I have in my hand a piece of paper...

[inappropriatelyemployed]

Ok, I don't want to rejoice as I feel brutalised but I have an amended statement in my hand with an out of school package on it for DS.

SEVEN months after he left school.

They say they have agreed direct payments too - well we'll see.

But thank you all. Thank you Wet and Agnes and Star and Towie and Senmerrygoround and so many others who have been kind enough to support me - always. I am so sorry if I've missed your name out - I am full of cold.

You are special, special people.

Be kind to yourself IE. The scars run deep with this. Four months on I only just very recently felt that emotionally I'm back to (nearly) "normal" (what ever my "normal" is!). A battle like you've had fundamentally changes who you are. It's the lies, deceit, incompetence and the attack on a small vulnerable child that is the hardest to come to terms with.

Thanks Towie. I couldn't sleep at all last night very weird. But then I had the first afternoon out without DS for as long as I can remember - usually come weekend, I have to work.

It's like I'm starting to remember who I used to be again.

Need to get my work life back to normal! But that is a good thing not a stress, I love work. It makes me feel me.

It is like stepping out of a prison gate and starting to think of what life might be like on the outside. It has been going on for years.

How many people in our situation feel like this? It's like shell-shock (not to trivialise combat stress) but there is a traumatic element to it definitely. Your living at unacceptable high levels of stress all the time.

I think shell shock is a good analogy. Long after you have left the battle field you are still very much affected.

'You're' obviously not 'Your'

Yes, I agree totally with Star and TOWIE about the shell-shock. I definitely feel that I suffer(ed) PTSD and I don't think that's exagerating at all. You feel like a civilian who's been dropped into a war zone and told to start fighting - for your child's future.

I still felt very usettled for a couple of years after my battles were over. I was always expecting victory to be snatched away or for something to go terribly wrong.

And although time does numb the memory of the bad bits that state of enhanced vigilance never really leaves you.

It does make you a very different person.

It's also hard to feel good about a victory like this. You haven't won anything. You've achieved baseline, adequate. You've fought so hard for something very basic that until you began fighting you had assumed was a given as the legislation and published documentation implies.

You won't ever forget what you have seen in your war.

I 'won' an election to become a parent governor. I worked hard on my statement and a little canvassing. My 'victory' has not left me shell shocked. It has left me proud of myself and excited. You cannot possibly feel either of these things with your victory as you weren't fighting FOR something good but against something evil.

Very true Star - I had no feeling whatsoever of 'victory. Not when DS eventually got his suitable provision, not when the LGO ruled in my favour, nor when we won the legal case. As you say, we should'nt have have been put in that situation in the first place so there is no joy in being officially proved that you were right - that your child was being denied his/her right to a suitable education.

The joy I have had since then is in how DS has exploited those new opportunities he gained since he found suitable educational provision. I still remember with terror having a 15 year old who was too ill to attend school, had no suitable placement to go to and who thought his education was over. Terrifying.

You say it so eloquently Star. What you said is 100% the truth. That is why we are so brutalised by this system - all we have achieved is a basic British human right which the vast majority take as a given.

We haven't "won" anything.

That is the reason why I stay on this board - my grown-up DC want me to move on and leave - but I can't, because if I can help just one parent/child in their nightmare and they don't go through half of what I went through, then I'll stay and something good might come out of the evil that was my DS's story.

I am glad I'm not the only one feeling like that iykwim as it is obviously awful that others share this experience.

It is like you know a dark secret that not many people do. You see 'normal' families and I can't help feeling very different. That is NOT because I have a disabled child but because of the brutalisation of the system.

Our head said 'I bet you're delighted' and I hate to say, no, traumatised. As you say, this is because this is no thundering victory but just getting the state to provide a basic education for my child. A child who is different and who the state apparatus doesn't think warrants provision to allow him to learn and develop without being mentally damaged.

This is why I feel so utterly, deeply appalled by those who purport to represent children's interests and who actually do nothing to change the very tangible devastation they must see around them - or would if they didn't just operate through 'networks' and at 'arms length'. Utterly betrayed.

I think it is also a bit like being poorly and desperately wanting to feel better.

When you're better you don't have a party to celebrate. You just try and catch up as best you can with the lost time and pray you don't get poorly again.

I expect you are also quite frankly too exhausted to do much else.

I also had a void in my head that was before filled with the nonstop day and night worry and thinking and composing of letters. The emptiness took a while to refill with good stuff to think about and even the bad stuff that had been left.

And I think you also need to be wary that when you are no longer fighting you start to grieve for the fight you were made to have as the adrenaline comes down. It sent me into quite a pit of depression which thanks to this board I was expecting, so be wary of that. Though perhaps with work you are guarding against it a bit.

Thanks Star. That is really helpful advice. I am fortunate it is Christmas - nothing like it to keep you busy!

At the worst of it, DH and I booked a babysitter every fortnight. We then couldn't afford to do anything other than go to a pub and nurse one drink for the whole evening (though we'd have a glass before we went too) but I think that really made a difference to have that time together to talk about our future, make plans and share proud moments about the kids.

DH had a very PTSD reaction. He was depressed I realise now for quite a while after the win. It was the injustice of it, the lies and deceit about a child who needed help desperately.

