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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

No dx but a bit of information

9 replies

rebl · 15/06/2011 11:56

DS has been going through a full assessment with CAMHS now for 5 months. Yesterday we got our 1st indication of what they are thinking.

He's got a 2yr delay in social and emotional skills (he's 5 so thats quite a big difference) .

He is very clever and can learn , especially logical things like maths.

He's to see the OT for assessment of dyspraxia and sensory processing problems as well as the above.

He's going to have 1:1 weekly intervention to work on behaviour, social and emotions to be delivered by CAMHS in school. They are going to put a behaviour program into school and home.

Because he can only follow one instruction at once he is only going to work on one behaviour at a time so we've been warned this will be a long process.

I was very upset last night after hearing all this. But this morning I feel a bit better about it. I guess they've not actually told us anything we didn't already know. At least now he's going to get some help. We asked about dx and were told that they don't like to dx, especially where there are significant other problems that could have lead to a delay (which there are) before age 6.

I guess I'm just that we've taken getting to crisis point before we've been able to get anyone to listen to us over his behaviour. I hadn't realised he was that delayed either. A friend months and months ago really upset me saying that ds was similar to her ds and needed to be treated the same way. Her ds was 2.5yrs at the time . I was furious and refused to see it yet thats what we were told yesterday.

OP posts:

IndigoBell · 15/06/2011 12:08

We asked about dx and were told that they don't like to dx - this is not a good attitude.

I'd be concerned that he's being treated for behaviour, social and emotions problems, when he actually might have ASD (or ADHD or any of a million other things).....

In my LEA there are two diff teams (BEST and ASD) and you really don't want a child with ASD to be treated by the BEST team......

Can you get a referral to a pead who does dx?

TheDuckster · 15/06/2011 12:18

You really should try to get a diagnosis.

You/he/they need to know what the issue is otherwise a lot of time may be wasted with wholly inappropriate treatment.

borderslass · 15/06/2011 12:19

DS is nearly 17 and went to a EBD school in primary [eventually] and attends a fantastic school for ASD kids which he leaves on the 1st of next month despite him having no diagnosis as children's team wouldn't diagnose anything except ADHD and complex LD's he was diagnosed at 2 as having GDD so basically they didn't know what was wrong.

He is now finally waiting for a formal diagnosis under the adult team its quite common this not diagnosing to avoid 'labelling' children.He is now also on new meds and a totally changed young man because of them.

smileANDwave2000 · 15/06/2011 12:21

im sorry its making you feel so bad we all go though that time of acceptance and when we finally really realise yes there is something not right especially when we hear it "officially" its like grieving and it is very upsetting to hear it for real, it will take you some time to come to terms with what they told you but your DC will still be the same lovely little boy nothings changed, the main thing is you will probably find now you get somewhere with CAMHS and school so think of it as a big leap in progress towards a better future for you DS and all of you as a family because once he gets the help he needs it really will begin to have a knock on affect at home. your friend was perhaps a bit tactless in how she explained her thoughts on your DS but im sure it was not intentional people not in our possition dont realise how emotional we feel inside about it but sounds like she was trying to help. i try to treat my DS the same as much as possible to his peers but you know and i know its just not always possible in every situation as basically they are not the same, but try and look on his differences as a good thing its what makes him him and all the more special

Original poster

rebl · 15/06/2011 14:03

He's going to see the psychiatrist soon. They want him to see a neurologist as well because he's had a CT scan (after head injury, so unrelated) that came back showing problems. I'm assuming once he's seen all these other people then he'll be near enough 6 anyway given the speed that the NHS seems to work.

OP posts:

IndigoBell · 15/06/2011 14:29

But has he seen a child development paed? All areas work differently, so it's possible where you live that wouldn't be an option...... But it's the person I'd want him to see - not a psychologist or psychiatrist...

mariamagdalena · 15/06/2011 15:15

Most paediatric neurologists do neurodevelopmental stuff too.

mariamagdalena · 15/06/2011 15:16

Just make sure that when you see them you discuss the issues in those terms, not just 'my child's behaviour is a bit troublesome and the nice people at camhs are sending me on a parenting course'.

Original poster

rebl · 15/06/2011 16:04

No he's not seen a child development paed. Its not even been mentioned.

I'm confused by all these people if I'm honest. I don't really know who does what but they all seem to want to help so that has to be good. They've not fobbed us off like has happened in the past and they have repeatedly told us its not our parenting at fault. I guess we're still at the beginning of everything and what we got told yesterday is more a list of symptoms rather than anything else.

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