I am wondering if it's always worth getting a diagnosis/label

[LumieresForMe]

2 things really made me think.
I very likely have ME, have had for years and regularly struggle with it. But I have never needed a diagnosis on the ground that apart from, learn to manage your energy, there isn't a lot a GP can do.
Dc2 has just had an assessment for AS and after two years of hoping for a diagnosis, he came out 'absolutely fine' even though he still has meltdowns etc etc.
in my case, I've never thought a diagnosis or label would help me in anyway. I'm self employed, my work is scheduled around my own abilities. DH knows I can't do as much as I would like.
In dc2 case, I would have loved a diagnosis as an acknowledgement that dc2 does indeed struggle even though it probably doesn't appear that way from the outside/at school. And the label would have been a way in to explain to him how his thinking is different.
Not having this long awaited diagnosis made think though. Does he really need a label? Do I? What are the benefits of having a diagnosis when you know you aren't going to get any help (which the case both for myself and for dc2)? What could be the benefits of NOT getting a diagnosis?
Just trying to get on head right there, wondering if it's worth fighting for another diagnosis, with all the issues/efforts it involves or if things would be better left alone.

What do you mean it says more about the parent, that they are an odd ball or that they care enough to try to get the label so their child can be helped and life the best possible life they can?

I would expect that
1- the teacher getting the new class has talked to the previous teacher to see what us working or not
2- the teacher to listen to the parents when they say that X will help, the dc is highly anxious when .., even if it doesn't appear to be the case (because it's not unusual that the consequencescarentvseen at school but at home!)
3- the teacher has read some of the reports. Now the issue, as far as I can see, us the fact that you shouldn't expect a teacher to be able to read lots and lots of reports and to them know how to deal with the child. Some sort if summary is probably needed. But then if point 1- is done, it should be much easier??
4- for the teacher to work with the parents instead of starting withdraw idea that they are just pushy parents that think their child is 'special'. If I'm honest I would prefer my child not to be!!

Ou are right re the fact it's not always the most nerdy who are diagnosed. The ones whobgetvdusgnosed are the ones with parents able to read and do research for them selves and then have the time and energy to push for their child to seen/assessed. But IMO it says more about the system that about the parents. I thought teachers wNted parents to be involved with their child education and well being.

It can say they are unrealistic! not always, but often, like oneineight here, seems t think I will be able to read her "extensive documentation* of her sons needs, and doesn't seem to realise that if I'm mainstream that year I will have about 30-40 statemented children, and if I'm not in mainstream, then many more, and that however carefully any teacher plans and prepares throughout August, when it comes to September you find out what works for your class by trying it. It is often the diametric opposite to the notes you are given anyway, which can just be because a child reacts differently in a different combination of circumstances.

I once ploughed through a whole filing cabinet draw on private assessments done on one poor child and found one assessor had concluded her problems stemmed from being assessed too much.

I think oneineight is just enjoying getting defensive unnecessarily though. Obviously I look at reports, but equally obviously I cannot read or remember all of them, and as I said, often the neediest children have no reports. This is the type of attitude I mean when I say it can red flag the mothers.

lumineirs I agree with your post

May I?

I have a student who came with the ubiquitous 200 page Ed Psych report. Mainly saying he was dyscalculic, maybe, didn't cope with complex instructions, got anxious if questioned, shouldn't be asked to speak out loud in class/do tasks in a public manner and a lot of other restrictions that were intended to stop him being aggressive with his peers and us. Oh, and he wouldn't be able to complete the exam without 2 people in support, modified papers and 50% extra time.

Well! As per usual I assigned the Big Label document to memory and, on first meeting the class, tried to identify the little darling. To my surprise, the slightly shy but quite chatty kid turned out to be the object of fear.

It turned out his mum had had a hard time with him when he was 4 or 5 and had her first Ed Psych report. She had kept these up in order to ensure he was never disadvantaged. When he got to me (in FE) he bore no resemblance whatsoever to the kid in the report (paid for by mum).

He now has GCSE in maths, is an activities leader, leads and educates 100s of kids every week and has no problems whatsoever with aggression.

So yes, sometimes, parents are the problem. This young man was no longer 5 but his mum was still protecting him as though he was! And the Ed Psych took her money and copied up the by numbers, bloody expensive report!

And this is not an isolated case.

Why would is it unrealisitic for a parent to expect those who they are entrusting the care of their child and their child's education to, to read the reports?

To go back to my original question, one of the issue for me is the fact that I know dc2 will not get any additional help. The diagnosis would be for his own benefit. I know there just isn't enough SALT, child psychologists etc to work with all the children that need it and dc2 would be bottom of the pile because from the outside he is coping.

Similar than me where a diagnosis would only give me that. A way to say 'yes I'm ill' (and chronicAlly ill) but no other help/medication other than a few support groups.

As it happens, I have found my own way to cope just as I found my own ways to support dc2 and help him cope.
So then what would be the point?

I am very worried when people say they have fought to have a diagnosis but no one takes any notice or knows what it us about and just need to start from scratch again and expms

Sorry...
And explain and convince again.

Are you an Ed Psych? Have you repoted the Ed Psych to the HPC for professional misconduct and fraud?

Because, tired as I've tried to say, the reports can be too long, and are often not helpful. ( particularly private ones) They also miss out some of the most needy children.

To read the all you would most likely need at least 2 weeks full time in school with no children, even if you did, you wouldn't be able to remember them all, and even if you did, it would not be worth the time and energy, and would not help you look after those children.

Short notes from a previous teacher are more helpful, if the teacher is contactable.

