Being forced to fight for things you never wanted to need.

Being forced to fight for things you never wanted to need.

“Because you want him ‘Out of County'”

For parents of children with additional needs this paradox (fighting for something you don’t want to need) is normal.  It ranges from constant, every day, exhausting mini-dramas, to full out, full scale all consuming battles for survival where you have 3 choices: remove your child from school altogether, force them into a situations that will cause lifelong harm (school’s that ban playtime and use restraint and seclusion daily for example) or fight for something you never wanted to need.

Mostly, you are aware that if a few minor things had been sorted a few years back the stuff you are fighting for now would never have been needed.  It’s always cheaper to get it right first time – well unless you can force parents to remove their children from the education system altogether, then clearly you save a whole heap of money.   This latter situation is a real and growing phenonomenon it seems ….

Before Peter started his first residential school I had only ever ‘lost it’ twice with profesional staff.  Given our awful treatment by many of them them, over years, this in itself is quite remarkable.  Remember, professionals are allowed to be stressed, emotional and exhausted.  SEND parents are not and, bizarrely, must behave ‘professionally’ at all times or risk further assumptions and judgment.

One of these occasions when I ‘lost it’ was to Peter’s supportive and skilled clinical psychologist a little while after I had read a copy of his school and Local Authority (LA) files.

I had put in a Subject Access Request many months before, the files eventually arrived and had sat in the spare room for another few months.  I didn’t expect much to be in them and we hadn’t gone to tribunal so I hadn’t bothered with them.  Then, for some trivial reason I opened them, and Oh. My. Goodness.  I had no idea that Peter’s Head Teacher (HT) was so much more awful than just pretty useless.  The files revealed years of behaviour that to me seemed weirdly and extremely obsessional and exceptionally rigid.  Even after after Peter had left the school in question, this HT was still relentlessly pursuing a fabricating and inducing case nearly 2 years later.  “Peter is fine, it must be mum” and “I will stop at nothing to be proven right” was how it appeared.  The realisation of just how much had gone on without my knowledge, relentlessly and unstopped had freaked me out.  Pages and pages of crap that went on year after year and not a word had been said to me.  It left me hyperventilating and screaming “It will never, ever, stop” down the phone to the poor Clinical Psychologist.

The other occasion is more relevant to this story and actually happened first.

Peter was in hospital 150 miles away (mental health breakdown due to school related trauma and unmet SEN at school).  He was in Year 5 and had had his 10th birthday in the CAMHS hospital.  The LA wouldn’t assess him for an EHCP because he was ‘out of area’.  The hospital couldn’t discharge him because he had no EHCP and no school.  Stalemate.  Clueless and naive, I was desperately seeking a school that met the hospital criteria.  Wanting to believe that every school I considered would be at least ‘good enough’, but at the same time not wanting this nightmare to be real.  Not really knowing what I was doing, I ploughed on.  The LA staff wouldn’t help because “There aren’t any schools of that nature in our County”.  They told me to use google.  Unhelpfully, then, to explain one of the delays in sorting this mess out (but with no intentional unkindness) the LA case officer uttered the words:

“[It’s] because you want him at school ‘out of County’

It was a phone conversation and I practically imploded at the poor woman.  She had simply made a throw away comment that was part of every day parlance in the office.  I totally lost the plot.  My vulnerable little boy was in hospital miles away and had been for months.  The only way I could get him home, was to find a way for him to be away from us again at a specialist ASD residential school – and it was killing me inside.  It was killing all of us, but as far as the LA staff were concerned it was a choice I had made.

How very inconvenient of me.  

I screamed a tirade of stuff at the Case Officer and, remarkably, she didn’t hang up on me.  I haven’t done a SAR on her files and so as far as I know she is a decent person.  I still like her.

So Peter did eventually get to a specialist residential school.  I’m not clear what this one is specialist in, though; certainly not in Peter’s needs, sadly.  With no support and no EHCP, choosing the right school for him was never going to be easy was it?

So, after an OK couple of months at this school, then a worrying few months, and then a series of awful weeks and incidents that demonstrated very clearly that not even the senior staff knew even the basics of what they needed to …. Peter was at home again.

In a fragile state and terrified that my call may trigger “A ‘review’ of his needs to demonstrate he could go back to mainstream” I called the Case Officer.  The same one I had previously shouted at.  She was lovely and reassuring.  “These things happen” she said, “You’ll need to talk to the senior case officer though”.

Peter has been at home for 6 months again.  Not only do ‘these things happen,’ it seems, they also take months to resolve.   To be honest I think Peter has needed this time to recover.  ‘When special school fails’ on top of all the failures of mainstream it takes a whole lot out of you all.

So here we are.  We have spent 6 months as a family that live together and in just two weeks time Peter will go away again – for weeks at a time, and my heart is dying all over again.

So is Lily’s.

So is his.

He doesn’t want to go away, but he does want to go to school.  He does want decent therapy and the chance of a healthy future.  He wants friends and fun and qualifications.  So he has to live away from us for most of the rest of his childhood.  He knows people don’t get how hard it is, even family members, even people we see every week.

This time I am confident about the school.  Well at least my head can see it will be ok, but my gut won’t let me trust, not for a very long time yet.

Peter has made it pretty clear that his trust is going to have to be earned over and over before he will give any of it to anyone.

We don’t WANT our children ‘out of County’; or out of our home.  All we have ever wanted is the sort of ordinary things you dream of when you are pregnant… siblings at a local school together, local friends dropping in, a few years of ‘Mum’s taxi’ to various clubs and parties.  Ordinary dramas and a few friendships with other families of children the same age.  

What we got is not what we wanted; and not what we asked for.  In fact, it’s what we fought to avoid for years: against a sea of unprofessional and inadequate professionals.  Professionals who possessed too little humility, knowledge and decency and far, far, too much power.  

Being forced to fight for something you don’t want to need is so, so, cruel and more isolating than you can even begin to imagine.

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5 thoughts on “Being forced to fight for things you never wanted to need.

  1. This is so true and I went through it with my 18 year old. I’m being put through much worse with my youngest. Things need to change .


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