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 do "get" what your saying & sometimes I do feel that alot of what is said is negative.

I feel lucky to receive good care for my son by professionals who have his interests at heart. I think I am also realistic about what he needs & what I can expect from the NHS/lea.
But I certainly don't feel that we have been shortchanged. and beyond a little extra SALT i don't think he is lacking in anything.

I am still unsure (& its difficult to guage without knowing people in rl) if people have bad experinces because they don't build good relationships with professionals or, due to the postcode lottery people genuinely are unable to access good support.

The other thing (that ds's teacher reminded me last year) is that although we become totally immersed in our child & their SN (& MN SN can fuel that) at school they are just another member of the class & the entire world does not revolve around our children.

There is only one smug person around here and that is me

[hides behind sofa, this is no time for jokes]

There was a time that i was reading MN SN & thinking should i be insisting on more 1 to1 time, should I be looking at ABA etc.

But Lougle is right it isn't the amount of hours that matter or the teaching method its quality staff who know your child in an environment that allows them to be as independant as possible.

My ds2 does have a full statement he hasn't made progress academically BUT he has made huge leaps in confidence, communication & self awareness to me this means his TA is doing her job & he has the right balance of support in the right environment.

Well anyway I have only been on here for about a year. I am very suspicious by nature and naturally have a fear of authority. I question everything. One of the most important things I could get from this board is more experienced people setting me back on the right path and stopping me from making overly emotional decisions.

But that really depends upon the 'elders' and 'wisers' posting!

I think the problem is that for many people the SEN process changes you.

You start off believing people have your child's interests at heart and then you wonder why they are not following expert's recommendations in school or why they S&LT is identifying need and then discharging your child.

Then you realise, in many cases, that the only way you will get decent provision is if you 'fight' for it and lead the way.

And it does feel like a fight and one with an irrational, often desperate 'foe'. Often parents have to put up with half-truths, broken promises and the opinions of 'experts' who have never even met their child.

Then, if you are lucky, you might end up with a statement with no guarantee of the quality of provision your child will get under it.

I think the point is though that for some, it is not like this. They may have good experiences with schools, with experts, with their LA. They may be lucky enough to experience support from professionals who know what they are doing and their child might make progress because of this.

Perhaps we should remember this when posting but it is my experience that this is not the experience of many parents and this is amply borne out by the substantial evidence which has gone into select committees, the Lamb report and the SEN Green Paper review.

Sadly, I think times are changing and things are getting more and more difficult with resources being cut even as we type. Parents are generally speaking likely to find things an uphill battle.

I wish it were not so. I wish I can say I had not had to turn my world upside down over the last two years to get my son a modicum of help but I can't.

WE can only call it as we see it.

Leningrad, that is a good point. While we may let off steam in this safe space, most of us try to keep relationships positive where we can, try to work diplomatically and constructively, give praise freely where it is earned, and encourage and support those working with our children.

This doesn't mean that here, where we feel we can freely exchange views, we don't feel bloody p**d off that we should have to dedicate so much of our time and family lives to achieving sometimes very basic goals.

I might be angry here but to the outside world I put on a smile and I am very polite and diplomatic. I have never criticised or complained although I have had every right to on many occasions. I have focussed on my child and on progress but I am never rude or hostile.

Perhaps we should appreciate that distinction before we start criticising parents for sharing anger.

I don't htink anyone ever thinks a total breakdown in communication is a good idea.

throughout my 3 years of fights ot get dd1 statemented, i was unfailingly nice and polite to most professionals involved in our case. there was the odd exception, which, tbh I then immediately apologised for.

but I think it is disingenuous to say the least to suggest that if you have a good relationship with your LA/professionals then you will end up with good provision.

the problem is it is a complete postcode lottery. there is no consistency at all.

but time and again we see people who come here who have been refused SA - the very first hurdle! - not told about POrtage, not told about Early years advisory services, or Earlybird, or Hanen courses. I do not know a single person (in rl or online) who was told the full story form the outset (the full story being what services were available, what provision they could expect)

LAs around the country fob parents off by refusing SA, schools fob parents off by saying dc are not "bad enough" to be statemented (or need to be a certain number of years/nat curr levels behind). time and again - how many people here were initially refused SA, but have ended up with full statements for their dc? if it isn't fobbing off then it is a widespread case of woefully undertrained and inexperienced staff, which should also not be happening - how can we be expected to trust LAs and health authorities when they routinely lie to us? (again, this is speakig from experience in 3 different counties, so not isolated by a long shot). LA also wilfully write illegal statements - again, this is aservice we are supposed ot trust.

how many threads are there here re: statement help? I know I would not have been able to get dd1's proposed statement amended in the way I would like without help form here - because PArent Partnership are not as impartial as they claim to be, and the LAs were messign about and ignoring expert advice as well as timelines.

and yet again, I am not the only one.

