Attitudes towards professionals

[Lougle]

I'm an 'old' face on this board. I used to be quite prolific in posting, then I took a step back...now I lurk.

I have always read the board, contributed and encouraged parents to be proactive and assertive with professionals.

Now, however, I have been increasingly disturbed by the wave of militancy I have seen here. It has disturbed me so much, that on the many occasions I have started to post, I have realised I have nothing to say that will be received.

What has happened to us? As a community, we used to be a body of people who would give new parents, desparate for advice and direction, clear, objective advice. Advice that encouraged them to ask questions, push forward their path to answers.

Now, I see new parents being given what I view to be propoganda. No longer advice alone, but a politicicised viewpoint of Us vs. Them. The Them being health and education professionals.

Thread after thread with the sentiment that cost is the only motivator for professionals. That all our children are being sold short. That nobody cares for their child. That TEACCH is rubbish. That only ABA will do. That you need to FIGHT and you need to attack.

It isn't so.

I am shocked and saddened. I am displaced. I am no longer sure of where I belong.

We spend our time moaning that professionals don't want to work with us. If attitudes are as they are expressed on this board right now, what is there to work with???

Perhaps I have changed, Star. Perhaps I have seen enough from different angles to know that the fight isn't one against the system, but to steer the system.

Perhaps I see these professionals who are being denigrated here, working tirelessly, not getting the breaks they should, because they are taking a phonecall, driving to the next school, etc.

Perhaps, also, we disagree on what is 'adequate' and what is 'appropriate'.

starlight I know you were exaggerating. But I think what you said did illustrate very well the underlying attitude -- 'it's all about my child'. I'm also a parent governor, in fact the SEN governor at my children's school. I've attended as an observer the meeting when the SEN provision for the whole school was planned, so I know the problems the school is dealing with and what kind of pressure they are under. It's not that I am not concerned about my child, his development and his future. Of course I am. But I cannot see him in isolation, and I cannot unknow that there are many, many other children who have high levels of need.

There is not enough for everyone to have everything. Professionals have to assess how much each one can have from a shrinking cake. I simply do not agree that it will benefit others to fight to get everything, cake, icing and all for our own children.

I think that the idea that articulate middle class parents lead the way and reform the system for everyone else is a myth that helps those with sharp elbows get the lions share and feel ok about it.

I feel that I have to get involved, and this of course makes me a party to all the compromises that schools, NHS and so on have to make. But there's no other way if we are really to shape the future not just for our own children but for all children with SN.

I

you are right, niminy, that a shrinking pot cannot always cover all costs for everyone.

but it is interesting (to me, anyway ) that:

my dd1's lovely, exclusive, private SN school, seen by the LA as gold standard etc, costs only a tiny bit more than it would have cost to have ehr go to the (for her) ineffective state SN schoo, and hav OT, SALT, SI costs on top of that. and regular TAC meetings, and similar.

and another ABA school I know regularly takes the most severe, challenging children - a sort of "last step" for the LA beofre residential school. none of those children ever go on to residential school, because the ABA school meets their needs - and is clearly far more cost effective. yet a lot of LAs do not cinsider this optioon, and woudl rather keep ABA at arm's length - cannot ever, ever, admit it might be the right course of action for some childrne, because all the parents would ask for it - but what if they did?

as I know, form our case, it would not cost the LA any more if they did.

so, what I have achieved for dd1, and have been told several times means that there are other families missing out etc - it costs the same as what is spent "standardly" on a severely autistic child. and much less than is spent on many. yet is probably the most effective.

that is why I tuen out when I hear the LA saying that to me - if they were acutally using their budgets wisely and efficiently, rather than following blanket policy, those budgets woudl be helping a LOT more children

Lenin- what have school said about that?

that is alarming (how "good" were his fine motor skills to start with? where has he regressed form, so to speak). is there any extra inut the school could give to this?

