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SN children

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

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Original poster

Anyone heard this one before?

24 replies

newlife4us · 04/05/2010 14:18

Just heard from senco today that lea won't be assessing DD because her arms and legs work. I'm not joking!

If we weren't about to move to another area where i'm going to start again i'd be here crying, but at least i can laugh at the latest in a long line of excuses.

OP posts:

MoneyNoPockets · 04/05/2010 14:29

OMG.

debs40 · 04/05/2010 14:32

Eh?

MrsYamada · 04/05/2010 14:34

Where the hell do you live? The dark ages? I know you are moving but I think that warrants a complaint.

Al1son · 04/05/2010 14:53

You just have to ask for that one in writing - too good an opportunity to miss!

Original poster

newlife4us · 04/05/2010 15:13

Am going to ask senco for this in writing - it's taken them 6.5 months to come back with this!

If weren't moving would have asked senco what she planned to do when she has letters from paed neurologists and report from developmental review saying DD has significant issues and needs assessment.

Would pursue complaint against lea but for fact am saving energy for new application for assessment and we found out on friday DD now has problem with her liver so waiting to go into GOS for urgent scan.

You would think we lived in the middle ages not in 21st century within commuting distance to london!!!!!!!!

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lou031205 · 04/05/2010 16:03

newlife, DD1's arms & legs work (although a bit wonky), so be encouraged for when you move. Sorry about the liver thing.

Original poster

newlife4us · 04/05/2010 17:42

Thank you lou031205. DD has poor motor planning and hypermobile so arms and legs work but bit unco-ordinated! Can't wait to move.

Do you ever feel like its one step forward and two steps backward? Had just come off phone to new epilepsy nurse on a real high to open letter from doc calling us in re liver.

Sorry to hear about probs your having re your DD's salt and 1:1 etc all at once - must be a nightmare for you. I know a friend of mine had a similar problem losing a SALT and OT - she wrote a letter of complaint (not sure who to but will find out) and got replacements pretty quickly. Good luck with this.

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Katymac · 04/05/2010 17:58

Hi Newlife

I just (about 4pm) got told in writing that DD can't have a statement because of her 'high academic ability'

I am a bit &

Original poster

newlife4us · 04/05/2010 18:12

Katymac - sorry to hear that. Been told that one before aswell - problem is behind epilepsy and drugs my DD is (so we think - well she used to before epilepsy and drugs) exceptionally bright.

In year 1 we were told she needed to be in bottom 10% nationally and she was far from it although way behind her peers at school. The problem is because of lack of support she hasn't progressed and is now so far behind it scares me. (she's now yr3)

Have you contacted IPSEA? Are the school supporting you? Ours isn't which means details of progress are fabricated and considerably inconsistent.

Sounds like something our wonderful lea would say. You're not about 25 miles north of london are you?

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lou031205 · 04/05/2010 18:14

Katymac, you know that is rubbish, right??

Katymac · 04/05/2010 18:17

asking for advise etc here

SanctiMoanyArse · 04/05/2010 18:28

newlife

Have you spoken to the lea?

years ago when we first ahd a dx for ds1 the SENCO passed us a messge that LEA wouldnt assess him

Hmm thought I, surely we'd get a letter at some point in that decision

So we went to the SNAP advice palce and they called LEA. LEA hadn't ever heard of ds1, school hadn't entered him on register; it was all lies. DS1 has a statement and tomorrow teh school asks for extra hours.

Speak to LEA yourself

Piffle · 04/05/2010 18:42

I have a 7yo DD with visual impairment and Noonan Syndrome as well as fine motor and some gross motor issues.
I was told by the paediatric consultant that DD would be statemented prior to reception, no they decided they would not as she was getting along well.
Ditto yr 1 and yr 2
Now halfway through yr 2 and of advanced academic ability but now needing massive amounts of enlarging and assistance to access the curriculum.
So the ed psych calls a pupil review...
Says oh the funding rules have all changed, statements now only apply for "spasticity" or full body mobility issues...

But we can get so many funded hours of help
But were were also told that DD gets around too well, isn't struggling enough and does not need the support...
To say I'm livid is an understatement

lou031205 · 04/05/2010 19:25

Piffle that is....well, frankly, Piffle. LEAs cannot create blanket policies. You can apply for a statutory assessment yourself, you know.

Original poster

newlife4us · 04/05/2010 19:31

SanctiMoanyArse - i do know the school have lied. I called lea myself a couple of weeks ago -they'd never heard of her, but school had also lied to lea about her progress and support.

