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.

LeonieDelt, it's perfectly fine to slag off teachers who aren't doing their jobs properly and won't listen to help, guidance and directions from more experienced people. And by that I mean parents.

Goblin...as a teacher and fellow comrade in arms what is your take on the best approach with DS's school.

I listed lots of the problems yesterday. I think we have moved away from saying that he is 'just like any other child' or even that he is 'fine' but I think what they struggle with is what they need to do.

For example, he gets very tired (he is very floppy and bendy) and there have been suggestions that he takes breaks to stop him getting so stressed by the end of the day. The teachers say 'everyone will want to go and play lego if we let him'. How do you get around those attitudes?

I can see where they come from. A lack of confidence that they know this is the right thing to do so they can treat DS differently. But we have a SENCO who thinks he knows about ASD ('I worked in a school with autistic children once') and a head who scares everyone - not me I have to say. Result- nothing gets done.

I have found the head to be pretty straight but do I run to her with every little thing?

For example, should I go to her to see what the school can do about including DS on the trip next week?

Leonie, thats the bit that really gets to me 'even when faced with the facts' they just do not want to understand. I would have much more respect for them if they said they didnt understand, rather than trying to hide the fact they dont.

Goblin, the problem is, it is a vicious circle. School dont understand, so they get in outside agencies. When outside agencies come in, because the school dont understand, they state he is doing fine, so outside agencies cant make any real recommendations.

Leonie, because helping us would mean spending some of their special need budget on the say so of a parent!

A bit like Debs example of 'all the children would want to play with Lego, if they let ds'. All the SEN parents would want more help, if we give it to you, so we have to be told official by experts!

Even when told by experts, they still think they know best and base what help they give on their opinions!

He doesn't have a dx yet, keep working on hassling people until you've got one.

"ASD outreach go in later this month but don't speak to parents which is a bit of a worry as when the ASD psych went in the teacher told her DS was fine hmm - even school were a bit perplexed by that."

You need to write to the ASD team in advance, listing your concerns point by point and saying that the teacher appears unaware of the severity of the impact, and the wide range of his needs. Not in an accusatory manner (that comes next) but in a heads-up to the professionals as to what to look for, and what questions they should ask.
Does he have an IEP, is he SA+?

The phrase for the trip you need is 'Reasonable accommodation' When my son went on a 3 day residential geography field trip the school did 2 risk assessments. One for everything, and then his own personal one. They emailed it to me and asked for recommendations to improve it. The trip was fine.
Again, have a meeting with the head, saying that as a valuable experience that is part of the curriculum you want your son to be included, he is entitled to access it.. However, for this to be successful, there are some specifics that need to be addressed. Get your list out. make notes about what the head says and agrees. Make sure you are both clear about it.
Then follow the meeting up with a letter, setting out all the details that you discussed and the resolutions.
If he says it's too much bother, you have another piece of ammunition for your case.

Thanks. It is just the lunchtime adjustment really for the trip so I was going to ask that they either ask in advance what it is to see if there is something he will eat or whether he can bring his own food or eat somewhere else. It's a Sikh school and the teacher says it is considered impolite for visitors to bring their own food. But I'm sure that the Sikh school wouldn't mind with issues like this.

DS is on SA+ with an IEP - I wrote the targets for it as the school's were a bit poo. Not sure that they are actually using them though.

I know when the ASD outreach woman is going in and I have asked for 5 minutes when she does but they don't seem to be particularly interested in talking to parents either!

Thanks

Leonie, oh and you have the added bonus of the schools lack of understanding making you look like a liar!

Because ds will not ask for help when he soils himself in school = it doesnt happen.

I have applied for SA and the school are stating to the LA that ds doesnt need one. But they are finally starting to trip themselves up. For example they reported to the LA that 'he dresses himself independently for PE', but in their IEP one of the concerns is that he is very slow getting changed for PE and he struggles and needs help!

Debs, ASD Outreach went into ds's school last month. I sent them copies of all reports (school hadnt passed these on) and a covering letter stating my concerns.

I also asked that she phone me after her visit.

Debs - I've emailed you details of the Chartered Educational Psychologist.

Debs40

To treat people equally is to treat them differently.

That is your answer to the lego thing.

My Dad just returned from a NAS Help day where they apparently told him that parents need to TELL the school how to adjust for the child's needs, and that all children on the spectrum need a low-stimulus retreat area that they can access when they need to. Apparently we need to just tell them

Mary Roberts (or Robertson) is an EP who has been on dx training and I saw her speak at an SEN SOS thingy. If you can wait (she is in high demand) or you are lucky enough to get a cancellation you will have fantastic ammunition in her. She is strategic too legally minded.

I know you are trying to get the timings thing right but this school and these teachers are going to have forgotten about your child in 10 years time, whilst you are going to be living with the outfall of their mistakes. It is true that you should try to work with these people, but not to the detriment of your child's education and I think you can very safely say now that things can't be any worse. Your child is being failed and the school think you are OTT. You need to move now to your child being helped and the school hating you.

Is part of your reason for holding back fear, or lack of confidence? Are you not certain that you have enough information or that you know what you are doing?

We have spoken before that you like things to be done properly. You expect professionals to be professional, therapists to deliver therapy and this is how you want things to happen.

