Running away from the other boards...

[debs40]

...and hiding here.

I am supposed to be working but on this Easter morning, full of the joys of not being at bloody school, I've got myself in to a right battle of something stupid on the Primary Ed board and have the weight of teacherdom turn on me.

I should have known better than to venture into the outside world of mumsnet with the lovely 'normal' NT kids all getting 3s for the SATS etc etc

All my pent up angst about school came gushing out as I sat here angrily typing and crying .

Silly mare.

But on a serious note. The more I wrote about school, the more I realised what a bunch of sh**ts they'd been all year and how many battles await me when I return.

Do you ever feel you are losing the plot? I make such a fuss about everything now, I seriously don't always know whether I amm doing the right thing. Is DS happy where he is? Am I making too much of everything? How can a 7 year old with SCD be relied on to tell me either way?

Then I carry him back from a walk yesterday or hold his little putty like hand and wonder how if he ever remains upright through a school day without all the other stuff

Are there better schools out there? Someone on Primary Ed posted about one in Dorset which looked lovely - SEN policies and DDA statements on their website! Not alot to ask

Sorry, getting incoherent now.

Debs40, I'm really sorry you're having such a rubbish time with your son's school and wanted to reassure you that, although few schools are perfect, there are many out there who will make much more of an effort than appears to be being made by your DS's school.

I'm not a parent of a child with SN but am a mainstream teacher who started off life at Treehouse (ABA school) and have spent all my career teaching in mainstream inner-London schools where I've encountered lots of children with ASD and ADHD in particular but also children who are completely blind, those with ODD and plenty with EBD. I've been a SENCo and was responsible for behaviour & attendance at my last school so I quite often lurk on here to find out more about what I could be doing better but rarely post as I'm no expert and know that those of you who live with children with SN are much more knowledgable than me.

What I would say is that your son's school is being incredibly naive; there shouldn't be any reasons that prevent him from having a break and I'd expect the majority of teachers to recognise this in a child whether or not an OT had been involved. All the classes I've taught and teachers I've worked with have been very clear with their classes that different children have different needs; some need to sit near the front because it helps them concentrate, some need to go to the loo more often, others need to take a break... it's rarely problematic. IEPs shouldn't be so awful as to require re-writing; I would never write one without a parent's input (unless the parent didn't want to be involved then I'd just get on with it) and would ask them if they had specific targets/goals in mind because surely school is about being equipped with the skills and knowledge to be successful outside of school?! Children with SN have never been excluded from the many school trips we've done (all by public transport) because we make sure that we draft in extra adults/bring along specific food/plan in down-time/use social stories or simply do whatever it takes to ensure that all children can take part. I've written PSPs (pastoral support plans) that include lego time, naps, running around the site and would expect most with-it teachers would do the same.

I realise that not all teachers have the confidence to go against the grain and suspect that may be some of what you're coming up against - a confident teacher should be able to ask a parent about a child's needs without fearing that it makes him/her look unprofessional but, as has already been suggested, a lack of such confidence may make the teachers seem arrogant and downright useless! I hope you make some headway with your son's school but also wanted to say that if the school isn't prepared/capable of making itself the right school for him then it may well be better to look elsewhere; I've seen children struggle in one school (think repeated fixed-term exclusions) and thrive in another simply because children's needs are considered differently and taken account of far more imaginatively.

Good luck.

Bloody good post SMacK

Just a suggestion step one might be tht time to send the letter formerley requesting a assement

Not the school as theres no right to appeal at least will get the ball rolling while you look into private options for dx/input

SE13 thanks for that. I really appreciate your input.

I get mixed up about this because part of me feels that, in a different environment, none of this would be so much of a hassle. Sometimes I get silly and hate school, but then sometimes I thing that they don't know what they're doing so they are not being malicious. I know I should not be doing all the running though as it is too stressful and pointless.

Either way - not good for DS.

However, he has such a good little group of supportive pals there that it is not straightforward. For a possible little Aspie, this is a big deal. He was at another school before for reception and did not have this so I know the difference.

If I moved him again, it would have to be right but there are no guarantees of that.

Also,we are always considering moving out of the area so I do go round in circles. I know. Not good.

