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Another disappointing Paed report.... (winge alert)

(17 Posts)
Handywoman Wed 20-Mar-13 13:09:18

So I have finally received the Paed's report. At the appointment she seemed very clear indeed that dd2 will have an official diagnosis of ASD when her ADOS happens in ten (long) months' time. She herself said 'it's not so much about the diagnosis, more about the support' so why-oh-why-oh-why have I received yet another wet letter which is essentially neutral stating that 'the best way forward would be for formal assessment in multidisciplinary assessment clinic'. End of. In fairness the letter does state that dd2 has 'difficulties with social understanding, difficulties coping with change and appears to present differently between home and school [...oh there is so much else, Mrs P. D. Attrition which we discussed, and you agreed]'. But that is it.

If Paed had written what she said to me (that "we have enough for a diagnosis of Autism" and "you understand her very well") then the school indicated they would cement everything into an IEP and refer to Autism Advisory (I am under no illusions that Autism Advisory is nothing more than another box to tick btw) but now surely neither of these things will happen and we just have to keep on waiting and everyone will continue sitting on the fence and I will have to keep banging my head against a brick wall with SENCO. I know everyone is going to tell me (quite rightly) that 'IEPs and other interventions should be set up based on need rather than diagnosis blah blah blah' but SENCO indicated that it doesn't work that way with her because she is not that sure of the issues really.

Meh...... parents evening next week, SENCO has still failed to read with my dd2 AT ALL as planned over the last five weeks (was meant to be weekly) and with this limp lettuce leaf of a letter from Paed I feel like the terra firma under my feet has turned to quicksand.....

I feel my energy being sapped! Someone give me hope????!!!!!!!!!

Meh.... and more meh....

PolterGoose Wed 20-Mar-13 13:22:26

Hope confused

Sorry, nothing constructive to say sad I do know though how frustrating it is to know that support should be needs-led but in reality for many schools nothing really happens until there is a dx, certainly happened for ds, we wasted his first 3 years at school because school were adamant he couldn't have AS, so didn't use appropriate strategies, I did feel very smug when I was proved right grin

KeepOnKeepingOn1 Wed 20-Mar-13 13:30:07

I would phone the comm paed and ask her to recommend that the school put support in place now rather than waiting for the results of the ADOS as these are likely to be confirmative of ASD - early intervention is not waiting for an 'official' diagnosis and the SENCo is not suddenly going to find enlightment when a diagnosis is made or be provided with resources by the comm paed.

The IEP is not supposed to be a one-size-fits-all standard ASD IEP but recognise and make provision for the ways in which 'difficulties with social understanding, difficulties coping with change' etc impact on her day to day behaviour and learning in the classroom in a bespoke way depending on how Handygirl's difficulties manifest themselves.

In these parts though I know that a diagnosis is needed before you can access support services.

Handywoman Wed 20-Mar-13 13:31:31

I know I know, what can one say? It's not Paed/SENCO getting shouted at constantly every bloody morning and night because I have not [insert any minute detailed aspect of something that is required in dd2's mind here] or having to deal with anxiety and meltdowns and demands and being constantly drained, knowing that actually Something is Wrong and Needs are Not Being Met. I really thought that we had got somewhere, and in reality we may as well just have festered and languished on the sodding 2-year waiting list while everything falls apart in slow motion, rather than go and see Paed. I really want to write to this Paed and ask her why she could not write a more effective letter with a bit of, you know, clinical opinion in...?? but can't think how to do it in a way that won't get her back up. Grrrrrrr. Angry.

PolterGoose Wed 20-Mar-13 13:43:40

Dear paed

Thank you for your letter dated x. At our meeting on x my understanding was that you considered mini-handy to have an ASD, but that an ADOS would be carried out to fine-tune your assessment of her needs.

As you know I am having difficulties with school not meeting dd's needs in the absence of a formal diagnosis. I had hoped that your report would be more explicit as this would provide evidence for school to implement the support and adaptations which will help dd make progress.

I would be grateful if you could review your notes and consider whether you have sufficient knowledge of dd to make a diagnosis.

???

KeepOnKeepingOn1 Wed 20-Mar-13 14:16:02

It's not really the comm paed who is being obstructive here. She has written enough for the school to cement into an IEP tbh, the school don't need to wait for a formal diagnosis by multi-disciplinary team.

I know what it is like trying to get support when the school don't really believe that provision is necessary - I went private in the end. Even after the diagnosis though they arrogantly comment that 'they can't see it' and support was half-arsed.

DS1 did not pass under the radar and became more and more obvious as time passed but he did not trigger the teacher's alarms because he blended into the wallpaper - well duh, he is practically selectively mute. The only thing that pissed off the teachers was his passivity and that led to them branding him lazy, lacking work ethic, awkward etc.

Have the teachers shared any concerns with you or do they insist that all is well? How will supporting DD make life easier for them?