The ed psyche called me but to say that she wasn't pleasant was a serious understatement. A friend of mine has the support of school and SALTS and OT on side who have disputed ed psyche's original assessment - i have no one. We don't have an epilepsy nurse here - DD's consultants have written but quite understandably they don't have the time to go to DD's school. Am going to do it all myself when we move - but saying that new school seem far more amenable.

Piffle - don't listen to them. I feel so guilty at the time i've wasted on DD's behalf. Thank god for MN etc or i wouldn't have known different - you just don't assume the school and lea are lying to you.

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SanctiMoanyArse · 04/05/2010 19:58

OK what reports do you ahve yourslef newlife? And have you made an ap;llication to assess?

When we got ds1's we knew the schoolw ouldn't be a help (Head didn't beleive in autism) so we went to BIBIC and used theirn paperworrk as the basis for an applciation to assess as it is very comprehensive. HAve you thought of that avenue I wonder?

ouryve · 04/05/2010 20:57

Katymac, high academic ability or not, is she accessing the curriculum at school in accordance with that? That's what matters.

Katymac · 04/05/2010 21:05

ouryve it' not fair to Newlife to hijack her thread - but no she isn't accessing much at all; we are talking about it here or here

Original poster

newlife4us · 04/05/2010 22:07

I have paed reports from gos and local setting out neuro impact of her condition, plus report from community paed following developmental review (jan 2010). Also have a couple of her end of year reports, nursery (which at the school), reception, year 1 and year 3 stating DD not working within yr group. (Year 1 prob most accurate stating that DD could only indicate number of tasks with adult support or working within group.

The problem is her supposed results in SATS last year was 2b. Her reading ability is fantastic and probably achieved higher than level 2, but her writing and comprehension would have brought this right down. I know she seriously struggled with maths and literacy as she came home crying saying she couldn't do them. DD is discalculate and does not yet know number bonds to ten etc but somehow got 2b in maths?! However, a friend was in helping with reading in another class when the SATS were done and saw them take bottom set out into another room - apparently the way the paper was read to them they could not get the answer wrong!

I was about to make the application myself (had a draft letter from ipsea) last October when school suddenly decided DD did have significant issues and completed single service request for assessment (which i agreed and signed.)

As soon as we move am starting application myself and will have epilepsy nurse on side.

Katymac - not a problem - its the exact issue we have with DD - she cannot access the curriculum without support. DD is oblivious to what is going on around her. If she's not fitting, she's post ictal or in her own little world.

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Katymac · 04/05/2010 22:09

I almost have the opposite DD has jumped up 2 yrs doing her work orally rather than written. It is so bizarre

Piffle · 06/05/2010 14:07

I wish it was piffle, this came from the LEA area senco and the Ed psych, plus the visual impairment coordinator told me the whole funding system had changed and now statements were virtually exclusive for very physically disabled children.

fatzak · 06/05/2010 14:16

Will be watching this one newlife! I think that your DD and my DS have a lot in common - he too was very bright before the epilepsy and the drugs kicked it I can't believe that as he started Reception I was worried that they wouldn't be able to stretch him enough and now, like your DD he is especially struggling with numbers(he's in Year 2) He's only been to school for 3 days since Christmas due to hospital stays/ non convulsive status episodes, so goodness know how or when the ed psyc is every going to see him to assess him. He's back in hospital next week to start his keto diet, but after that I'm going to have to start the ball rolling myself to get some support. School say that the LEA have said it'll take up to 6months to try and see about statementing and are meant to be doing a CAF (not entirely sure what that will lead to) but that seems have all gone quiet too!

Mind you, his arms and legs do work so he must be alright then

Ampersand44 · 06/05/2010 21:42

How about this from CAMHS regarding family therapy - it would be fine if only DH and I or I alone went along without any children because it is really about empowering us as parents so 'DS is irrelevant'

Original poster

newlife4us · 09/05/2010 14:00

fatzak. My DD had 5 months off in year 2 with same issues. When she went back school said she'd made 2/3 year progress! I feel for you - when there unwell like that the educational issues seem irrelevant as you merely want them to be well enough to go to school.

DD has had several spells like this. When she's "well" i get back on with trying to get the educational support that she needs, but it doesn't seem to last for long enough.

Is there a seasonal element to your DS having periods like this? DD's GP referred DD to immunologist at GOS in the end - she has other symptoms too - dizziness, swollen glands, lethargy etc. GOS put DD on prophelactic in Sept '09 which has made a massive difference this school year with attendance. She still has a number of seizures daily but not as many and not status. GOS think exposure to viruses in school exacerbating her seizures as she seemed much better during summer months particularly over holidays.

Hope ed psyche goes into assess soon and best of luck with keto diet.

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