accurate data kept (using VB Mapp or ABBLS or similar.)

debs40 Fri 30-Oct-09 21:56:38

Grumpy - thanks so much that is brilliant!!

silverfrog Sat 31-Oct-09 10:21:47

fantastic reply form grumpyoldeeyore - not much I can add to that, except own experiences, so here goes.

we use Sean Rhodes, from here

We have been using him for 18 months or so now, with about 8 months of that being actually running a programme, the other 10 months we still had him visit and advise on what we were doing with dd1 at home, but had no tutors at that point, so it was advise on what we could incorporate into our day.

He charges a daily fee, plus travel expenses per mile. We see him every 4 weeks currently (tryign to really get on top of programme and data collection to use in Statementing)

We have a tutor, who comes daily for between 2 and 4 hours, depending on what hours dd1 is doing at pre-school. we pay her £10/hour. She is untrained in running home programme, but has had experience of ABA in a school setting, and lots of experience with disabilities in general. she is currently studying for an MA in autism/aba as well.

On the days Sean comes down, we talk about how stuff is going, and then he oversees what tutor is doing with dd1 - literally, she sets up tasks and games as normal, and Sean looks on, corrects, re-trains etc as needed.

I don't do any sessions with dd1 as such - my view is I am her parent not her tutor, and I want to be able to enjoy her as I enjoy dd2. We do, of course, use aba techniques in daily life (in many ways it is like having reward charts and systems for everyhting), and so in some way I am using aba with dd1, but only in the same way as I am "teaching" dd2 - through general life skills and experiences. this is what works for us, and each family is different.

I am there on consultant days, though, and my input is as much valued as everyone else's - after all, there is as much value in knowing dd1 can do the skills she has mastered outside of formal sessions too. no point in dd1 knowing how to do something only with her tutor - she needs to be able to do it in all situations.

there are a number of different providers - as Grumpy said, some are more helpful less unscrupulous than others.

a few months back there were a couple of quite long threads on starting an ABA programme - they contained a lot of info on who was using which provider. do ask people - start a thread for a specific person if you think they can answer a query about any particular provider. I found when I was startign up people were only too happy to share experiences of providers and ABA in general.

grumpy - about wanting to take ABA into your ds's pre-school - have you asked the pre-school? we got dd1's pre-school to come and sit in on consultant days, to observe what we were doing at home with dd1. it was not sanctioned by the LEA at all, but we just side-stepped them. dd1's keyworker was very keen to learn anything at all to help (she was the head of the pre-school too, which helped us!) and so rearranged stuff to be able to attend. what the lea doesn't know can't hurt them, imo.

grumpyoldeeyore Sun 01-Nov-09 19:53:46

Moondog, I agree there is lots of research its just any "official" reports seem to down play aba as no more effective than other treatments when this is now clearly untrue.

Silverfrog - yes we're sneaking it into pre school shortly. The staff were sceptical, but have been so pleased with the changes they have seen in DS that they have really come round. The LEA Outreach team will be against it - another local family were told they would pull out LEA Outreach team if they did ABA - I'd be hard pressed to notice their absence in DS's case. However DS is not 3 yet and won't get any LEA funding for his nursery place until Jan 2010. Until then his nursery attendance is "a private business arrangement between us and nursery" (these were the words the LEA officer said to me when I asked why they did not plan to make any provision until DS was 3), so as far as I see its none of their business (its a private day nursery). I'm hoping if we get into nursery before the LEA input gets going it will help our case, or at least muddy the waters. Its the only way I can see DS coping at mainstream for the foreseeable future as he would just be sat in a corner stimming without aba.

moondog Sun 01-Nov-09 22:15:13

Yes Grumpy, but if and when parents cite the research that proves it is effective according to protocol, then they have no choice but to accept its veracity.

Otherwise they are in bizarre position of denying something that it a fact, rather like nutters of yore arguing that earth was flat.

Either way, they come out looking rather stupid and incredibly unprofessional.

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