I come on here specifically to get people, particularly those with newly diagnosed autistic children, to try ABA or at least ABA principles - not for any personal gain or kudos, but because I firmly believe it is the best chance a 2/3 year old autistic kid has of being mainstreamable by 5, or at least of making serious progress in the important brain development years (which occur before 5, or 3 according to some neurologists). I am not brainwashed by ABA: I tried every other intervention going, including paying for a TEACCH school for 2 years, paying for SALT, paying for PECs, paying for diet stuff, supplements etc. None of it even made a dent in my son's autism. ABA did. I wish some mum had told me to try ABA when my boy was 2, that's what drives me. I also think ABA can help older kids, and non-autistic kids with LD (and I've seen it happen).

I do not want to just benefit from ABA myself and then run, I want to spread the word to others. You can call that propaganda or you can call that philanthropy, I don't care much as long as it helps another kid.

As Silverfrog says, it would not be expensive to introduce some broad brush behavioural principles into our existing shiny, expensive state autism infrastructure. But the prejudice against ABA is stopping some common sense changes to our state autism schools, and that feels wrong to me.

And for what it's worth, I've never been a "fight the LA " type - I have never gone to tribunal, or even had harsh words with the LA. I've done it all through firmness and charm (but I do think I've been lucky with my LA!).

And tbh I've been on the board for years too and am far less interested in "how things used to be " than in helping other mums with autistic kids get their kids talking etc. It's not just my experience with ABA, I also have nearly 100 pals who've used it to good effect also. One or two have kids who are now having their autism diagnosis taken away. And I know that sounds like I've made it up, but I actually haven't.

And yes, after years of having to fight every single person I come across to say that ABA isn't some horrid thing, it feels quite nice that for once the board is coming round to ABA a bit.

hmm, I'm not sure that more time is the only answrr - and glad yo u have support in resisting this.

we have gone very slowly with dd2 and integration (she is a year younger, so heading for reception next Sept), but still her pre-school ahve managed to keep on top of her (non existent ) writing skills, and reading etc.

(I know it is hard but) could your DP do anythig with him at home? to help keep the motor skills tuned - eg dot to dot pictures, writing in sand (strengthens the fingers nicely!) etc? to encourage pencil grip, but not in an academic way?

I am a very active local campaigner on children's issues and very involved in school life and supportive of whatever help my son receives. However, my experience does not mirror yours Lougle and it is good to hear that things are going very well for some people.

I think the cost/resources issue is actually key to what alot of people are saying.

Parents are not saying 'I want the bestest, most expensive support for my special child' they are saying 'I want support that actually does what it's supposed to' i.e. help my child make progress. This might not actually be the most expensive help on offer, it might just take a bit of collaborative working, working with the child, planning and time.

In fact, it is a constant source of frustration to many that much of the provision thrown at children is generic and unthinking and therefore a waste of money. Whereas, with a little time, thought, knowledge of the child, help can be better targetted, less money can be wasted and more progress may be made. My experience is that an awful lot of professionals get involved only when forced and don't have the experience or time to set up proper programmes in m/stream settings or monitor them. Things maybe different in special schools.

Now, it maybe that some will be successful in persuading people to change their ways by encouragement, constructive discussion and sharing thoughts and advice between parent, setting and professionals. That is the way it should work. If that's the way it works for your child, I am really pleased for you.

But people have different experiences and we shouldn't judge them if they have to go 'into battle' because sometimes using the law or complaints processes is the only way to achieve changes where all else fails. Unfortunately, in the world of SEN this happens only too often.

So, yes, professionals are overworked and underresourced, some care very deeply and are frustrated they can't help more, some schools are great and sometimes lucky children get everyone working as a team for them.

But some are not and some children would be left without any assistance at all if it were not for their parents actions.

I don't accept any argument that enormous publicly funded institutions, LAs, the NHS are somehow the victims in this process

Quite, Silverfrog...but does it need to be so...strong?