There was some research done a while ago by a lawyer who did medical negligence cases which showed that people were more likely to get PTSD as a result of a medical injury than a road traffic accident even if they had similar physical injuries. Its to do with the trust, the fact you trust a doctor and being let down by someone you trust is worse. Often victims needed counselling to get over the loss of trust e.g. some became hospital / doctor phobic, as much as recovering from the actual injury caused. The research shows being let down by the very people who are employed to help you triggers PTSD type responses.

I feel the distance from other families too. And its not them that has changed or that they are less friendly, its me. I hear their worries about their children and they just sound so trivial. Thats not their fault, I used to worry about trivial things too, now it has to be major to even register on our family richter scale. DS2 getting dx'd with diabetes this year was easy, I didn't even cry, just realised it was something that could be dealt with, there was a clear evidence based plan, accurate prompt advice, endless medical supplies and everyone was nice. I haven't even read a book about diabetes yet. Not like being left for months feeling desperate and helpless and watching your child get worse and no-one expressing a view about anything in case it implies they should spend some money.

My NT kids are going to be so resilient as adults. Anything less than catastrophic has become no big deal in our house.

For me its the stress I still find hard to manage. It took months to realise the lengths the LA would go to as it only became apparent bit by bit. So my stress levels went up bit by bit over many months. Whereas now I know what they are capable of so its like I constantly live my life on the edge and the slightest thing they do or even a simple meeting and I am right back at level 10 stress levels, there's no gradual build up. Constant vigilance as Wet says.

I completely understand what you mean Agnes. I was involved with an organisation supporting women suffering post natal PTSD and many of those suffered trauma as a result of a complete breakdown of trust. Many felt absolutely violated.

I think it is something to do with a big, powerful institution attacking you and invading the private space of your family. 'Normal' families don't get judged, watched, have to account for themselves and have their children analysed and reported on. It is invasive.

Then you get the lies and injustice from people who don't care, or even worse are downright malicious. Or perhaps even worse still who seem to think they are on some moral mission to defeat you. All on public money.

There is never any excuse for the tactics we have witnessed. Having a specialist placement officer ring school constantly and school's LA demanding that DSs attendance code be changed to unauthorised as they believed that would get them out of paying.

Being described as 'electively home educating' and being refused help after four months had gone by and they had run out of tactics.

Having them insist that DS must be seen by different SLTs and CAMHS for no good reason when they knew it would cause upset and when they couldn't even explain why they needed the assessments, just to make it look like they were doing something.

Then I know they go home and back to their families and their Christamases and don't have their working life ruined. They would think it appalling if it happened to them.

Yes to the loss of trust, the stress, hyper-vigilance, and to the distance from other families. Yes to resilience of all the dc to many things that would bother others, to calm acceptance of most non-catastrophic events, and my own 'war veteran' permanently changed personality.

I suspect many parents in the SEN maze have an even worse experience than that faced by many victims of medical error. Because although the consequences of negligence are devastating, it's usually not done on purpose. Most health disasters are individual level, accidental slips, judgement mistakes, or else due to work-overload exposing various massive flaws in the organisation of a particular department or system.

NHS cover-ups do happen, large-scale institution failure is not uncommon and some trusts are a disaster waiting to happen... but there's usually another nurse, doctor or physio somewhere to try and patch things up.

Deliberate withholding of information, dirty tricks, spurious social services referrals, giving misleading reports to other professionals, denial of blatantly obvious problems, unjustified withdrawal of provision and constant, outright, bare-faced lying... this lot seems to be reported almost routinely by SEN parents, particularly if a dc is complex and/or has ASD. We even laugh about it Yet no-one has suggested that even the worst of the scandal-hit NHS trusts routinely treated most patients like this

Yes to all of that Maria. Very well put.

Well done IE, so very pleased to hear it

Thanks Claw.

Agnes, Star and Maria, can I use those posts as the basis of a piece on the blog?

I will let you see it first.

yup

yup

Thanks - Wet too?

Yes, of course.

On the subject of post-traumatic stress, did you see C4 news tonight about grandparents who had fought Essex's deciision to put their grandchild up for adoption. They had been refused as adopters by the Council and there had been a Family Court hearing that they were not privvy too. The upshot was that the Council considered them as unsuitable because they already had 6 children themselves and there were concerns as to whether this potential adopted grandchild would receive enough of their attention.

So they fought the decision and were telling C4 News how happy / relived / shocked they were.

I mention this because this couple displayed exactly the same emotions as we'd been discussing upthread. They were relieved (obvioulsy) but also incredibly shocked at how close they came to losing thier grandchild for adoption (the grandmaother was crying) and also horrified that they had been placed in this (nightmare) situation.

I immediately thought - some of us know that feeling

my grammar and spelling are deserting me - sorry

Didn't see it Wet, but know that family courts are also quite something.

Not sure where to put this but ds' Independent SS have completed the minutes of the AR plus reports and sent them to the LA with a summary of parents opinion being that they are absolutely delighted with the placement, his needs are being met and it should continue'.

They have not copied us into the minutes and they have not included our parental report for the AR which didn't exactly say what they claim our opinion is, nor did they include our request for a couple of amendments to ds' statement which would improve communication flow and accountability.

bleugh...................