Part of me does actually feel that, with appropriate support in a more switched on school, he would be fine and that he doesn't need a statement, just a more supportive environment.

But then part of me thinks that, although he is doing ok at school at present, things will change as the curriculum becomes more demanding in a way I can't predict.

So as a pathway forward, I am going to look at private referrals to get a diagnosis and an Ed Psych's opinion and I am going to talk to the head about better communication and about basic suggestions like breaks and inclusion.

I want to apply for an SA knowing that I have a case to take to tribunal, not hoping that a LA paid Ed psych will agree with me.

Does that make sense??

The thing is-if you apply for a stat assess they can take up to 6 weeks to decide yes or no-then if no you appeal to tribunal- it can take 4 months to get a tribunal date-all evidence has to be into the tribunal one month before this date. So you actually have time while going through this process to gather the evidence you want and the LEA have timescales that they have to adhere to so they have to get all their assessments organised. So you have a clear 5 months to get all this info in at least. I am going to tribunal at the end of this month for my son who is similar to yours. I do have a decent private OT report and SaLT report and although the EP has assessed my son she did not write her report in time for the LEA to submit (apparently). Even if we don't win the Tribunal my son is now being assessed by CAMHs we have a key person to communicate with and we will have a result in regard to diagnosis in 3/4 months time, we can apply again then. In an ideal world it would be great to get on with the teachers/head well but they are not seeing the situation from our view as parents of our children. You need to have some direction and control with this debs, you can't change the way the school works but you can push for a way forward for your son in other ways. If you wait and have to goto tribunal thats yet another year gone perhaps longer, until your son gets the support he needs, instead of a possible 6-7 months if you act now.

Thanks wasuup. I totally take your point. I can see that parents have to drive this and that you don't have to have all your evidence together before you apply for an SA.

I am going to speak to the Dyscovery Centre to see how quickly they can see us and contact the two Ed Psychs recommended by SM and Wet

Where would you go for a private ASD assessment/dx? I've heard Daphne Keen's name mentioned. None of the tertiary centres will take private referrals

If you email NAS your postcode they will send you a list or go to their services section of the website where they have some listed.
Are you on the list for CAMHs, have you had their initial assessment yet?

DK gave us our private dx. I was a bit disappointed with her but it was probably more to do with me than her. She asked lots of questions and then asked me what I thought and what I wanted a dx for an my next steps. She basically said, yep he has asd, yep that's a sensible reason for getting a dx, and yep your next steps plan is appropriate. So she didn't add anything really, accept a formal dx of course but when you already KNOW it's a bit unsatisfactory. Still the value was having the bit of paper to prove to the LA that you know.

The key thing about DK really is that she is a respected NHS Paed who does private clinics on top, so neither the NHS nor LA are likely to try and refute the dx.

You need to pick you 'experts' strategically. I think your idea of a 'case' is spot on.

Sorry, didn't mean to be dismissive of DK. I think the point is that by the time we got to her, we already knew what DS' problems were and how to help him but the most significant barrier to starting the process for getting the help was a formal dx. I suppose she did also give me a lot of confidence that I knew what I was doing and also that the LA were being ridiculous (I know already of course but it is nice to hear someone knowledgaby agree with you.)

DK is well respected and as I have said before though you maybe able to find a respected NHS paed/consultant psych who works at your local private hospital one session a week. You can ask your GP to refer you to their clinic there.

I can also recommend DK. However, it may be worth looking locally first in case you need to do follow-up visits.

There is also a list of practitioners able to dx here from the Autism London website - mostly SE based. Do research any options thoroughly - their qualifications/experience need to stand up to scrutiny. I'm sure an organisation like SOS SEN will be able to make recommendations.

When thinking about assessments and tribunal timings, you need to be aware that reports like EP/SALT etc need to be ideally less than six months old. So that's a good argument for pursuing SA and EP assessments now, otherwise you could find yourself having to pay for updated reports closer to the time.

Thanks guys.

Wasuup, NAS have only advised local hospital where we are on the waiting list having been through several layers of 'gatekeeping'to get there. We have been on the official list since August with no sign of an ADOS appointment imminent. The service is in chaos as its management has now been taken over by another Trust so I will stay on the list there but need to progress things elsewhere.