I mean, we have the Plain English Campaign. They have acted to try and make things easier for people to understand. They could have been acting to 'stop corporations and government hiding behind fancy words'. But, instead, they have used positive phrasing, to 'ensure that publications are easy to understand'. Subtle difference, perhaps, but it is there.

"ponting out to people when they ahve lied, misrepresented, or acted illegally." Can you see that already, you are putting the professionals in an opposing position? Keep records, for sure. Challenge when things have gone wrong, certainly. I did this for DD1's SALT. I compiled a report of all the discrepancies, the inaccuracies, etc., and asked for a meeting with the head of SALT and the therapist to discuss it. But I never stated that the therapist had lied, or misrepresented. Instead, I let my 'confusion' highlight the inaccuracies and failings of her assessments.

The SEN:CoP is there for all to see, and for all to refer to. It would be a very foolish parent who didn't use it.

But we already have organisations like ACE and SEN:SOS, IPSEA who give advice to parents (if you can get through). The campaign or 'action group' you were discussing was more of a political one, it seemed. And when I pointed out my views, I got two or three voices of agreement, then a return to 'but we must stay angry'.

LOL Lougle - I ahve never once accused a professional of lying (although many have).

I have (nicel but firmly) poitned out when they have made illegal statements to me.

I have probably once or twice said I have thought they are being disingenuous.

but the fact remains that they have lied, misrepresented and acted illegally. (I was told, face to face, so no misunderstanding, that dd1 got no SALT as the one we had been asigned specialised in "over 3s" - dd1 was 2.8. no problem, we though, by the time she gets to the top of the waiting list, she'll be 3 anyway, starting pre-school - will all tie in nicely. dd1 turned 3, and we waited. and waited. and then, in a chance meeting (it had to be a chance meeitng, as the SALT was avoiding our calls) she told us she could no longer have dd1 on er caseload, as she specialised in "under 3s" - now, if that was not a blatant lie to get us off her back, then the first one was.

did I scream and shout? accuse her of lying? no, I merely pointed out that she had changed her specialism very quickly (a mere 6 months), and finished off by saying that if she had not wanted ot help dd1 (which seemed ot be the case - we had several actual meetings with her, over that year - so it wa snot a lack of time!) she shoudl have handed the case over to someone who did want ot help, and not waste 4/5 hours of valuable time in justifying why a child could not be helped.

But if no-one shouts, Lougle, the status quo will never change. Inertia is a powerful force.

What worries me is the blind prejudice. Why, when I showed my son's TEACCH school some ABA techniques that were really working, did they not at least try them, or suggest them up their management line? Because all state employees have been brainwashed to say "ABA - bad". It's become their mantra.

But when I showed them that the techniques had helped my son say his first word, or stop battering me, isn't that wrong that they won't listen?

And when ABA is also the treatement of first choice in the US, shouldn't we pay a bit of attention? Or are we so parochial that we think the UK knows it all?

If your kid had a medical condition which had been proven to respond to a particular treatment, but the NHS refused to even read up on that treatment, wouldn't that make you angry?

I am glad that your child can thrive under TEACCH - I have a hf autistic DSD as well as a more severely autistic DS. My hf DSD would have thrived under almost any system, as she has a normal IQ and speech. Not so for my boy.

"In fact, it is a constant source of frustration to many that much of the provision thrown at children is generic and unthinking and therefore a waste of money. Whereas, with a little time, thought, knowledge of the child, help can be better targetted, less money can be wasted and more progress may be made. My experience is that an awful lot of professionals get involved only when forced and don't have the experience or time to set up proper programmes in m/stream settings or monitor them. Things maybe different in special schools."

I think this really sums it up perfectly though sadly it is not different in ds' special school - his school placing is extremely expensive for the LEA yet in day to day terms, there is very little happening apart from looking at TEAECS symbols (I've decided just to merge them together in a jumbled way) half heartedly and baking empire biscuits. Though I fully accept that not all SN schools are like that.

And let's face it Brian Lamb didn't make it up. What happened to his recommendations? Who is going to keep them on the agenda?

