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???

Lougle I'm pretty new to the SN board and have to say that no one I've encountered has been militant - but then, dd has CP and my focus has been quite narrow.
I've met some nice (even good) professionals and I don't doubt that they care about dd. However, I've been disheartened by their reactive rather than proactive approach. The advice and direction, the clear, objective advice you mention.....I'd like to see that from the professionals too! They've dismissed one of the options we'd like to explore for dd and are not even interested in seriously discussing it.

"Also remember that just because research isn't there to show that something works, that is not the same thing as being able to say it doesn't work."

The real problem with the "What Works" approach is that if there is no full explaination and understanding of why something may work then there is laos no understanding for which groups of children and or adults it may work for and the groups of children and adults it may not work for.
And some claimes made by some professionals using this form of recommedation have not kept up with present day neurological research, and fail to understand the wide range of different needs children may have.

professionals in education need to demonstrate that they have keped up to date with both educational and medicla research with regard to the performace of their job and be required to have a licence to practice teaching, etc, and the license to be reviewed ever 3 or 4 years by the professionals each demonstrating that they have kept up to date with international research related to their specific job.

I don't post much as my ds is not in mainstream school,so a lot of my issues are different- he also has complex difficulties,not only ASC-I agree with BAKELITE that the board is very 'ASC heavy'...but hey,if we posted more then I'm sure there are others out there!

LOUGLE- I have read a lot of your posts in the past and know that you have a great deal of knowledge and were keen to share that (I will be looking up your old threads when it's time to renew DLA)

My own experiences are that certain professionals have been caring-others caring and effective- The problems I have had are from LA (too much to go into)- I will not rest until I get the best provision for my Ds (I'm sure they think I'm a pain in the backside)and to do that I have had to chase and phone and pester..(politely),but I don't think it's because the professionals don't care-funding is being cut all over the place -some only work part time-

We are getting there- his amended statement is nearly there(thanks in part to advice I've read on here)...and as long as things actually are put into effect we are in a much better place-this wouldn't have happened if I was a more passive person.

'I do hope you don't include me in that bracket. No amount of provision is going to take away the pain of seeing my little girl struggle to cope with her life'

I don't know Lougle. I do know you have had a tough time and I am not suggesting that everything is lovely just because you have found a school that works. But to not have that everyday miserable battle because the school just does not 'get' your child and has been ruled by the LA to refuse to take on board any parental suggestsion is something you appear to now be spared.

FWIW after a truly horrendous start (set up by the LA) the Nursery staff and I have a very good relationship and have started to come to me to help them resolve issues. The fact that my and their (written in advance) ideas for next IEP targets are almost identicial is something that most parents would kill for but it is happening for us. They don't think I'm nuts now as they first thought but they do know that they can't coast and they have adapted their practise to reduce criticism, and this isn't just for my ds, they have done it for all their children with SN.

The SALT has also reconsidered her opinion of me and even stuck up for me in meetings with the LA. If I had have been too keen not to rock the boat with the LA, we wouldn't have been able to tap into the willingness of the SALT to be challenged and try new things that have had excellent results with ds.

Would this have happened anyway? Well no. It couldn't have. DS wouldn't have even had a statement, let alone the resources to achieve the above. Before he had his statement he was told that he had everything that was available.

Fight the professionals, apply for a statement, don't believe anyone, are not things you should do 'anyway' without consideration, and I hope that this is always clear in what I post. I do try to be careful about this. Apart from anything else it is hard to push forward without any system allies at all.

intothewest It's great that you want to get the best. Many of us are simply trying to get adequate and what our children are entitled to. And some of us, after years of fighting are STILL trying to do this.

Lougle, you've put into words something I've felt for quite a while, and articulated exactly why I took quite a long break from the board. I've been trying to come back and post where I think it might be helpful to others, but I feel pretty disheartened.

I know lots of people have really difficult experiences trying to get their children's needs met. But I do really hate this professional-bashing, and the levels of aggression towards them that are sometimes vented here.

My experience has been that all the professionals I've encountered have been genuinely committed to the children they work with and trying to do their best by them. When a parent is fighting for their own child all they are responsible for is that child's needs. But people working in health, education and social services have to be looking after a huge number of children. Our children come first for us, and for us have priority, but mostly we have no idea of what else they are dealing with.

This was brought home to me very graphically when I found out that the Senco at my son's school had missed a meeting to discuss his progress not because she is incompetent or doesn't care but because she had been dealing with a family of children who had arrived at school that day having fled their home because their mother had been raped at knifepoint by their father in front of them.