We do read them! But, in FE, it is also my job to make sure the not quite child is employable when s/he leaves.

So sometimes we read, assess (work with Learning Support, Safeguarding Teams etc) and stretch and challenge the kid to achieve its potential in spite of the report. Sometimes in spite of the parents too.

The point is that we have a hard job, damned if we do or don't and sometimes, not always, mum doesn't always know best!

And I can only advise that you NEVER pay for an Ed Psych report. If your kid gets one, all well and good, but paying for one does not guarantee quality or accuracy, believe me, it really does not.

Luggagecarousel I hope neither of my 'labelled' children ever have the misfortune to have you as their teacher.

I would not ever expect a teacher to wade through all the reports in either one though. A summary, th statement, and internal school file detailing past issues and teacher's thoughts/discoveries would do, imo.

I am truly shocked and disgusted that a teacher sees diagnosis reports on children as "rubbish to wade through" and doesn't read them.

I do have hope though OP. One of our conditions was on the front page of the Telegraph last week, as they think a third of those with ME/CFS really have that and the NHS gave a response as it was a little inaccuratly reported in the press, not just Telegraph. So it will have raised awareness. I know that the experts we saw, are going around trying to educate their colleagues, it just takes time.

My children have not got Ed Psych reports, they have cardio/rhumy/phyio/ot reports, who cares what report it is, the child has seen an expert and you are ignoring the report and opinions, because you think as a teacher with no medical qualifications you know better than parents or experts.

I don't disagree with everything you've said Luggage, I too feel that no matter what is written in a report I need to work with a child for a couple of weeks before I get a real sense of how to help them. All children are different regardless of any other labels they might have, I agree wholeheartedly with that.

However, I think to suggest the alot of parents are just being fussy or attention seeking or whatever to get a diagnosis for their children is extremely unfair and not what I have observed at all in school. I have huge sympathies for parents whose children are struggling at school have found that in many cases some sort of assesment/diagnosis is very helpful and goes some way to reassure them that there are ways to help their child and flags that up for their teachers too. It can also help them to understand their child's behaviours.

Me? I work closely with an Ed Psych and have a background in psych. It is not unusual for post 16s to arrive with a vaguely worded report that claims/explains a lot but is all smoke and mirrors when it comes down to specifics and an actual confirmation of diagnosis. Nothing to report, unfortunately, opinion, professional or otherwise, is just opinion.

Such reports are why we have an Ed Psych on staff. We shouldn't have to, but it has turned out to be quite cost effective.

In addition I would add that this can also open up avenues of support for parent, child and teacher which is very welcome indeed.

I know I have gone to see my dc's teacher and gave them the SALT assessment.
The conclusion was clear 'assessment is in line with AS'.
But then the report itself was unusable by the teacher/SENCO. The answer was 'I have never seen a profile like this. I don't know what to do with it.'
And because dc2 is very quiet, why bothering to spend lots of time and energy to find out?

Well on my pov, because the consequences were seen at home through daily and multiple meltdowns where his siblins was regularly hit and everyone was walking on eggshell.
But no one has ever wanted to believe me. Maybe they should have asked dc1....

This is why I am having hesitation to really pursue a diagnosis. What is the point if no one is going to believe it??

Can't be bothered to argue as actually I don't enjoying getting defensive unnecessarily anymore than I have enjoyed the two year battle to get appropriate support for my sons. Going to pull out weeds from the garden instead as will be infinitely more productive.

Lumieres, I have just had dd2 assessed on a similar basis. School weren't seeing anything (well no, by the time I'd pre prepared her, coupled with her love of rules, they wouldn't). But we did, at home. She has AS.

School are paying a bit more attention now, and hopefully we can keep ahead of the game and avert any potential future crises (dd2 is 7)

Luggagecarousel I hope neither of my 'labelled' children ever have the misfortune to have you as their teacher.

How do you know they don't!

But no one on here s able to suggest what they want me to do differently, bearing in mind the volume of reports that land in my class room mean reading through them is not an option.

luggage is the hand over period notbthe time when teachers should pass that sort of information to each other???

Dc2 teacher didn't even know that he was going to be assessed by CAMHS.
And dismiss any anxiety to do with school as 'well he will have to learn with it. What do you want me to do?'

That is what upsets me, even with diagnosis, and talking to the school they told my child to take her head off the desk and sit up, knowing she was feeling faint, and refused her medical aid, she has a dignosis of vascovagal syncope and is a few heart beats away from a PoTS diagnosis, and called her rude. You see the expert Dr's and their detaield tests can't be right, my child or I can't be right, the teacher knew best, and left my child ill and their brain short of blood/oxygen, it is ok though the teacher faces no consequences as they deny it happened, except this time as my child recorded it and we made a transcript. Social servcies do nothing to protect your child from schools, they tell you to complain to the school, no wonder Teachers behave as they do, no consequences and LA's can't do much as most are academies with as OFSTED found some odd balls for governors.

Lumieres, do get a diagnosis. Not all Ed Psych reports are impenetrable tut. Many are invaluable but few do as luggage, myself and many others would like - precis it into useable notes. We have a 15 strong Learning support team, not TAs, but SEN specialists whose only job it is is to translate Ed Psych reports, write useable documents and track and support the student.

What you need to find out, once you have a diagnosis, is how the contents will be transmitted to teachers. It needs to be a working document that gets used, not a Big Label document that gets turned into hundreds of Little Labels, that bury teachers under a list of impossible Dos and Don'ts. As you have found out, teachers and SENCOs often cannot use a report that has no back up.

I hope you find a good support system for your son AND that you find it in time for you to remain objective and calm.... good luck.