How can things get any worse? Sa refused now private slt report is in

[2boysnamedR]

It says he is the bottom 1% in his private report but the lea refusal says he is making good progress in this area! Well if your the 1% then surely there is no way to get any worse! When would they not be pleased with progress!

I got the refusal letter sat but the private report came in today. I guess there's no point in sending this to the lea as it will only count for tribunal.

This week has really brought things to a head. Ds almost killed the baby via his inability to recognise danger, he gets refused sa because the lea said the school report was very positive. I got the schools report, what it really said was ds is failing in every aspect of learning and life. It painted him very very VERY badly. Then talking to someone last night it seems he really might have asd and dyspraxia but no dx and no assessment from school. Then this report which was the worse ever.

I'm winded, I am at crisis with no help. I hope this a tipping point to a dx. I can't carry on like this. I am fighting so hard. Inside a thick concrete block. All I doing is smashing myself up, I can't get out. I can make myself heard. I really can not cope. When will someone listen?

[claw2]

nature

[claw2]

A statement is based on needs and in order to get a statement you really have to focus on lack of adequate progress, regardless of dx or no dx. Barriers to effective and adequate learning and education, whether that be academically, socially, sensory, emotionally etc.

Dx is identifying the natural or cause of these needs.

[claw2]

2boys, my ds has a 'classic' autism dx, not Asperger's or HFA, just a plain old autism dx. It took us 3 years to get a dx and I was told by a pead 'don't let anyone tell you your ds has autism, he is too bright'. If you met ds, you would probably just regard him as a bit 'quirky'. However he has many difficulties, which are obviously well hidden to people who don't know him well.

My ds received his dx aged 5 and half and a statement after 4 years later after 4 years of fighting. The two don't necessarily go hand in hand.

I think you need to think of the 2 as completely separate.

[2boysnamedR]

Not that this will stop me trying. It's just messing with my head. Making me doubt my friends :0(

[2boysnamedR]

God I hope we pass the tribunal. The school said today they must do all they can as fast as they can to get more evidence. Now the school are on side I feel a bit more positive. Dh is not coping at all. I think he has hidden a lot of denial from me? Or maybe it's just all too much. I know how he feels. A friend who's son has autism told me from the start to let this go. Her son is supposed to have full blown classic autism but now I am even doubting her. He has no statement but he has that dx. My sons clearly not classic autism or it would have been dx by now surely? So if has no statement what realistic chance does my son stand?

[MariaNoMoreLurking]

So 2boys, do not fret. This is shit but is normal.

Tribunals aren't 100% fair but compared to the wilful, deliberate, institutionalised child neglect that passes for LA procedures, even a relatively rubbish tribunal hearing looks like a shining beacon of reasonableness and good practice.

[StarlightMcKenzie]

Whaaaaaat?

[MariaNoMoreLurking]

Starlight, it's not just the hidden disabilities any more.
Children with undeniable disabilities, with full-time statemented 1-1, or maybe already at special school.

If they're away for more than 2 weeks (bereavement, say) they are routinely getting their place pulled. And then told that they'll have to reapply for SA, and process will take the usual 26w. Meanwhile to take their chances at finding a mainstream that'll accept an in-year admission.

You couldn't make it up and if you did, no-one would believe it

[StarlightMcKenzie]

And, look at it like this. You need to learn the system, so better you learn it now while he is young as you'll be in it for years. After you have seen one tribunal through, you are both unafraid of the system, used to it and competent at navigating it. This is all very useful for developing skills and experience for coming years.

[StarlightMcKenzie]

2boys, This probably feels scary to you, as well as unbelievable, frustrating, infuriating and unfair.

But you have to understand that this is the NORMAL path to provision for many parents of children with the developmental or 'hidden' disabilities (by normal I don't mean reasonable, or even legal for that matter).

You can hope these people see the error of their ways, are mistaken, are confused etc. but it happens ime enough for none of this to be true.

It is just the way it is all done these days and you need to realise it with a sigh and get on with the next bit without getting angry.

[StarlightMcKenzie]

You don't have 8 weeks. That is a maximum. I would do it ASAP, as every week is a week of delay.

You don't need loads of new evidence to lodge an appeal. You have plenty now and you can keep submitting up to a month before the tribunal date and usually even on the day if you need to.

[2boysnamedR]

Thank you Maria x your support means so much I can't tell you. All this fighting the system while being winded by seeing things written in black and white confirming my worse fears.

Whoops my finger slipped on the send button to the lea so that's done.

Private slt report emailed to school suggesting it might be interesting read.

Forms printed for sendist

File this as worse months of my life, dust off and get on.

I could so kick the cr@p out if anything right down like the bin, my washing pile. But that anger is also being filed away for a later date. The hardest days are yet to come. But I will be standing after that.

[MariaNoMoreLurking]

I am at crisis with no help
No you're not. You have us

[MariaNoMoreLurking]

phone my hv and see what she is doing to prevent my baby being in this situation
Don't worry (yet) . You'll know everything there is to know, the LA will be scared of crossing you and you'll have neurodisability paed to help you with the baby. And maybe, fingers crossed, the problems will not be the same.

[MariaNoMoreLurking]

schools report, what it really said was ds is failing in every aspect of learning and life. It painted him very very VERY badly

It says he is the bottom 1% in his private report

This hits you in the stomach like a punch. You need a few days to sit & cry about not being wrong when you say there are big problems. Then another day to cry about the sheer unfairness and wrongness of the LA trying to take you for a fool, and deny your dc the help needed.

