'We don't like to diagnose / label anymore'

[2boysnamedR]

Sorry me again! Been at this game for years but having the toughest month of my life. I am being told that if my ds has dyspraxia or asd then they don't diagnose these any more. Only a MRI would reveal dyspraxic brain function ( not his symptoms maybe?) is this true?

Why is this so bloody hard? Why is no one on our side?

Nonsense (took me a while to find non sweary word). All of it. Is there any dyspraxia charity who could advice?

My ds is severly dyspraxic but he in his case it falls under the GDD label - however he had MRI done with no findings.

You can look up NICE guidelines for diagnosing dyspraxia and send it to whoever told you this.

Or go private...

Who is telling you this pile of poop?

What?! I don't think a scan will tell you anything tbh....

We have been told they don't always give a dx, so I am concerned we will have gone through this difficult process for two years and come away with nothing.

An OT diagnosed my son's dyspraxia. He's never had a MRI.

They are just trying to save money!! If they dont diagnose they dont have to provide services and

SENCO at school told me this and that we will never get a statement. My OT said she can not give any diagnosis as she isn't qualified. This all does up what I said to my HV as what is point of having these services. I think I need to presume that everyone is my enemy and they are all liers

I think I need to presume that everyone is my enemy and they are all liers

Sadly, yes - this is the case for so many 'professionals' in the SEN area. Although the worst are the SEN pen-pushers at County level, who have probably never met a SEN child in their entire life!

I think I also need to use these kind of statements as evidence for official complaints. Who am I to say ot can not diagnose? I was told my son needs a 21 month delay to get a statement in Surrey. But another mum has a statement at 2.5 years for a walking talking child ( I don't know many five month olds who walk and talk so I guess he isn't 21 months delayed?)

Leaving aside issue of importance of 'label' for a statement, it is important to remember a label is often just a posh way of describing a set of difficulties.

Dyspraxia-general difficulties with movement and co-ordination
Dyslexia-ditto with reading
Dyscalculia-ditto with maths

The danger is that the label becomes an end in itself.
'This kid has x, y or z, thus I cannot change that.'

Someone recently told me with great confidence that a child had dyslexia. Very same person was making no great effort to teach the child to read.
Why? Because she was dyslexic of course!

OTs do not and will not diagnose (as in give a DX). However, they can and will identify specific difficulties. AFAIK nly a paediatrician or a edu psych can make a DX.

Has your DS been referred to CAMHS?

Statements are not to do with whether or not you can walk and talk - have a look at the ipsea website which dispels some common myths. It's certainly true that many LEAs try and avoid statementing because they cost money.

In response to the OP, tell them it isn't about THEM and blanket policies are illegal and discriminatory.

Kiri - I hadnt been aware of camhs until you mentioned it.

I have dyslexia and a degree and a corporate job so I know what it's like to be told 'you will never....' Then rub someone's nose in it as 'I did' still my life was harder for it, I felt ( and still do) felt weaker because of it. My informal diagnosis was at 17. I don't want this for my child. Too right it made me a fighter but at a cost.

I wish there were a guide to the whole thing - it's like feeling your way in the dark with enormous obstacles every step of the way :(

Stuff and nonsense!

Though for a firm diagnosis of anything, you need to go via CAMHS or a paediatrician, depending on how services are organised in your area. They should then look at all the evidence from all professionals involved.

And dyspraxia has numerous causes. Often it's down to hypermobile joints having poor proprioception because ligaments are too stretchy and your brain isn't getting the proper feedback that tells it exactly where your hands and feet are etc.

For the love of god! is there anything that anybody should do actually being done?!

EP told me if my Ds continues to struggle the next step would be a statement....but it's highly unlikely due to being cognitively able....ok so we'll just let him struggle then!
The school are just letting him spend 4 lessons staring at the same page of work because he has had tests to show he is 'able' so he just CBA.

moondog that is true. The S&L department can't help my Ds because he has a Dx of AS so all his communication difficulties are a part of that....After a very heated discussion with the Head of the department. I have managed to get an appointment but chances are he will get discharged again after they have told me same again.....doc martins will be coming out that day for sure.

Every counties departments work so differently, you never know where to turn. I read that the paediatrician in our area Dx's dyspraxia then when we went to the appointment she referred to OT because there could sometimes be an overlap of the symptoms of AS and dyspraxia....so I'm guessing it will be the OT then?? .

Your right 2boys it is hard work and by the sounds of it I have only just started a journey you have been on for a while.

Ouryve - that's sounds like my son from what the OT says.

Kiri It's like being on a boat without ores hoping luck shines on you and the wind blows you onto a nice beach - not over a 100ft waterfall - which is what see loaning my horizon!

Or looming on my horizon even

'The S&L department can't help my Ds because he has a Dx of AS so all his communication difficulties are a part of that....'

I find this genuinely perplexing.
Many people have symptoms which are because of an underlying cause.
I don't like to get to medical with S&L but to use an analogy, do you not deal with the pain felt by a cancer sufferer because 'it's part of the cancer'?
Not give someone with a broken leg a crutch because 'it's part of having a broken leg'
Not give a myopic a pair of glasses because 'it's part of being myopic'
Not give a person with diabetes insulin 'because it's part of being diabetic.'

The skewed logic of it is utterly bizarre. it would be better if people just said 'I'm sorry but we don't think we can help with this issue' than come up with these surreal excuses.

I'm looking forward to my meeting with the SENCO tomorrow (who hasn't met my eyes since she admitted she hadn't read the report with recommendations from the OT which she'd had for over a week).

It feels like the people who are being paid to care, simply don't

Crazee yes I been fighting the long fight for a longtime. Tbh people don't want you on their budget hence 'it's not my area' or 'not from my budget' still someone has to pay or we are setting our kids up for failure and the doss house and surely someone pays then? How do these people justify their jobs? Sounds like its it's paper pushing with no purpose to me

I wish the standard line was ( forgive me being crude) 'life is shit then you die' because at least then I could give up my futile fight to get my son a basic level of care rather than fighting tooth and nail for something I will never get. At least then it would be clear where we are going

My DD had a normal MRI.

She is nearly 7 and has trouble feeding herself with a spoon.

The scary thing is when they are not liars but genuinely believe the crap misinformation they are passing on