I do not advocate being rude and stroppy, but it is perfectly possible to ensure your voice is heard (and heard a LOT) while still being polite - and if your voice is not heard, well again the many, many threads here tell that story.

oh bugger - namechange was for another reason (glad I posted this first ).

Lenin - how did the playdate go? how brilliant

excellent, Lenin - a huge step forward, despite the wobbles.

I do think it's important to remember that many people post on here because they ARE having difficulties getting support, such as referrals from GPs or assistance from their schools. So of course, people advise them to push for it or fight for it. Many don't post when things are ticking along well, but more when they run into a snag, as that's when they really feel the need for support from others on the board. So that may account for a slightly higher incidence of those type of posts. Not to mention most of us felt uncomfortable and worried about kicking off too much if we did get fobbed off, as we didn't really know what we needed to do about it - didn't know what to ask for or who to ask. (although we're much better now )

And I do think that sometimes posters are worried that posting about good results or schools/GPs being cooperative may seem like bragging or might upset those that are in constant battle with their own trying to get support set up.

I know that I do tend to suggest regularly to people to make copies, take notes, meet with their child's care providers (both through the NHS and school) so that they know what's going on and can be involved fully. But that's not just a "make sure you have things in writing if there is a problem later" but also simple common sense. When you've just had the rug pulled out from under you with "your child may be autistic" or something similar, however, common sense can fly right out the window and you find yourself going on autopilot in a daze. Hence the reminder.

It doesn't matter how cooperative I would have been, my ds diagnosed with moderate to severe autism would have only got 1 hour a week intervention from a visiting autism nursery nurse who had 2 days training on TEACHH and who would tell me that my expectations were too high and that the gap between him and his peers would widen.

This is despite the National Autism Plan and government guidelines recommending 15-20 hours per week autism specific support.

My susequent evidence from an ABA programme evlauated independently, that shows ds capable of learning at 4 times the rate of his peers, never mind falling behind them has done nothing but prove how short changed he was being.

I do think my 10 years working in Local Authorities, with 4 years in Children's Services has given me an accurate picture of the difficulties the 'professionals' face however.

Pain is difficult to remember once it has gone. For those who have got provision that is working for their children, it must be hard to understand quite why it is going so wrong for others.

To go through the stress and cost of a tribunal to get full-time 1:1 based on evidence that was available prior to the final statement which stated none ruins the relationships between the parents and those 'professionals'.

I think getting your child into the right special school is rare. For those of us who have children for whom state special schools is not appropriate, the alternative is going to be littered with constant issues to address.

I'm with Star - my attitude is irrelevant. DS was offered 1 hour a week of portage & 45 minutes every 8 weeks of SALT. The portage was removed after 6 weeks because 'there's nothing we can teach you, you're doing everything right'. This was for a child with a diagnosis of ASD & Severe Language Delay & Disorder, a child with no play skills, no receptive language AT ALL, a child who was completely mute. They wanted to pack him off to a SLD nursery two mornings a week - for respite of course, there was no suggestion of education.

I actually have a very good relationship with the professionals involved with ds now. I have made two complaints, his SALT is now monthly (though no direct therapy, I use her only for assessments) and he now has access to good quality OT. My health visitor is superb, his paediatrician is helpful & responsive, we have a good relationship with his nursery - they are happy to let my ABA people in for training etc. BUT I place minimal demands upon them, he won't be getting a statement (we home educate), we don't ask them for any money for ABA, we subsidise his 1:1 ... they are delighted to cooperate with us

I refuse to have anything to do with social services & we got the CAF sent back because I will not answer intrusive & irrelevant questions or those that suggest there was be a CP issue. I make absolutely no apology for that.

DS would be absolutely stuffed if he was reliant on any of them for his education.