Then you'll apply the school report to one hand, and the SLT to the other, cos the terrible reports are the perfect boxing gloves to win any SA fight.

[MariaNoMoreLurking]

Wot claw and wet say. Don't put too much thought/effort into liasing with LA/ school. Cut and paste of one of the letters above is fine.

I've seen SA refused even for dc who were obviously (and I really mean obvious, the neighbours, the postman, the playgroup, the doctor's receptionists... everyone knew, bar the LA it seems) going to need a statement naming the local special school.

Usual routine: refuse SA, wait to see if parents appeal, decide how long you can get away with it, wait as long as you dare, then withdraw your opposition to the appeal and start the SA clock ticking.

When ASD is really obvious, and they've already had all the various bits of the multi-disciplinary assessment like SLT, OT etc, sometimes the dr will just diagnose without making you wait for the 'pathway'. Ds's consultant nearly did, but in the end decided someone might try to remove the diagnosis without the ADOS confirming it on videotape (school thought I was making everything up at that stage... I wish!)

If baby is under paed neurodisability, you'll at least have the name of the consultant, and you should know if they're sensible. If the next planned ds1 appt brings no joy, you can ask your GP to write to neurodisability doc 'because I think it's helpful for continuity / all have the same consultant / whatever'. Or a second opinion elsewhere, or as claw says, a complaint to the hospital of paed no 1 about delay in assessing.

[claw2]

I also think SS and SA shouldn't be used in the same sentence.

When applying for SA you would be surprised what the LA try to use against you.

You have your handful with SA request and dxing. Make it your business to find out what criteria they use for dxing and who they use. In my first borough, they referred to specialist ASD SALT, who then prepares report for paed who dx's. Then I moved, next borough used a CDC and a 'multi team' approach compromising of various professionals.

[2boysnamedR]

Just got a letter for the baby who is under peadiatric - neuro disability clinic. What a joke! My elder ds has never seen this team but HE HAS the problem which is why the baby is being investigated!

Social services would never be called in. Ever. As we are coping and ds is " normal". It's all back to that. He wouldn't meet any criteria for ss and I have no idea who to call in or how. Except to have a breakdown list my job and split my family. This is not worth that cost. I feel the system wants to crush me but I will not let it. I need to phone my hv and see what she is doing to prevent my baby being in this situation when he turns 6

[2boysnamedR]

Thanks claw. I guess that's going to be my next step after his pead review next month. I am going to ask her if she is going to dx and if not reffer on to someone who will. If she won't dx or reffer I will escalate. He has everything he needs for the dyspraxia dx. But no asd assessment and it has to be addresses now

[claw2]

2boys, pre-dx we had been pushed from one paed to another, despite having input from OT, SALT, Dietician, eye specialist, incontinence service etc, we were still just having 6 month follow up appointments for 3 years and being referred off in all different directions, with no one taking the lead. We never saw the same paed twice.

I made a complaint to the PCT, within 2 months ds was being assessed by specialist ASD SALT for ASD. We had a dx within 4 months of my complaint.

[nennypops]

Have you had a social services core assessment? DS qualifies as a child in need so they should do one. It might provide some help at home and also evidence for the tribunal.

[2boysnamedR]

Thanks. Been to the gp again this morning about ever getting a dx. Cahms will only see kids for things adults get sectioned for or severe depression. Its normal for six years to only eat bread, cheese, bannas and yogurt. its normal for six year olds to wet the bed, to struggle at school. My pead can dx asd - well I wish after four years she might want to test him!!

I am lodging my appeal this morning and then writing to his case worker with the private report. Then I am going to scream...

So STILL getting told he will grow out of this. Praise The Lord it's a miracle!!! (Please can he wake up one day ok soooon please? How long must a girl wait? I think till he's 95 where he might grow out of it?)

Aaaaarrrrggggghhhhh!!!!!!!!!!!whywantanylistenlistentomeeeeeee!!!!!!

[bochead]

Just appeal, they may not have even read your initial application as some LA's have blanket policy's to refuse ALL requests at the first attempt.

Others are a bit smarter & refuse applications from certain categories of parents, those with foreign surnames, postcodes that indicate they live on social housing estates, lone parents etc. (In other words those parents they think will go away quitely!).

Don't over think or analyse it, just do it. In all correspondence mention the key words "duty of care" (covers social & safety issues) and "unable to access the national curriculum" ad nauseum.

A statement is based on NEED, not diagnosis. I got one without the diagnosis. It makes it harder, but not impossible.

Don't get despondent, just bear in mind at all times that it is a marathon, not a sprint.

[KOKOagainandagain]

When DS1 was refused SA the first time, an LA bod told me that if there was new evidence I could bring this under the initial application and not have to wait 6 months to apply again. You can do this whether or not you have given them the contact details of the assessor in your application.

The blanket policies relating to 1st-2nd percentile are annoying when DC are assessed on the 4th but can work to your advantage in that the application may meet the illegal criteria of severity. The whole point of refusing SA is so that assessments that reveal these scores are never made. If you don't assess, you don't find the problem or have to commit any resources to fixing it.

The only way to refute the findings of the assessment would be to carry out further assessment - which is why you are requesting SA.

[claw2]

In fact just knock up a 'im disappointed' letter very quickly, don't waste too much time or energy, same as lodging your appeal, just get it lodged, worry about details after.

They probably wont take too much notice until they see you have lodged an appeal. That's not to say its not worth a try.