No one has their child's every need met, not even the most 'normal' child. Everyone is a bit misunderstood, sometimes bored, sometimes not making the progress they might, sometimes unhappy. I guess I feel that there are times when it is good for us as parents to remember that, and to try and be aware that we don't know what else the professionals we encounter are dealing with.

I'm sure there will be posts saying something like 'well niminypiminy' it's obviously ok for you but the rest of us still have to fight'. I'm not saying it is all ok for me, simply that I don't think it is right to walk the path of constant hostility. And I am also saying, I think, that when you try to post in good faith what your experiences and views are, and you feel that you are shouted down, then you don't want to join the conversation anymore.

I think reading over some of the threads, it probably does seem that some of us are over zealous in our criticism of professionals but in real life, I am a fluffy toothless kitty who finds it hard to challenge professionals and so the MN board allows a Jekyll/Hyde transformation into someone who is able (potentially) to take them on. In real life, I do try to play careful chess to get end results and try to work round difficult situations with tact and diplomacy but sometimes it is nice to just get it all straight in your mind by discussing the issues with others who feel the same way. I have met many excellent professionals and so maybe we could have a 'Professional of the Week' award thread for them to balance things out ? I also agree with dolfrog that 'what works' is a complex area for children with SN so encouraging diversity of approaches with education must be a good thing.

My son is starting his 3rd school, already with a permanent exclusion on his record. He got the exclusion because he was deliberatley driven out of his last school. The bruises a HT left on him were ignored.

He is currently failing in school 3 after my long battle to get his first statement - I'm currently prepping a tribunal application as it does not address his key "disability" noise sensitivity. Posters on here will know I did everything I could to try and avoid the stress etc of tribunal but am now left with no choice.

His 21 year old Ta at his new school only has 10 months experience of working with ANY kids, lovely boy but not exactly knowledgeable in how to cope with a kid like my lad with (roll drums for professionals favourite catch phrase") complex needs. My son isn't able to cope with his new school for more than 3 hours a day. Sadly this is exactly as I predicted when the LA was finalising the statement, as the new school predicted too.

There is no light on my horizon at present as my mortgage falls further and further into arrears due to my inability to work, my son's self esteem falls further daily and the NHS PCT professionals continue to make excuses for not implementing the therapy he needs. It took 3 years to get him an initial assessment diagnosis and he's still not fully diagnosed.

So 3 primary school failures, 2 years lost earnings, (and possibly later this year our home), a child with zero self esteem and a history of self-harm. My only child is 6 years old - at the moment he's a future teen suicide statistic waiting to happen. Oh and don't forget the blame game of being accused of being a poor parent, (single Mum - ya know she must be!) at every turn.

The worst of it all - his basic disabilities are NOT that severe, his Mum just bought a flat in the wrong postcode before he was born.

At every attempt I try and work collaboratively with all professionals involved - it's not my nature to be confrontational. At some point though you do have to admit the proverbial is being taken and that excuses are not a concrete therapy. I really don't want it to be a fight, but the sad reality is that for some of us, we have no choice. We can do that with velvet gloves and nice words but fight we have to - or it's our kids that pay a very, very high price. My child deserves nothing less than a Mum who tries everything from diplomacy to tribunals in order for him to be able to access a basic education like his peers.

'I started a thread because I didn't WANT to jump onto a bandwagon and derail another thread. It isn't polite. I started a thread because I think this subject has merit of its own'.

I don't think that challenging another poster on a thread about - for instance - ABA is to 'derail' it. It is to offer a different opinion at the appropriate time. Starting a whole thread about the fact that you feel that posters are 'militant' and dealing in 'propaganda', is less 'polite', I feel.

Someone started a thread recently encouraging people to express opinons on ABA - good and bad. That would have been a great time to gently challenge what you feel is an inappropriate militancy on here.

I personally feel that parents don't necessarily start out as militant people, but they get so crapped on by the system that they have to find a voice and sometimes, that voice has to shout very loud.

'I don't think it is right to walk the path of constant hostility'

I don't believe anyone walks that path. I don't believe anyone genuinely prefers hostility to the alternative. I don't think anyone finds it anything but hard to believe that the professionals that are working with their children don't care, but as you say, these professionals have their agendas and some of them conflict with the needs of the children they are supporting.

Where this happens it needs to be challenged, particularly if the purpose of the role of the professional is supposed to be to meet the needs of the children.

If a SENCO on ocassion doesn't have the resource to meet the needs of two children so prioritises one over the other it is fair enough to be understanding. If this understanding leads to your child being prioritised over again, possibly fair enough. If, looking at the SENCO's appointment diary her superiors decided that what she is delivering (not what she should have been but couldn't) can be done in half the time and changes her post to part time is that still fair enough?