Many of us here have long given up on professionals being professional and stamp our feet to instigate change. We have given up the idea of therapist doing therapy, so we threaten them for copies of their resources so that we can deliver it ourselves. We have given up the hope that an EP will spend long enough with our children to have any understanding of their need and make sensible recommendations and so we make sacrafices and pay a private one. We have given up believing that teachers who tell us they have lots of experience of SN actually have. We have learned that these experts know very little compared to us about our children and that the system is extremely flawed. We have come to believe only in ourselves and have become cynical bulldozers but very few of us have got there on a direct path, starting out that way. Most of us have tried all the other paths first.

Be a bulldozer, be a polite one, acknowledge people gratefully who do help, but don't EVER believe they will.

SM - thanks for your post. It really struck a chord with me. I suppose my concerns have been all those things you mention - fear of not knowing what I'm doing, of feeling constantly undermined so I questiona my own judgment and of expecting some magical report produced by the crap head bunch of unprofessionals I am dealing with will change things.

I think a private dx is the way to go. I can see that I will only end up here in any event but maybe would have wasted two years pursuing things 'their' way first.

Thanks for your comments they are much appreciated.

I need to re-take control!!

Debs40

I don't know if your line of work or your brain are chanelled towards more black and white processes. I would hate to presume. But I think you might be in danger of holding out for the impossible (not because you have high expectations but simply because you have reasonable ones).

My experience is that there really is nothing reasonable about this whole process. People with the most money appear to get the most respite regardless of need. People with the sympathetic GP's get out of county referrals, - again regardless of need. OT is given only in places where it is offered, regardless of need. This is illogical but it is the way it appears to be, at least to me.

Given that the system is like this I cannot fathom how else to go about getting my child's needs met but to make my own judgement of his needs and then deliberately seek out people who will confirm this (or not, of course - if I trust the source I am prepared to be proved wrong) with their qualifications and credibility.

I have to believe that however wrong I might get things, it HAS to instigate a situation that is a vast improvement on the one ds is in.

I took a look at the thread you mentioned and you are clearly wasting valuable energy banging your head against this particular brick wall. If you keep it up much longer you are going to be out of steam. You need to have a rest and change tack. If you haven't done so already get out your diary and make a list of things that have happened over the last year and approx or exact dates, plus gather documents etc.

People haven't been suggesting you go for a SA because they are bolshy-statement-hungry MNers, but because it is the only surefire way you have of shaking up the professinals involved, to make them pay attention and to get you some decent assessment. Statement or not, in the long-run it will get 'something' happening.

Also, whilst I know some of those teachers over on the other thread suggested you wouldn't get a statement I beg to differ. Appart from anything else, unfortunately getting a statement appears to have a lot to do with a sense of entitlement. You need to get yourself into an entitlement frame of mind and no longer care that this might make you look 'pushy'. Don't tell anyone in real life about it if it makes you feel better, and absolutely don't listen to other parents of children with SN. Comparing notes about what each other's children are getting is taboo in real life I have learned, and irrelevant anyway as everyone is different.

Phew, - sorry. I hope I'm not being too bossy. Don't be afraid of failure. The worst that can happen when you apply for a SA is that they turn you down, where you will have three choices 1)appeal, in which case only deluded parents will not win, i.e. those that feel their child is secretly G&T and should be entitled to a full-time 1:1 on that basis 2)don't appeal but submit another request as there is no time period at this stage, 3)wait for a bit as things might have improved as a result.

Your school thread just made me very very sad and angry because it is not your fault that this is your everyday reality and IT SHOULDN'T BE.

Debs40 totally get your point about wanting to be able to work with school and feel your child is supported there.

Just wanted to pop in and say how useful i've found reading all the posts on this thread.

We're starting the statementing process (ds age 4 has gdd and sensory issues,poss asd poss dyspraxia). All agree needs support but LA prefer to provide provision through packages not statements.

School did write to request but didn't send me copy of the letter so don't know if letter said "this child must have a statement" or "parents think child must have statement but he'd prob be fine on package" -

Also reading threads is great distraction from getting on and writing the parental report!

MS Can you ask the school for a copy on the grounds that you want to support their application so it would be helpful to see what they have written?

Smack - good idea, just need to wait till after school hols. might give the lea statementing people a ring and see if they will send me a copy. Ta

SM...it's not so much black and white processes for me and law..law is rarely black and white. It's more about evidence and being able to prove your case.

I don't tend to assert things unless I'm thoroughly prepared and have put together a 'good case'. I may know as a lawyer that I have one, but proving it is often another matter. But it's not just this, I am like this in most things in life - what fun! Prove it is my motto

On that basis, your posts and this thread has been illuminating because i realise I have been going to the wrong place for the 'proof'. Yes, you need to jump through the LA hoops etc, but the 'best evidence' will not be from them, but the people you trust and who can give evidence you trust.

This is not to say I think there is a golden report out there with all the answers but that if I am going to beat the system, I will use it my hammering them with blardy good stuff.

I think that way lies the pathway to least stress.

So, in that case, I do feel more in control. This is my case, my son's life and I will get the evidence I need to show them what they need to do.

Sorry if I have offended Debs40. I really shouldn't presume anything about you. Just trying to make sense of your barriers.

I'd just like to say on the basis of your last post that some of the evidence that the school is not meeting your ds' needs will come from them, but it might not be 'presented' by them iyswim, so do keep a diary and documentary evidence from them as well as collect fresh independent stuff.

Hiya....no, no, no, you haven't offended at all. Honestly, you've been really helpful and have prompted me to consider my own hesitancies. That is why really, if I'm going to do this, I want something on my side that it will make it less easy to dismiss me.

The sad fact is that i will probably have to throw money at it to get it.