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.

We feel as parents dd teachers have a fantastic grasp of dd her personality, needs, difficulties, how to work on areas of need. I would be shocked and upset if they disregarded dd dx and her statement, and did what they wanted.

Goldmandra, sorry, but that would be the worst thing to do for some kids (see my earlier post).

Telling a teacher to keep a summary sheet with their planning is insulting too, like teaching your granny to suck eggs. We do. It isn't that that is the hard part. It is getting the objective nuts and bolts out of a report and translating it into doable things, doable things that have an effect other than completing a tickbox.

And for every kid you think is done a disservice by a teacher waiting to see how they develop in new situation I'll show you a kid who realises they are growing and changing and takes a new step forward.

As you may have guessed, I read what luggage wrote and interpreted it differently. I equate what she wrote with my own work, and the reams of repetitive, no help, barely individualised Ed Psych reports and finding that a) I need the help of our own team of specialists to translate it and find the useable nuggets b) The same trite suggestions, over and over again c) We (specialists and myself) usually agree to let the student suck it and see for a little bit, to see what they will make of the new setting, new people etc - a little bit of trial and error benefits everyone.

I teach them I don't parent them. I have a different end goal for them. I may not treat them how their parents think I should.... but I do it from knowledge not ignorance.

Though I wholly acknowledge that not all teachers do this! But I don't think Luggage is one of them.

Luggage, you are, yet again, talking nonsense.

The teachers at both my dds' schools not only read the filing cabinet of paperwork, they are the main instigators of much of it.

each and every on eof dd1's teachers reads the reams of paperwork that accompany her wherever she goes. her IEP alone is a minimum of 20 pages. And they have not only read it, they understand it, understand why it has been written, and follow it.

Which would be why she makes the progress she does.

At dd2's school, I spent half of today adding to the paperwork which will follow her through education. To try to meet her needs in just one lesson, I spent 2 hours meeting with 4 different members of staff (their insistence, not mine). Together we formed a 20 step plan to improve dd2's experience.

Two very different schools, for children with very different levels of need. But thankfully (or maybe luckily, since it would appear you are saying this level of differentiation from teachers is not standard), both happy to do what is needed to ensure the children in their care get what they need, and are understood by all who come into contact with them, thanks to the paperwork which is read, rather than just shoved in a filing cabinet and dismissed.

Nomama, you too are not covering yourself with glory with what you type on this thread.

You clearly have little to no idea how damaging the trial and error approach can be for many children. which speaks for itself, tbh, and shouts out loud and clear how ill-equipped you are to deal with children with significant needs.

I have two with Tourette's syndrome. They're very good at appearing normal in public - but are severely affected at home.

Unfortunately being 'labelled' hasn't helped them with some teachers -with luggages attitude. They see a 'normal' child and have no ability to understand that that child is suppressing tics to appear normal. Those teachers don't have the intelligence to comprehend that there's more to a child than meets the eye.

But my children still need the diagnosis because they deserve the acknowledgement that they are coping with a severe medical difficulty and managing mainstream education.

Telling a teacher to keep a summary sheet with their planning is insulting too,

Luggage asked what could be done differently. If you don't feel able to get the information from the reports get it from the parents and make notes. I fail to see how that could be the worst thing. As an Early Years practitioner I find the parents to be an invaluable source of information about a child. They are the ones who have spent the most time with the child, spoken to the experts, seen many of the assessments in progress, and seen which strategies have been tried and failed in all different situations.

I don't expect to parent the children in my care and I don't expect my DDs' teachers to parent them. I expect them to treat the information gathered by others about my children with respect and use it to ensure that their needs are met.

I have come across too many teachers like Luggage who think they can work it all out for themselves. The last teacher who did that to my DD2 caused her to miss several days of school and was told to apologise to me after the head teacher intervened.

Every time you put a child like my DD in a new situation she cannot cope with because you didn't take the trouble to read the paperwork you set her back. That isn't justified by the number of children who do cope with the new challenges. They could have been presented with those anyway. Knowledge of a child does not prevent us from offering them opportunities to progress.

