'We don't like to diagnose / label anymore'

[2boysnamedR]

Sorry me again! Been at this game for years but having the toughest month of my life. I am being told that if my ds has dyspraxia or asd then they don't diagnose these any more. Only a MRI would reveal dyspraxic brain function ( not his symptoms maybe?) is this true?

Why is this so bloody hard? Why is no one on our side?

[TOWIELA]

2boys - I'm not the best person to ask about court = money cos mine has been mega mega bucks (think of a number, double it and then add on a few zeros). For various reasons I decided to do it with full legal representation (solicitor & barrister) and we've been going full pelt for 18 months.

[StarlightMcKenzie]

It's a tribunal not a court. I'd say that the very least you will need is an independent witness. That will be the cost of an assessment/observation and then their attendance on the day.

Tribunal savvy witnesses aren't cheap, however if you are entitled to legal aid most will accept that.

The independent witness you choose will depend on your case but it is USUALLY an EP.

Then you increase your chances from there with other witnesses and legal representation. It also depends on the LA you are up against and whether they themselves are bringing in a barrister/dirty tactician.

[StarlightMcKenzie]

If you lose you don't pay anything except for your own costs. If you win you aren't awarded costs.

[2boysnamedR]

Good on you! I exchange on a house Friday so I can't think about mega bucks. I can think about not drowning at this point. One step at a time. If a ask for a statement, appeal then fail is it like a driving test - you wait a bit then try again?

[StarlightMcKenzie]

Yes. Once you have done it once you are no longer afraid of it.

Angry, stressed perhaps but the fear isn't there. You know what you have to do and you get on and do it.

[2boysnamedR]

Hmm - seriously considering taking a degree in salt. Would be easier and quicker than this poop

[TOWIELA]

The trouble is, everyone say it's not a court (and I fully understand all the official lines about why it's not called 'court'). But there's "evidence", "evidence deadlines", "witnesses", a "judge", an "appellant" (ie you), a "Respondent" (the LA) and you have "barristers". So it looks like a court, tastes like a court. But, no, no, it's a.... Tri-BU-nal! [Said in my best Stephen Fry accent]

Tbh, I don't tell any of my RL friends I'm going to Tribunal, cos they really wouldn't have a clue. So I say that we are going to court. Makes explanations to people who have never been in this position a little bit easier

[moondog]

JM would be helpful to adults. I have a go sometimes and by now my kids are better than me!
It's to do with working memory, which seems to be about holding several different pieces of information in your brain short term and then applying them to work together.
JM not very expensive. I have been very impressed.

[EllenJanesthickerknickers]

2boys, you can apply for statutory assessment for a statement yourself. In fact it's generally better not to wait for the school to do so as you currently get better appeal rights than the school does. The IPSEA website has standard letters you can copy. Many LAs seem to refuse to assess as a first hurdle to try to put parents off and save them money. Determined parents appeal, sometimes the LA caves and assesses. If they don't cave, you need to get back on here and ask for advice. Many posters have experience. Good luck.

[fanjoforthemammaries7850]

Thanks, I will take a look :)

2dogs I hope you get the answers and support you need for your DS soon

[fanjoforthemammaries7850]

Sorry..2boys not 2dogs..you can tell DD has me up in middle of night

[2boysnamedR]

Thank you everyone. I was awake till 2am talking to mate who is a reception teacher. Ds iep has six targets, set in spring, no review as of yet. Three weeks to get one. I emailed the school today cc'ing the world in ( as my hv says nhs and ed will not communicate so its my civil duty) have a letter from school now he does not preform with the level of his peers. Pointed out to school that he was born in oct so should be performing with his April born peers. Asked how they asses his vocab age. Also said this therefore can not tie up with salt saying he is six months delayed and can the school back this with evidence. I hope I have them by the balls now. Conflicting evidence from salt and the school and a crappy iep. I guess that means the school are not meeting his needs? In a way I hope he fails two points on his iep as next level of intervention is a statement if intervention is failing him. This system is a crock of shit

[Trigglesx]

2boys Just a note, in case you are not already doing so, put EVERYTHING in writing - even if you have a phone conversation, put the main/important points of the conversation in a letter and send it to them, saying "just to confirm the points of our telephone conversation of Tuesday, 25th July at 2:15pm..." If they tell you anything, request it in writing - especially this "won't diagnose" nonsense as well as "won't get a statement." The minute you start putting everything (and requesting everything) in writing, it puts them on notice that you're going to be pushing this much harder - sometimes that alone gets results.