The SN forum has become very ASC focused which is sometimes disheartening for people like me whose child isn't truly ASC. Truly annoying are those threads that introduce an issue without even bothering to explain that it is about ASC, as if the OP assumes it is an ASC forum, not an general SN forum.

However, the forum is only as good as the people posting on it. If you lurk, you won't get heard. Old posters who come on for a grumble about newer posters and their new-fangled ways should comment at the appropriate time, rather than start a thread about how awful it is compared to the good old days

I am relatively new to MN but i have been fighting for my childrens SEN needs for years my eldest is not 22. But when you have a disability that no professional wants to talk about, and many other support agencies do not want to know about because it could cause funding problems for their own organisation, life can become difficult and very lonely, as you fight for your kids and like many other your own needs.
I have now have to rely on research papers to do the talking for me, due experiencing high levels of stress when others denied that my disability, Auditory Processing Disorder (APD) does not exist, both in the work place and from educational and medical professionals. When things get really bad i suffer from Post Traumatic Stress (which is why I sometimes stay off line for days at a time)
To have a meaningful discussion you need to actually research the complex issues, which are now at the cutting edge of research, and more detailed information arrives as research technologies improve. This means that all parents who have children with any SEN issues need to find the body of research which can apply to the problems their children may be facing, to understand the medical or cognitive problems. And to recognise the limitations and marketing needs of the programs promoted by some with personal experience which relates to the problems their child may have (which need to be documented when recommending a program), or a medical consultants recommendation or by a program provider who earns income by providing a program, or an organisation which endorses a program for funding reasons. Many of the so called well know support agencies fall into the "endorses a program for funding reasons" category it is how they raise their money as non profit organisations.
Some parents have been used as marketing tools by some less reputable program providers to endorse their programs.

So discussions regarding any remedial program should be supported by an International body of research papers that can provide a balanced view of how it may help a specific group of SEN children. And all should try to provide research based support for the information they provide when possible.

I am a qualified negligence lawyer and now work improving services in the public sector. This did not stop us being completely ......d over by professionals. Its all about the budget of course. Our LA has a bizarre and very sinister hold over all local professionals and the forces of evil were unleashed upon us when we asked for the special school place or ABA the LA EP had recommended rather than accept the 1 hour a term outreach and SALT we were offered.

Our LA broke the law (I know, I'm a lawyer what were they thinking)!
Some LAs just have blanket policies - all ASD children in mainstream unless they are physically hitting other children and out of control; their parents take us to tribunal; we are going to be sued; or the parents are incapable of looking after the child so special school is the child's only hope.

I have never seen the legal process abused in the way it was for my son. It was shocking. I also thought I had seen every dodgy legal tactic going but I have never seen a parent of a disabled child personally attacked in an attempt to discredit them or a witness blatantly lie to a tribunal. However these are standard practices where I live.

I didn't start off angry and bitter, the LA made me this way!

Even Brian Lamb sympathised with our story when I posted on a webchat!

Nice to see you back Lougle!

I have Auditory Processing Disorder (APD) which is a listening disability or having problems processing what I hear
The real problem with many professionals is that they suffer from Professional Auditory Processing Disorder(PAPD), they do not want to listen to parents who may know more than they do.

I have fought for my Daughter. I have had to take direct action when a professional was not delivering the service that should have been. I did have to get my DD1's statement myself.

Silverfrog, you are not misremembering that I was advised that DD1 was 'immature' and that they would perhaps consider whether she needed special school in March (when all the places would be taken).

I am not suggesting that life with a child with SN is plainsailing, for ANYONE.

Star:
"Pain is difficult to remember once it has gone. For those who have got provision that is working for their children, it must be hard to understand quite why it is going so wrong for others."

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. You also know what a battle it has been for me to get Social Services support, and we are only one foot in the door - we don't even have a Social Worker yet.

Bakelite:
Old posters who come on for a grumble about newer posters and their new-fangled ways should comment at the appropriate time, rather than start a thread about how awful it is compared to the good old days.

I resent that sentence. I have never moaned about the 'good old days'. I have never objected to new posters, and in fact, those who 'know' me will know that I was often one of the first to welcome a new poster, and point them in the right direction - often giving step by step details of what they could do, where they could do it. I gave detailed advice on DLA claims and what the Decision Makers looked for, and what language they expected.

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.

Of course you should fight for your children. But remember who the fight is about. And who it isn't against. 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.