Getting back on the DX wheel - what do I need to take to GP appointment?

[LyndaNotLinda]

Hello lovely SN board people :)

I have been given a kick up the bum on a thread last week to get my DS formally diagnosed by the NHS. He is now 9 and was referred for ASD assessment when he was 6 but then discharged once they decided he didn't have ASD - while the paed agreed there was a 'problem' she was adamant that she'd been asked to assess him for ASD. I was so pissed off and couldn't face going through the whole rigmarole again so had him assessed privately and he was diagnosed with dyspraxia and SPD.

His school has accepted that dx and put a number of adjustments in place and he's on the SEN register (not got an EHCP as he's academically 'too able' apparently - that's a whole other issue!). Anyway, I think he needs a formal NHS diagnosis to get the help he needs in secondary school/extra time in exams etc. So have made an appt with GP next week.

The GP has got a copy of his private DX and I assume the report from when he was referred to CAMHS for some mental health issues he was having a couple of years ago. Do I need to take anything else with me? I have a massive file of reports from when I applied for DLA but he's obviously older now and a lot of those are out of date.

[LyndaNotLinda]

He was diagnosed by an occupational therapist who specialises in sensory processing disorder rather than a paediatrician because I knew he had sensory issues.

I'm hoping to keep him in mainstream for secondary

[Youarentkiddingme]

I agree with zzzzz a dx is a dx regardless of who gave it. Many Drs work NHS and private and many people only see private Drs.
The school should be putting in needs based support. This can be formed by current reports and also an ed psych report of he's not already got one.

Don't let anyone treat a dx of a 'behavioural' 'neurodisability' differently because it's private n they would a specific 'medical' (eg can be proved by specific testing) dx. If it was diabetes you wouldn't be expecting a NHS dx as well as a private one to get fridge access for insulin.

[LyndaNotLinda]

Just thought I'd update this thread as I decided to go along to the appointment anyway. My GP thinks there are lots of other issues and that he needs to be reassessed by an NHs paediatrician rather than just an OT to get NHS support and more help at school, particularly as he moves into secondary.

I took Polter's marvellous fact file with me plus an additional list but in the end it was his behaviour at the surgery that swung it.

[LyndaNotLinda]

ynoti? :o

Thanks zzzzz - I know you didn't feel it was worth me going but that helped me think through my arguments. So thank you :)

[mummytime]

Your son will not get "extra time" just because he has a diagnosis. That just isn't how it works. The school will have to access him, either internally or by a visiting qualified professional.

Diagnosis can be good and useful, but isn't necessarily going to get more help at school.
But a diagnosis can be helpful to counteract "negative labelling", and if the SENCO is very on the ball might get you invited to or informed about helpful interventions.

[LyndaNotLinda]

zzzzz - yes, I think getting the GP on side is crucial, plus getting him in the system locally. The specialist I saw was in London (we're not) and focuses on sensory issues. I suspect DS has a lot more going on and I'd like a proper NHS diagnosis because I think it gives me a lot more leverage.

mummytime- I hope my son will get "extra time" in exams because he has processing and physical issues. I'd like to think that the school recognise that all by themselves but on current performance I'm not sure that's likely. He has had lots of reports (I have a huge file) but the recommendations are a few years out of date and he hasn't been seen by his SENCO or assessed by an EP or any other external people for 3+ years. He has had NQTs for the last 2 years too which hasn't helped.

The intervention he's had has really fallen away since he's been in his junior school and he is really struggling to keep up (physically, not academically) but they don't seem to be putting anything in place to help that. He's doing fine academically at the moment but is really struggling emotionally. And he's starting to fall behind which is destroying his self-confidence. I hope that if I have some recommendations from our NHS Trust then they're going to have to implement them.

And fwiw I don't know if you mean to sound aggressive but that's how your post reads

[mummytime]

Sorry funnily enough I was also trying to do several other things at the same time as posting - I actually have a RL.

Primary school and secondary are very different in my experience. AND there is still a silly system where it can get easier to get help the further through education you have struggled. For my DS the amount of "accommodations" he was allowed at Primary school were much less than for GCSE (eg. No extra time) and if he gets to Uni he will be able to use things like dictation software. Actually as an "adult" he is being allowed far more "extra time" for his retaken yet again English GCSE, than he was ever allowed at school.

