Feeling frustrated and sad after Paed trip today [sad]

[Peachy]

Took ds3 to his long awaited PAed appt today, we were due a dx.

Unfortunately Paed has decided not to attempt a DX for two years as she is now against labelling young children! there is also a tiny chance that it could be a speech disorder (anyone know about them? I know nothing) that is causing the ASD symptoms. Even though he does DX on cars etc

So he now cannot access the SN units, only SALT unit BUT hneither they nor MS will take a child who is in nappies- nd because he cant tell if he is wet, he will be for the while. We've pulle dhim until Easter, and are discussing with head on Friday. SENCO has tols us LEA won't be awarding fullt iem 1 - 1 though as they dont do that in MS here, he would need to be in SN unit.

'Cept he can't access a SN unit........

Now, have been and lost with ds1, but at elast then I could run to NAS ofor support- here, without a dx, where do we go?

Paeds besta dvie to speed it up? Intensive 1 - 1 with priavte SALT

yes inddedy a student loan covers that

Soory know I'm being a miserable old shite but just getting nowhere, he's 4 in a few weeks and has had nothing- zilch. Fallen through too many agps (Paed who wouldnt refer, SALT post was vacnat etc etc) and now this

[Twiglett]

oh Peachy

don't know what to say .. sounds like such bullshit .. shouldn't she give a tentative diagnosis so that you can access treatment .. rather than pay PC with feckin' labelling issues

I think a strongly worded letter (unemotional) to Paed, head of Paed, MP etc

[gess]

IPSEA.

Have you applied for a statement. They can't make blanket rules like 'a child in ms can't get full time 1:1'. that sounds illegal.

perhaps chat to a lawyer, find out the cost for one letter (to the LEA), and take it from there?

[gess]

BTW I did go to a meeting where I talked to a paed about this issue. She said that she sees quite a few children who don't quite fit the criteria for an ASD dx, but come close, and it's a problem because she can't dx them, but knows that will limit access to services.

Perhaps ask the paed about dxing PDD-NOS if she won't dx autism.

Bibic? They can help get a dx. Or private paed (although they're like goldust; couldn't find one when we needed one).

[Peachy]

Statement is in progress- they ahven't refused yet but it wqs advice from SENCO, we will take to tribunal though if we have to.

Also been told that it is LEA policy not to allow any child to repaet the nursery year- even though that would be by far the best for DS3 and everyone knows that (as he ahs a tendency to regress if any changes- thats how he lost potty training)

[Peachy]

BOBIC saw him alst week, it was them that did the first cars scale- Graham there said he is deffo ASD, although sppech issues amsking some potentials that he cant make us aware of.

children in need apid for bibic for us- so if anyone donated thank you!

[jenk1]

Peachy
you know we had this with DS consultant psych last year, she wouldnt dx DS.
we wrote a very strongly worded letter, advised her that she hadnt followed correct procedure and that as a result our DS had missed out on support and hinted that we would take this further which we would have done.
she backtracked so quick it was unreal and dx,d him with PDD.
when you have had a couple of days to think about this write her a letter and hint very strongly that her decision not to dx your ds is affecting him as you cant get any support, ask her for her comments and tell her that you will take matters further.
Then get onto IPSEA as soon as you can, they will help you write a letter to your LEA, they cannot do this, this is a blanket policy, they cannot deny your ds help based on him being in a ms school.
NHS and LEA are supposed to be independent of each other but sometimes i just wonder, especially when i hear what has happened to your DS and mine.
hugs
jenkx

[mummytosteven]

. Sorry that the lack of diagnosis is completely screwing up the school issue. Hope that Gess suggestions are of use.

[jenk1]

peachy, did your paed see the bibic reports?also, have you put them in your parental evidence for the statement, we included our private psych,s dx in ours.

[Peachy]

I will try IPSEA again (having the usual issues), there is a multi disciplinary meeting in September now and I am going to sk SNAP (a sort of local parental SN eduation thing) to ocme with us, as I am a bit too- erm- what's the word? thrown at the lack of answers and am focussing too ehavily on that, I ama ware of that.

Don't want to upset Paed as she is DS1's Paed and stuck her neck out to help there.

[Peachy]

BIBIC reports will be a fortnight- reports only accepted until friday sadly (though ahve a basic ticksheet that flags up concerns to send off, they won't have any SALt though which is a bit for a kid with his language issues)

[jenk1]

what about asking her as gess says to dx PDD-NOS, cos that should get you some help from LEA side of things?

[jenk1]

Peachy i think you can ask for an extension on reports cos when i got our proposed staetment for DS, the OT report was dated over 10 days late for the deadline as the woman was off on holiday.

[Peachy]

I'll ask about an extension thanks
The Paed won'tr see ds3 for six months, says no point

[Daemara]

Peachy-- I don't know what to say but you deserve big hugs and a nice cup of sweet tea, or something a bit stronger... I can't say I know what its like but I really do feel for your struggles... I hope something can be resolved...I wish I could help.

[mymatemax]

How frustrating
Your not being a miserable old shite!
Why won't any of the nursery's take him in nappies surely that is discrimination ??

DS2 is 4.5 & is starting ms in Sept with nappies, he doesn't have a statement (stupid LEA early years woman)or a firm dx for anything other than his physical disabilities.
I was unsure about approaching NAS but recently contacted our local branch & were happy to help without dx & even though he is preschool & they are really only funded for 5-16 yrs.
No real advice other than give NAS a call.

[coppertop]

So the Paed isn't willing to consider a dx until ds3 is nearly 6????

I thought that schools now have to take children who are still in nappies, because of the disability discrimination laws?

I'm so sorry that you're having to go through all of this.

[gess]

RE nappies. I got this from someone on here, but have written about nappies + the DDA on my website- see here

[Peachy]

Oh thats fab

Apparently the nappies thing is that they (or even a 1 - 1) won't change them, so we'd have to be on call to go in whenever. Now, maybe I'm being awkward but I think having to be called out of Uni class, or having DH woken (he works nights) for a nappy is a bit unfair.

Saw the GP today re DLA and he's backing us so fingers crossed on that one!

Going to call IPSEA and I notice we have a new local helpline about the Nurery thing- DS3 is young anyway (not 4 until 27th July) and apparently blanket policies are illegal so we'll see how that goes!

feeling a little more cheerful today LOL

[gess]

Read my link peachy- that may well be against the DDA. Print out the stuff from Sure Start (on the link) & show them. Glad it was helpful cat- although someone on here linked to it originally!

[Peachy]

That link does seem to suggest doesn't it.....


I will raise that with SENCO and hea don Friday then, thanks

[tibni]

It is getting more usual to have children in nappies at nursery and most establishments now write nappy changes into LSA / TAs contracts. (I have known schools in the past calling parents in however so I think you may have a battle)

As for holding the child back a year - has anyone from LEA commited the blanket policy in writing for you? I would certainly ask them too - might make them think a little. For some children the extra year can make all the difference for a successful transition into school.

[Peachy]

The Nursery ahs kids in nappies (although they won't put them on- DS usually sent home without as he will strip his off, dry when he leaves and wet when he gets here....), the problem is ds3 will be one of the youngest at his school when / if he goes

It was the LEA BAT that said no nappies and no repeat year, I am aware she may being scapegoated as she leaves soon.


Well tomorrow on our mega tour of the service provisions of SE Wales we have SALT- many of you will know how eagerly awaited that is! Will be interesting. Friday is school meeting- Thursday TBA () but DS1 has to meet new teacher that day so will be needed at home no doubt