If on the other hand, the second time the SENCO let your child down you wrote a strongly worded letter and demanded a meeting on a Saturday you might have protected that SENCO's job, your child's provision and that of the rest of the SN children in the school.

This is just a hypothetical story, of course.

A real one, round our way is that the SALTs are all given templates from the LA for their statement recommendations which makes provision wooly. It is very cleverly worded so that the majority of SALTs don't register that the child won't actually get the provision. Now 2 of the SALT bases in our area are being closed and the SALTS are being made redundent because as the LA can show, there is no legal requirement for the LA to provide what it is the SALTs believed they were recommending.

Had parents been more forthright in their insistence on specifity, the units would not be able to be closed. It really doesn't matter that the SALT and parents had a great relationship that would have been knocked had the parents directly challenged the SALTs recommendations.

sorry to further burst your bubble, lenin - I have 2 complex children

it is a phrase that makes me inwardly sigh when used in reports about dd1 - it seems ot have been used, over theyears, to try to mollify me somewhat - ie, to point out to me that the professionl has noticed that dd1 is actually human, and has many facets to her personality (why on earth this is supposed ot impress me, i don't know - does anyone expect other people to be "simple"? )

"Many of us are simply trying to get adequate and what our children are entitled to."

Star, I think you have acknowledged that you receive a 'gold-plated service' compared with many families. I don't think you are striving for adequate, tbh. You are striving for what you believe to be your DS's best chance for his future. I don't blame you. We all want our children to reach their potential, whatever that may be. But, we do have to remember that NO child in this country is 'entitled' to the best. Many, many parents strive to appeal mainstream school allocations, and any attempt to suggest that the school they are appealing for is 'better' than the one allocated is dismissed, because all a LA has to do is provide a 'suitable' education, not the 'best' education.

I think there is no harm in trying to get as much provision for your child as possible. I did. I told the LA that DD1 would need 1:1 from the minute she stepped on school grounds to the minute she stepped off them - and she would have done.

But what I see here, is almost a parallel to what LA's are accused of. They are accused (in many cases justifiably) of having 'blanket rules'. That a child with x diagnosis needs y provision. Clearly that isn't so. But I see on here, especially of late, a trend towards 'blanket' advice. So 'fight for ABA', 'don't let them fob you off with 15 hours 1:1' - what if a child only NEEDS 15 hours? Why is it only good enough if they have 32.5 hours?

I can see that I am seen as being 'sorted'. I'm not. I now have almost the opposite worries than I did in MS pre-school. There, DD1 was the 'SN kid'. Now, she is in Special School, but I feel I have to remind them of her needs sometimes, because she is more able than many of the children in her school, so she is seen as comparatively 'bright'. The staff there have other children with MLD-PMLD to compare her to, not NT children.

I do feel that I am swimming against a tide. It is sad...I used to feel this was a 'home'. Now I am as isolated here as I am in the NT community.

LOL, I had 'your child has moderate to severe autism, but in some areas he is high funcitioning'.

Yay. Not the same as 'complex' but HF certainly offered as a sop.

Lougle, it is gold-plated compared to many other families, but it isn't adequte.

When I get adequate, I'll stop knowing that I can do the icing and cream. At the moment I am struggling to compensate for lack of filling.

"If on the other hand, the second time the SENCO let your child down you wrote a strongly worded letter and demanded a meeting on a Saturday you might have protected that SENCO's job, your child's provision and that of the rest of the SN children in the school."

I think if I wrote demanding a meeting on Saturday with the Senco I would earn the hostility of both the head and the Senco. For goodness sake, most teachers are at school at 8 and leave at 6, and work again in the evening when they get home. We have to see sometimes that our child's needs are not the only thing in the world.

I don't think professionals have 'agendas'. I think they are massively stretched, and for the most part trying to do their best in a really difficult financial and institutional situation. It's not all about us.

oh, that reminds me of what I wanted ot say in reply to Star's post:

I think alot of our problem was that the LA sees ABA as "gold standard", not bog-standard. in my dd1's case, ABA is actually the only way she has ever learned anything. I was "doing" ABa before I even knew it had a name - instinctively, this was the way I taught her anything at all.

so, for her, her wonderful, highly specialised, totally dd1'centred school, which I am sure the LA look at and think "well, all very nice, but I am sure most parents want an idyllic country school, with fantastic parent links and parental involvement, and a curriculum written for each child" . When they should actually not be looking at the lovely facilities (hah! the irony of that statement, when all we were ever told about any school the LA wanted dd1 to go to was about the facilities), but at the fact that dd1 is actually learning now. something that no other school she has attended (and there have been too many, in her short life) has ever managed. because the only way she learns is through ABA. so, in her case, ABA is the "adequate", not the gold standard.