If your son does badly enough in the processing and other tests given at his senior school,mother regardless of any diagnosis he should (depending on how good the school is) get his extra time. One of my DDs gets extra time and has no diagnosis, no one has pinned a label on her to say why she processes so slowly. My final DD has a diagnosis and doesn't need any accommodations in exams, and won't get any.

I'm not being aggressive or trying to put you off seeking diagnosis, just being realistic about what it will give you. (Despite Daily Mail headlines about parents seeking dyslexia diagnosis to get their children extra time.)

[LyndaNotLinda]

I apologise mummytime for misreading your tone wrong. Please forgive me. I'm tired - all this stuff is bloody hard work even when it goes well. It's the build up of adrenalin I think.

Thanks for useful words. Will see how we get on!

[2boysnamedR]

Dx of ASD is needed for some of the interventions here ( like socail interaction support ) but if I'm honest both my older boys don't have asd and still accessed that support ( possibly only a diluted version).

ASD Dx can help at school when you have a solid reason to mention it - like "if you want the best from Ds in this situation then apply the rules, he cant go against a rule" but school could do that anyway without Dx.

I have my eldest NT ( but strongly suspect he is a bit asd) in a school that can tap into his needs and don't give a hoot why he's a bit quirky. Then his younger brothers school needs to be beaten over the head with his Dx.

I will never chase for my eldest toget a Dx. But his younger brother, yes I think we will be looking into it again.

If you think it was right, then it's right. If you think it's not worth pursuing then it probably isn't.

There is no magic key that comes with a Dx, in fact it's possibly a great reason to stop all NHS support. But it's not a worthless thing either.

There's no standard formula to follow. That's why we are gathered here surely. If some one has the magic one size fits all solution then I will be the first to grab it

[mummytime]

I know we're all tired, and it is a hard fight. Also as: " NT children tend to resemble each other but each SEN child is quirky in their own way".
To misquote and vastly over simplify.

Forum like this are good, as every strategy shared might be worth trying, but if it doesn't work for you/your DC now, then just try something else.

[LyndaNotLinda]

Indeed. If my strategy this time is more successful I will let you know. I certainly know what I'm doing a bit more this time round - last time it felt like navigating through fog with no idea of what direction I was supposed to be heading in

[BlackeyedSusan]

I have found diagnosis to be useful with a school that were, shall we say, not that helpful with additional needs. they had to do something. schools that are helpful will do it anyway. I have found it easier to get help for a child with a disability than the other child who also has significant difficulties with different things. they are supposed to do stuff but sometimes it helps to have the diagnosos to focus their minds a little.

mind you, I am coming from this as having a child who is supsect has dyspraxia but has no diagnosis.

[mummytime]

Diagnosis was invaluable for my DD, as it gave strength to my argument that she was struggling. Rather than the Headteacher's view that she was nasty and a bully, and we were probably neglectful.

[2boysnamedR]

I have to say that my dyspraxic sons Dx was priceless tbh. To have it writing stopped my fears that I was just going mad.

Having some one explain in detail why he was just under the asd Dx again helped me to see things very clearly.

Also knowing that the dyspraxic child was was in the gray area just over the criteria but not bad enough socailly has helped me to see that his younger sibling is severe / profound.

What the school / la / nhs do with that knowledge - not much tbh but it helped me on personal mental health level.

[LyndaNotLinda]

I wonder if DS also has ADHD to be honest so I think that a reassessment might actually get him some more help (as they do actually provide support if you have ASD or ADHD here).

I was the opposite 2boys - I did the burying my head in the sand thing and was shocked when the school raised it. Now I look back and realise that all those people who used to say 'DS is absolutely unique - I've never met another child like him' weren't necessarily meaning it as a compliment! (which entirely plays into your point mummytime).

[2boysnamedR]

I had a podiatrist once tell me at 18 months Ds really, really needed to be seen by a peadiatrition. I could understand why. I only thought about what she meant when he five.

I wish she had said "because I think this is dyspraxia"

To be a mind reader would be great. So much reading between the lines. But again a firm diagnosis stops that. It also slams a lot of doors in your face hard.

I would have loved to hear both times it wasn't dyspraxia, asd, language disorder, developmental delay, genetics as those words can never be taken back. But said or unsaid it's there all the same.

As a scientist I like my cold hard facts. Painful though. I was happier in denial but that ship sailed many, many years ago. I think finding out at this point would be hard. But it could never have been a good time.