I can see no private paed/psychologist locally that does it. Hospitals in other parts of Wilts do ASD assessments but have closed lists to 'outsiders'.

DK sounded good although I did wonder how she manages a dx within an hour-two hours of appointments without any input from other services. I suppose that is not a problem if you already have reports.

I am going to ask our OT when she is likely to have completed her assessments and can deliver a report. We see her after the Easter hols but she has been assessing since December. She has confirmed DCD but I think she is struggling with practical suggestions for sensory issues as she wants to make sure she's tried things out so school will take her seriously.

I like the look of the Dyscovery Centre and I think they have real expertise in DCD/dyspraxia. Not so sure that they have that in ASD though.

Thanks again guys. Much appreciated. Have got my lawyer hat on now I'm building my case so I'm much happier

I also found the absence of a multi-disciplinary approach to dx a bit unsatsifactory with DK, and so insisted that it was a 2nd opinion that just came first and that I still expected an HNS one.

What I learned from the multi-disciplinary approach was that it was a bit of a farce anyway. People who I KNOW hardly have any knowledge of DS from the LA were 'pretending' they did and agreeing that he was acting 'typically' during the assessment. I realised then that DK simply had more respect for parental accounts than the LA. Still do go ahead with the LA multi one though. They will not challenge a dx by DK, but add 'evidence' to your case.

I did locate someone locally who will do an assessment privately. She was recommended by Hants Autistic Society. She works in a local hospital team but I can't find out anything about her specific expertise. She doesn't appear to be a consultant.

That's as far as I've got locally!

debs, I have used a specialist education solicitor since getting refused for SA. It's been an expensive path (and as a single parent I can ill afford it) but she has instructed most of my experts and I have found her absolutely essential for my appeal.

Before I went for legal help, I'd made quite a few wrong turnings, went for assessments which weren't quite suitable for DS and overall, I'd say I've saved an enormous amount of time, money and stress in doing things this way. They use a pool of experts and knew from the background of my case and our aims, who was the best one to assess DS. They could also get experts to assess at fairly short notice - experts often get booked months in advance and I certainly wouldn't have managed to be as efficient or effective.

It's something worth thinking about if it's financially feasible, perhaps not now but maybe if SA gets refused. In your case, as a lawyer, I expect you could do a lot of the paperwork yourself and thereby cut some of the cost? I was told that even very experienced criminal lawyers were using education specialists to deal with their cases as the law is so complex.

Debs40 - I so empathise with you. Iam in exactly the same position.

I feel like the school don't believe anything i say (despite reports from my DDs paeds. I feel like i've failed my DD as i haven't pursued the statementing process hard enough on her behalf. Like you I want her properly assessed to find out what her real educational needs are but ed psyche refused to assess despite request from paed.

I am at rock bottom and can't face her current school any longer. Hence we're moving to get her into a school that seems to want her (we'll also be in an area with an epilepsy nurse (we don't haveone here). My problem is that i feel that even if she was assessed here, without an epilepsy nurse, DDs very real issues would be dismissed.

Just wanted to let you know you're not alone. When we've moved, i'm going to fight for DD's statement. Good luck!

My friend knows DK and DK is astounded by the number of children that she is seeing that she can see have ASD as soon as they walk through her door and is concerned about the present diagnostic system.

"...although I did wonder how she manages a dx within an hour-two hours of appointments without any input from other services. I suppose that is not a problem if you already have reports."

Debs A 'rapid' dx is not unusual. It's just the NHS tend to drag it out for months / years while they seek the advice of school etc who wouldn't know an ASD if they tripped over one.

Read Tony Attwood's book and you'll see he states it can be done in a couple of hours.

I spot 'em everywhere now I'm tuned into them

debs

The NAS list of ASD diagnosticians for children www.autismdirectory.org.uk

Thanks Wet...I know what you mean!

just a very small suggestion

DK sent me a questionnaire for school to fill out, a questionnaire for me and I also had a private EP assessment, so it wasn't just based on the 2 hrs. EP report was from someone with no ASD knowledge - hadn't suspected it myself at that point so didn't look for specialist - who said behaviour was due to lack of father figure! Hence my advice about getting the right professionals involved, independent or not.