Lougle, parents don't want the best chance. They really don't. They learn to lower those expectations quick smart. What they want is a chance at all.

They don't want money and they don't want provision. They want what the law entitles their children to, and they want local authorites to adhere to said law. If that doesn't happen they have to look around at their options.

Do they sympathise with the LAs and schools about the fact they have no budget to implement the law and have their child suffer? And if they do this won't further cuts continue to just be made as there is no-one to answer to?

Just what DO you do when two LA bods sit in a multi-disciplinary meeting and tell you and the school that they don't specify 1:1 in statements any more, that isn't at least a little bit challenging?

Well the Lamb report is going the way of all flesh, isn't it? As far as I know, the Green Paper trumps that because it will dismantle the system and replace it with something quite different.

As always, under the new regime it will be those children without articulate and informed parents who will really be unprovided for. I read the IPSEA response to the Green Paper yesterday, and interestingly they said the same.

'As always, under the new regime it will be those children without articulate and informed parents who will really be unprovided for'

So what can we do as parents of SN children to help this group.

And what can we do about the inaccurate underlying implication in that sentence that those children WITH articulate and informed parents WILL be provided for?

There are no guarantees, of course, Starlight, she says sadly. But surely you know as well as I do that those with the loudest voices and the sharpest elbows get more of what they demand than those who don't.

One thing I really do respect about many of the professionals I've worked with is that they go the extra mile for kids with parents who don't speak English, or who themselves have SN or SEN, and for kids with parents who aren't interested in their education.

I'm afraid that pushing for more parent power will not help these children, because their parents can't use or don't want to use their power.

I agree in part Niminy, that those who are articulate and/or rich tend to get the best out of the system at the moment. But by discussing all these issues on sites like Mumsnet, information and tactics are all made very "democratically" available. I also used to great effect an SN mum who has retrained as an SN advocate - and is therefore cheaper than a solicitor, but just as good (she's called Fiona Slomovic).

And also, it's because some mums just can't fight the system (maybe due to English as a second lanugage) that I want to campaign to improve our state autism education system. People who want ABA shouldn't have to a) go to court b) fight the LA or c) be rich enough to pay for it themselves. If it works, it should be in our schools.

'The SEN:CoP is there for all to see, and for all to refer to. It would be a very foolish parent who didn't use it'

Some people don't know it exists, let alone how to use it or interpret it.

Willow, this is so true
'I think this really sums it up perfectly though sadly it is not different in ds' special school - his school placing is extremely expensive for the LEA yet in day to day terms, there is very little happening apart from looking at TEAECS symbols (I've decided just to merge them together in a jumbled way) half heartedly and baking empire biscuits. Though I fully accept that not all SN schools are like that.'

What is in place costs a tonne and most of it is useless. Put in an F o I requst to your LEA to ask how much a place at a special school costs and reel at the amount.

The issue if one wants to be clever is not so much forcing a reluctant LEA to consider the unusual package of care one wants for one's child (ie one that works) but to get them, with tact and diplomacy, to look at what they offer as default option and point out the flaws.

It all takes time and effort of course.

As a parent and a professional, all I can say is that seeking appropriate provision for my child was one of the most terrifying, difficult, draining and poisonous experiences of my life. It brutalised my spirit and changed me for ever. All is now rosy and my LEA are terrific but if it is like this for me, part of 'the system', educated, articulate, know the drill inside out, what hope in hell is there for others?

The people wh will change things are parents, demanding greater accountability and value for money. Cuts don't bother me. There are enoguh professionals to do the job, and a damned good one too if those running the show give consideration to what really matters.

Power to the people.

"But surely you know as well as I do that those with the loudest voices and the sharpest elbows get more of what they demand than those who don't".

I think the problem can be rearticulated this way - if you don't shout you are unlikely to get much at all. If you do shout, you might get what your child is entitled to.

It isn't parents who put the 'shouting' or 'fighting' into the system. I would much rather work harmoniously but that hasn't been open to me as an option.