Category: Cross and Ginger

The hidden costs of fighting with the LA

The hidden costs of fighting with the LA

I, as a rule, have good skin.  I got a few spots on my forehead as a teenager, and that was it, I was very fortunate.  Now as I type, I have a nasty itchy rash all along both sides of my chin, not unlike beardy snog burn.  I haven’t got this from snogging, sadly.  The rash extends down to my collarbone, over the left side of my ribs and then down both legs.  Naked, I look par-boiled.  My previously thick mop of curls is thinning at the temples. I’ve got a permanent frown line, and my jaw hurts from where I grind my teeth in my sleep.

I see my dermatologist regularly.  She is very well respected in her field and so far her prodding and poking hasn’t produced a definitive reason for my spottiness.  “Are you under any particular stress?” she said.  “You know, more than the usual life stuff?”  I heard myself saying “No, just the usual.”  She continued with her prodding, muttering quietly to herself.  “No wine” she said.  “It’s the histamines, you don’t need those.  And try to take things easy till I see you.”  She packed me off with a warning not to dye my hair until this current battery of tests was over.

On the drive home I thought about stress.  What is “just the usual” in my life at the moment?  Well my hair is really, properly awful.  I have long grey roots which I am desperate to dye, plus my baldy bits where it’s breaking of at the temples.  This bothers me – I don’t look like me, I look like the driver of the school bus on SouthPark.  Mr. Ginger says I’m a bit ratty too.

I kicked off my shoes and headed to my desk to attempt to tackle the huge stack on files dumped in the middle, all of which pertained to Little Ginger’s forthcoming EHCP tribunal.  I’ve fought legal battles before, and won, usually on technicalities of process.  Somehow this feels different.  The LA’s draft EHCP was shambolic to the point of absurdity.  It felt like I’d been spun round over and over and couldn’t see the start from the end.  Unpicking it, line by line, and referencing each part of the law unpinning SEN has been exhausting.  I resent terribly having to do this.  We went through all of the plan with our SEN officer before the draft was issued and every single alteration was either resisted or ignored.  It is like a study of how bad an EHCP can be and there’s a part of me that wonders if that is deliberate.  Reports the LA have themselves referenced have then been ignored.  Only one of the 8 needs outlined in section B has any provision in Section F.  And all of Section F is linked to outcomes, not need.  The document is nothing short of derisory.  It is an insult to my intelligence, and worse, an insult to my son.  I can take it on the chin, but he can’t.

All this is making me very poor company.  SEN law is literally the only thing on my mind.  The school we want for him is really only accessible if the LA agree.  My panic centres on what if he doesn’t get in.  And then what if he DOES get in, it’s such a lot of change for a little boy who doesn’t like change at the best of times.  I’ve started what I now know to be called “magical thinking.”  It’s indicative of mental strain apparently, I do it when there is literally nothing else I can control.  “If this traffic light changes to green now, that means we’ll win the tribunal.”  “If I see two magpies today that means two for joy and that means we’ll win the tribunal.”  On it goes.

Whether we win at tribunal thankfully won’t be based on green lights and magpies, but sometimes that’s the lack of control I feel.  I pour over his reports highlighting section after section, attempting to attach them to the correct need and provision.  I email all his specialists to ask for updates, clarifications, specificity, and then deliberately don’t add up the fees they charge.  I dig through case law (God love David Wolfe) so that I can quickly isolate the bits which support my arguments.  And all this is so my beautiful boy can access what so many take for granted.

Those outside of this madness cannot believe it’s really that bad.  That a system could be so broken and yet still appearing to function.  That a Local Government department can be so opposed to helping the very children it was set up to assist.  I would never have believed it of Britain.  And there’s a part of me that thinks that a more outwardly corrupt country at least is open about every man having his price.  This disfunction is covert, and the price we pay can’t be handled by greasing the palm of an official, perhaps mores the pity. 

By Cross and Ginger

 

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Autism and Minecraft. 

Autism and Minecraft. 