Handywoman Wed 20-Mar-13 18:06:56

Teachers have shared concerns re in attention (for years, since nursery really) anxiety, poor reading comprehension and inability to reflect independently (since Y3).

Actually Bumped into SENCo, she surprised me, and has offered to ring Paed in my behalf to get something more concrete in writing from her. She said she's had similar probs with another child bring dx'd with ADHD in person but nothing written in black & white.

ilikemysleep Wed 20-Mar-13 18:15:01

Does your authority have school effectiveness officers? This is the kind of thing they can lean on schools about...this senco is quite simply wrong in terms of not doing an IEP as you know, pending diagnosis.

IEP written by this SENCO would likely not be worth the paper its printed on. This SENCO is failing your child.

Put the wind up their sails and make a personal application for a statement from your LEA.

Use IPSEA's website www.ipsea.org.uk

auntevil Wed 20-Mar-13 19:28:13

I must admit Handywoman, I went the other route to get results.
I already had a dx, but after further assessments the paed wrote a letter that did not represent what had been said at the time.
I wrote a letter of complaint to the paed and ccd it to PALS who ccd it to the CEO. My letter went through issue by issue and what was said, what was omitted totally, and what questions hadn't been dealt with at all.
Upshot, I had a meeting with paed who answered all my questions and agreed to write a letter to cover every aspect I needed for education purposes.
It seems that your school does not want to act unless they have 'other professional' advice. They should be able to access good advice, but if they are so reluctant, I would be tempted to get the info they seem to crave (then use it as a stick to beat them with)

coff33pot Wed 20-Mar-13 20:59:07

Definitely gather the info on the schools behalf and also email them as and when you are getting it with "attachments" as well as the real thing by hand (paper trail grin)

I was informed in my area that there had to be at least 4 in agreement in a multi team for a dx to be confirmed? perhaps this is what your pead is forseeing? ie we had a salt, ot, pead and clinical psych agree DS dx.

Could your pead just be getting things ready in advance of the ADOS to speed things up?

Of course I may well be wrong.

Usually a member of the multi team also visit the school to assess. EP is also part of the multi team down here x

We had them advise the school by sending in an autism support worker requesting to assume DS did have ASD and put strategies in place in the meantime whilst waiting.

Maybe you could ask the pead to arrange that?

Handywoman Thu 21-Mar-13 07:57:32

Paed is sending SaLT to observe dd2 as part of the MDT assessment. Because it forms part of the diagnostic assessment it's not until next year, potentially.

All this just seems so unnecessary. She has poor written skills, this Paed. Seems to be a weakness. She could have easily written 'dd2' demonstrates behaviour that strongly suggests blah blah blah'. But instead the letter is a bit of a muddle with 'I think the way forward is CDAC' as both first and last sentence of same paragraph. Not great. We'll see if SENCO can get her to write something more useful. More waiting......

Handywoman Thu 21-Mar-13 07:59:11

We have parents eve next week and Ill be expecting IEP to be set up and an explanation of why dd2 has not been reading with SENCo as planned.

Handywoman Thu 21-Mar-13 14:09:10

Okaaaaaaaay, so I remembered this morning that...... in this same clinic appt Paed stated that school were to monitor dd2's inattentiveness and keep the idea of medicating her under review. I was to call her if prescription was thought necessary. Did Paed mention this plan in the crappy letter? No!

So this has moved me to think 'bollox to this.....' <tiger mum moment> I have now written to Paed..... I have thanked her for clarifying the issues during the appt, reiterating what she has put in the letter and adding in what was said at the clinic appt but omitted (about dd2's unusual understanding and use of language/rigid outlook/ASD looks very likely). I have also added in that this child also has hx of severe language delay, sensory issues and has had 2x referrals to CDC and now would it be poss now with all this info to have a working diagnosis to enable all avenues of support to be open (e.g. Autism Advisory) with a view to preventing newly emerging anxiety issues becoming embedded? I have asked Paed to put in writing the plan she spoke of for school to monitor attention so that the school can put in place methods (IEP) to monitor to see if medication is required. So I have either nailed this or f*cked everything up....... time will tell (....probably quite a lot of time....). I can't believe I have just written a letter to the Paed telling her how to write a letter. I hope I have written it politely enough (I have tried really hard!) and not messed up.

PolterGoose Thu 21-Mar-13 14:32:19

Handy sounds perfect. Good luck thanks

auntevil Thu 21-Mar-13 17:09:16

I don't think the paed will mind.
Sometimes I think that the notes from the meeting are written well after the meeting, and although they said things at the meeting, it didn't make it to the notes.
And if the paed gets the hump? ask for a second opinion grin DS1 and 2 have had 2 paeds, and if I decide to go for a dx with DS3, then I'll ask not to be referred back to his previous paed.
Remember their hypocratic oath means that they must take all actions to preserve life - in this instance hers grin

Handywoman Thu 21-Mar-13 17:26:14

hahahahahahahahahahahahaha auntevil <snorts and chokes on tea coming through nose> [big grin] thank you!

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