Seeing DK today - feel Un prepared

[2boysnamedR]

Mentally and physically.

I'm not ready for what I think I'm going to hear.

I don't think I gave her enough reports ( as I have hundreds so only picked out the last 20)

I want a final answer. I just don't have the strength to hear it. I have heard so much before that's been hard. Every new thing just seems to slam another door. Still I have too know. 5.5 years on the nhs asking the same question

But I thinks there is more to him. She agrees - there isn't enough for it to be autism

Sorry DK wasn't able to give a clear diagnosis. DS2 is also complex (and DME). Whereas DS1 can pass for NT in public (most people interpret selective muteness as him being shy or quiet) he is obviously ASD at home as he displays textbook triad of difficulties at times.

DS2 has much less trouble with rigidity and meltdowns but there is no way he would pass for NT in public but not because of meeting the triad but because of language/pronunciation delay and because of poor social skills. But, quite unexpectedly, he can appear not only NT but empathic and wise. Yesterday was a bad day. DS1 threw his xbox controller and broke his TV and so couldn't play fifa (microsoft returned the £900 he spent buying players btw). DS2 had to be removed from the lounge as DS1 was trashing it and we were holed up in my office where I can lock the door (fun times).

When the storm had passed and it was safe to emerge, DS2 asked where DS1 was (lying spent on the carpet). DS1 just commented as a matter of fact 'yes, he usually does that when he gets stressed out'. I know he is just repeating what I have told him but it takes me aback at times. Unfortunately he did this during his ADOS (repeating what his teachers had told the whole class about a new girl being lonely and how they should befriend her) and is now going through the second opinion raft of assessments at GOSH. He has also been assessed by MS using the DISCO. She wrote in her report that he clearly meets the ICD and DSM criteria for ASD.

The diagnosis does matter in these parts. Access to the outreach team (county inclusive resource) is diagnosis led. DS2's statement is vague with the excuse that these are longterm targets. Trouble is that the school are ignorant and don't know how to translate into short-term targets. They refuse to work with mad, fantasist parents and can't get advice from CIR as they need a clear NHS diagnosis but they also can't get support from Behavioural Support as he is most likely ASD. Perfect Catch 22. Hence tribunal.

It is also the norm in these parts for SALT and OT to discharge despite need. According to OT, DC cannot be referred back from year 4 to year 6 but can be re-referred in year 7. I asked what about statemented provision and she said 'we don't specify and quantify because the statement is a legal document, but even if you get an indi assessment, the NHS won't deliver provision that has been privately specified and quantified'. Thanks for the heads up

I was hoping that if DK had said ASD I wouldn't have much trouble getting it signed off by the NHS but I will never know now.

Luckily OT here has been great and one service I could never fault. DK did say my ds is great at masking and learning skills around his traits.

As asd dx is needs based that's why he's coming below the levels maybe? If you do flap, but you can stop and replace it at 7 with jigging your leg as it's less noticeable then those asd traits have less impact? I don't know.

I think either way it was the right thing to do. Unfortunately I still don't think ASD will not be on my mind as he gets older.

Btw I do think it was worth it. No NHS doctor would pour over 20 reports and look at my private reports. They sure as hell would never sit and talk to us both for two hours. She is a nhs doctor and new his genetatsist. I get 15 minutes a year with his NHS pead now. Ds was reffered on to another pead who can dx asd on the NHS but god knows where that is now.

I can stop wondering now until he's 10-11 if things start to deteriorate socially.

tbh with DS1, DK confirmed the diagnosis made by MS using the DISCO. He had previously been refused ADOS because school reported that he was fine. It was the LA who queried the diagnosis and insisted that DS1 had an official NHS diagnosis and they only did this because of upcoming tribunal. The LA requested that DS1 see a local comm paed and asked her to form an opinion. Her opinion (agree - no further investigation (ADOS) needed) was clearly influenced by the fact that the diagnosis had already been made by MS and agreed upon by DK.

There is an advantage but it only really comes into force at tribunal. But apart from that, at that time with a different LA with different SALT and OT pathways, there was nothing that diagnosis 'bought' access to educationally and the NHS did absolutely nothing post-diagnosis.

It would have been worth it to me to pursue understanding and make an appointment with DK (and I'm glad she really gave the issue her full attention - she did the same for DS1) because it was only really after seeing her (and DS1 through her eyes) that the scales finally fell from my own eyes iykwim. But there would be nothing further to gain from a local NHS doctor.

Also DS1 was 12 by the time DK saw him. At age 7 I am 100% certain that the outcome would have been different.

Ugh! Thanks Keep, I think I agree with you. I agree there is a limit to what getting a dx will get you, I'm just wanting to know where his lang disorder stems from so he we approach it the right way.

I will be opened minded to going back in a few years. Let's hope it doesn't all fall apart from him.

I guess I might be seeing MS one day too. Let's see what this next hearing throws up. I have to be sure that his needs can't be met in ms before I go all out. He's happy in ms, that's the problem today. He's learning off the other kids.

Hi 2boys sorry DK wasnt able to be precise about your Ds he does indeed sound very complex, I hope that if you can get everything in his statement that he needs he will fare better at school!

To be honest, Dd3 has a diagnosis of Asd and school staff still forget and still upset her so I am not sure that you are at that much of a disadvantage really. I honestly thought getting the dx for Dd3 would be the answer to our problems but actually it turned out to not be the case.

Keep doing what you are doing and be kind to yourself!!

Good luck

I think there's always the option to leave it until they are older and go back if things change greener.