For those that have said they were told if the child was not behind or if they were ahead, they would not get statements - that is complete and utter bollocks. DS2 is a 6yo, reading at the level of a 15yo, and he has a statement and attends a SS. He is also well ahead in maths. We fought for a couple years to get the GPs at our surgery to understand and listen that it was obvious he had developmental problems and were put off constantly. We got lucky when he went to reception as he went to a local school that is brilliant with children with SNs - within 3 days of him being in school, we'd had a meeting with the SENCO, organised a referral through school nurse to paediatrician, as well as SALT and OT. This same school pushed immediately for a statement for him as well as (when we were ready for the changeover) helping us to secure him a place in a special school at Yr2.

What saddens (and angers) me the most is that my experience with having such a supportive school should be the NORM, not the exception.

[bjkmummy]

i agree - a supportive school can make all the difference. i would deffo apply yourself for a statement. do not worry about if its refused and appeals etc - that could be a while off yet and they may agree to assess. tribunal sounds scary but we all have been where you are and through support and advice on here got to the other side. i was terrified of tribunal but now looking back it was okay. the LA hope parents dont go through with it. i represented myself - i actually said very little as the case so strong so it was the LA and their witnesses who got the grilling. most LA witnesses dont want to be there either as they are forced to go by the LA. everyone on here held my hand through it all and we won.

[2boysnamedR]

If term ends in four weeks for the summer is this a good a time as any to request my assessment? The school can't gather evidence without my son and therefore a case against me anyway. So I guess if when I do my assessment request I can state 'on the 25th of June when me and dh met with senco and was told we would never get a statement or diagnosis we are going ahead anyway' then I have it in writing they said it and my dh was there?

[Kiriwawa]

I'm right there alongside you 2boys - I'm going to speak to the senco this afternoon about a statement and see if the school will back me up

[2boysnamedR]

Kiri - masses of luck to you. Remember this a marathon not a sprint. They are hoping you will burn out before the finish line. Turn your frustration and upset into anger but then Chanel that anger to fuel you on. I have enough fuel to get to the moon now. Good luck, kick butt

[Kiriwawa]

Thanks 2boys - I'm borrowing some of your anger because I need to fuel the fight.

[2boysnamedR]

Let us know how it goes

[ilikemysleep]

I am trying to keep my professional head on here to the barest minimum, but I wonder if there is some confusion on the senco's part. As in, she is talking rubbish, not actually correctly infomed herself of local policies. She doesn't have any power to diagnose or, probably, make a referral to those that do, and saying dyspraxia is only diagnosed by mri is totally wrong. You nearly always need to see a medical person to be referred to diagnostic team, might be school doctor, school nurse, community pead or gp dependung on your area. Is she definitely not saying that she doesn't have to wait for a diagnosis before offering support? That would be true!

Can I also add, diagnosing doesn't equal spending money. Diagnosis is by the NHS and spending money to support kids is by the LA and at the minute those are totally separate bodies. There is no implication for the NHS in fundung terms if they diagnose your child, or any financial reason why they would not. I appreciate that many people have a crappy service and a big fight trying to get support for their sen kids, but this particular rumour is not true. The LA I work in has no clue at all which children have been referred to asd diagnostic team, the first they hear is when/ if parents give permission for LA to get a copy of the diagnostic report at the end of the diagnostic process. As the two agencies are separate there is no reason for the local authority to be involved in the process There is absolutely no influence at all of the LA on the team, unless the child has already seen an ep and the parent gives permission for the diagnostic team to have a copy of any ep report.

Also hate to disagree over jungle memory and cogmed but whilst both have impressive results for kids getting better at the tasks within the programmes, a recent independent study found very little generalisation into general working memory improvement, unfortunately.

[StarlightMcKenzie]

news.bbc.co.uk/1/hi/uk_politics/7998645.stm

[StarlightMcKenzie]

Ds' multidisciplinary assessment for autism consisted of his SALT (who worked in a school unit), the SENCo of his school, the EP, the SN HV and the Paed, and an additional ASD SALT and the Autism Advisory Teacher came in after the testing and before we got the results to help put together a plan of next steps (which was a pretty meaningless list of woolly stuff).

So there was a huge cross of NHS/LA boundaries.

[bochead]

DS's last SALT report went to the monkey, the monkey's dog, but wasn't sent to me. Any idea why that might be if they are so separate?

My requests for assessment have always been "run by" the school first and their opinion has always carried greater weight than mine in the decision by the NHS whether or not to assess. It's one of the key factors why DS wan't diagnosed till he was 8, despite my first formal request going in at 3.

[ilikemysleep]

Starlight, knew someone would bring that particular case out. Even so there is no suggestion of the la being invloved in the original diagnosis, they very wrongly pressured the psych after the fact. Which is way out of line, but doesn't mean I am lying.

Look, if you want to think I am totally wacked and that the local authority is informed in advance of every child sent to CAMHS in order that they can spend time and effort in every case making sure no diagnosis is forthcoming, you go ahead and believe that.