in response ot your post, Lougle, I owuld say - you see it as "blanket" advice to say fight for ABA. in one respect it is, but in another it is not: ABA is never blanket provision. it can't be. it is totally centred on what each individual needs (which is why it is suitable for al children, in a way that other appraoches are not suitable for all children). dd1 has completely different needs form the other chilren at her school - yet each child's needs are met, and met fully.

the advice about "don't be satisfied with 15 ours" I see more as a warning that it is another hurdle to ne got past (if needs be) - like when SN is first raised at a school, and you are told you "have" to go through SA, and SA+ before you can begin statementing - a barrier put there by the LA "oh, we never give more than 15 hours" - it is uncovering the lie, not saying everyone must have 32 hours.

lol at complex - ds is both complex & atypical [eye roll] ... could it be true that he isn't an autism cardboard cutout [massive eye roll]

'I think there is no harm in trying to get as much provision for your child as possible.'

I'm afraid I disagree. DS has loads of provision, most of it grossly inappropriate and some of it detrimental to his progress. It wasn't what I asked for, but I had an excellent case for something that would be adequate that they didn't want to provide, so they threw everything but what I wanted at ds, regardless of whether it would be any good. This outrages me for the wastage that it is and the provision that has been taken away from others as a result.

'But I see on here, especially of late, a trend towards 'blanket' advice. So 'fight for ABA', 'don't let them fob you off with 15 hours 1:1' - what if a child only NEEDS 15 hours? Why is it only good enough if they have 32.5 hours?'

Lougle Honestly, I haven't seen this. I had a bit of a break but I have never come across this. I am currently trying to get 20 hours of 1:1 for ds in reception, despite the fact that he had full-time in nursery. This is on the recommendation of an independent EP who I chose for his balanced views on ABA and alternatives.

'I do feel that I am swimming against a tide. It is sad...I used to feel this was a 'home'. Now I am as isolated here as I am in the NT community'

I'm truly sorry if either you feel like this, or if it is in fact true, but I don't see what you see. Perhaps the MN board hasn't changed but you have?

I have seen some posts against TEACHH, which I know is used in your DD's school. For the record I am not against TEACHH and many other pro-ABAers aren't either (although some are) it is more that it is often watered down and wooly version that is actually delivered and because it can't be measured in the same way that other approaches can, it is hard to know if your child is making the progress that they can make. This is fine if you and the professionals have expectations that are in line, and you have not caught out some of them lying to you.

oh yes, gracious - "atypical". I ahve had that said re: dd1 too many times, too... what tickles me is that it is usually used in reference to things that are not "typical" ASD things - ie not the Triad of impairments, but co-morbids.

in which case, why on earth woudl anyone ever think they were "typical"?!

I was exaggerating to illustrate niminy

Bakelite - my issue is not with ABA itself. This isn't an ABA thread. This is a thread about the cumulative move to a political and aggressive (in MY view) agenda.

Look at the thread about 'parents for accountability'. I am all for action. Why do you think I am chair of a Children's Centre Partnership Board, a Pre-school Committee and a Governor at the School DD1 attends? (Really outing myself there, but hey ho). Partly because it stimulates my brain, as I can't work right now. Partly, because I am interested in the welfare of children. Mainly because it gives me a knowledge, and an ability to help to shape views of those who have influence over the future of services for children with disabilities.

There are ways to fight without being combatant. There are ways to gain ground without sending the message that all professionals are imcompetent, careless, and ignorant.

We are not only fighting for our children. We are shaping the attitudes of professionals who work with us. Has it occured to any of you that by having these sorts of attitudes and encouraging other people to hold them before they have even experienced what their teams have to offer, we could be making things even harder for future parents?

Ever heard of the phrase 'give an inch, they take a mile'?

Lougle You are just as welcome as any to join the brainstorming session about what we want to do/be? The purpose of that is to find the easiest path for change, not to be combatant for the sake of it.

surely the parents for accountability thread is about getting LA's to actually deliver what they say they will, first of all.

about drawing aline and saying "actually, I am no longer an isolated parent goign through this - I have people who are standing with me, who agree that you should "measure up""

about making sure that LAs know that we, the parents know that when they say "oh, we don't give statements anymore" it is a lie. and that we won't accept that.

no one is suggestign that any of that is done with hostility.

but I do not htink thee is any harm whatsoever in keeping records, nd ponting out to people when they ahve lied, misrepresented, or acted illegally.