I am going to hide this thread now because I have come across far too many teachers who think they know more than all of the SALTs, Educational Psychologists, Clinical Psychologists, OTs, specialist teachers and other experts who come together to make diagnoses and compile statements so I don't need to hear more of that on here.

I thank my lucky stars that DD1 will leave the school system in the near future and I will soon have my DD2 in an independent specialist school where the teachers are not so arrogant as to think they know better than the professionals who have assessed her. They are, thank goodness, knowledgeable enough to understand the damage they could do by trying to work out what she needs by trial and error!

Alarm, you have misunderstood me then.

Goldmandra, I have said I am in FE, other end of the age range. My job is to help each student become more independent and employable. As I have said, we have a large dept of fully qualified SEN specialists, who I work closely with. The trial and error I refer to is closely monitored and documented.

I don't ignore all Ed Psychs, just those that take hundreds of pounds to print out dross that allows desperate parents to think they are doing their best for their kid, rather than helping them see that their kid's behaviour is getting worse because they have grown up a bit and what used to help is now a straight jacket.

If you read what I typed in previous posts you'd see I said sometimes... not all. I am not arrogant or stupid... but I am often saddened when it becomes obvious that a student's behaviour is partially because he is not being allowed to grow up at home... he has his place and he must occupy it. The family have become straight jacketed into certain behaviours and they can't break the cycle and there is no one out there who will work with them as a family.

As you might be able to tell, I am reading your point of view and seeing the same narrow mindedness and arrogance you see in mine.

Ok nomamama I'll give you the benefit of the doubt if you can explain to me how exactly you know what goes on in student's homes
please?

What? I do the obvious. I said, I read the damn paperwork. I liaise with colleagues. I listen when the student and their parents talk to me.

When the parent is exasperated and the student getting angrier... we refer the students to our counsellors and parents to whichever external agency is the most appropriate.

What did you assume I do, guess, make middle class assumptions?

No I wasn't assuming anything, merely asking a question and pretty politely too I thought. Best get some sleep like I'm off to do.

Would it help to know I run a FE department that exists only to do this sort of work?

That this is what I do for a living? I teach across college and support the most vulnerable students in becoming independent and employable.

Nomama in my experience with myself and dc2, it is true that there is a need for some flexibility as things are never the same from one week to the next.
Something I can't do one week I can do it 2 weeks later. Something dc2 couldn't cope with 6months ago he happy with now. Because yes children are growing and changing.

Clearly there are things I and dc2 will never be able to do. Don't ask me to climb Ben Nevis unless you want to have to call the rescue team.

I completely get that and the fact some reports are unusable by the SENCO and teachers. They give information but no idea of what it means in the real world.
However what most people have read (and what I read from luggage too) is a different story. It's the one of teachers who reject the diagnosis or the issues raised by parents as over reactions because they can't see them at school or they don't create any problem so everything is fine. It's the teacher who has decided that they know better than the specialist and disregard the advice. It's the one who can't be bothered.
Unfortunately, even with a child who actually doesn't need much support (or maybe because if that?) I have met these reactions too. I can't imagine how hard it us if your child has much more complex needs.

Lots of things to think about there. One if which is the possibility to have some assessments done privately and telling the school. Then if the need arises, we have the diagnosis. And a way to explain things to dc2.

I'm also pretty sure that atm having a diagnosis for myself won't really help but will cost me a lot if time and energy, energy I don't want to waste.

Sorry I meant 'having an assessment done and NOT telling the school'

I so want to write a long reply to this, but I don't have the time (work beckons).

6 years of mainstream education did nothing for my child, the attitude of suck it and see and square peg round hole was prevalent, disregard for a diagnosis and subsequently a statement was normal practice, and when that failed to garner results a specialist teacher was brought in to make a report, suggestions within that report were also partially ignored and eventually the school and my child parted company.

Fast forward a number of years, the current school are doing a great job of repairing the damage, it's been a long slow process and it is by no means complete. Knowledge and understanding, compassion and patience from the staff are making a huge difference.

Acceptance and friendship from other pupils have also made a difference.

BTW a label is something you put on your luggage, a diagnosis is just that A DIAGNOSIS.