 

My husband, a programmer in an arcane computer language (AS400 if you’re interested) was asked to give an example of one of something I’m good at. “She’s relatively computer literate” he said carefully. “Relatively.” Fine praise indeed. As a child I learned simple coding on a wobbly ZX81 which would randomly lose all its data. I’d lost interest by the time the Spectrum came out, even if it did have coloured buttons. Now, as the mother of children who include boys with autism in their number, I’m thrust back into the world of tech stuff. Continue reading “Autism and Minecraft. “

Lies and Misinformation #SEN #EHCP #Autism

Lies and Misinformation #SEN #EHCP #Autism

‘Well of course he will never get a Statement, or the new EHCP.  Never.  He has to be working at half his chronological age.”

“Well of course the Ed Psych might well say he needs a sensory room, but how on earth can we pay for that?  It’s all very well of him to say that but he isn’t paying.”

“There’s no funding attached to an EHCP and we’re already doing what we can.”

“We’re already bending over backwards for your child, why do you still insist on more?”

All things that my son’s school said to me over the past year.  Before I start, let’s get one thing straight.  It’s a good school, run by good people who genuinely care for the children.  And they repeat what the Local Authority tell them.

Not unreasonably – we expect public sector employees, paid from the public purse, to tell the truth don’t we?

Is misinformation a lie?  Possibly.  The result is the same – that the very people who should be supporting and advocating for our children, are not equipped to do so.  They believe what they have been told by the County.  And the County believe they are right, even when they’re wrong.

Of course none of this is clear at the outset.  We trust schools with our beloved children, and assume they know about This Sort Of Thing.  It was only at our planning meeting for EHCP with the SEN, officer amongst others, and school, when my son’s SENCO and teacher sat silent, that I realised they had no idea what was going on, or who was in charge.  When I challenged them later, they were incredulous.  “That’s the Local Authority” they breathed in hushed tones.  “You have to do what they say.”

They were equally incredulous when I asked where it was written that the SEN officer must chair the meeting.  Or take the minutes.  I asked why no less than four LA staff, including the Ed Psych, and the school staff all appeared to have a little meeting themselves before we were allowed in the room, and we were told “Well we always do it like that.  We let the professionals in first so they can get their papers sorted, and then we bring in the parents.”  The teacher, whom I think a great deal of, had the good grace to blush when I pointed out just how patronising and unhelpful this was, and how it instantly set the tone of “us vs them”, especially when “them” included them!

I don’t blame them. I blame the (well meaning) Head, who when faced with having to send his staff into effectively a legal meeting, didn’t brief them.  On further examination, the head revealed he had taken the LA at their word too.  He kept repeating “But I’ve spoke to the SEN officer and this is what she said.”  Even sitting down with him with a highly annotated copy of the SEN Code didn’t make much of a dent.  His faith that County wouldn’t lie, appears unshakeable.

What he hasn’t realised is that this fact in effect makes him Them too.  Such is the adversarial nature of the SEN system that if he’s not with me, he’s against me.  This doesn’t make for an easy relationship – I have long been That Mother, and that won’t change any time soon.  I’m making Edward Timpson’s “agitators” look like tooth fairies.  It isn’t personal, I have no real dislike for anyone I’ve come across on the EHCP journey, I just don’t want them to get in my way.

I’ve also, like many parents, had to become as expert as I can be, at SEN Law.  I diligently did my online courses and studied hard, but what isn’t clear from the SEN Code of Practice, is how to deliver the news that those who are so sure of themselves, actually, aren’t even close.  That those who should be able to fight and advocate, are deliberately kept misinformed.  And that those who refuse to comply with the law and attempt to effect their own guidelines, are nothing more than obstructions.  We are faced with the difficulty of having to correct those who we then need to deliver services.  We are made to feel selfish and entitled for fighting for our children.  The sheer burden of the emotions involved are treated as irrelevant.  The legal battles we face are every bit as technical as say, appealing planning permission, challenging a dismissal, or the conveyancing on a property, but with one big difference.  This will never end.  My child’s disability will always be there, the battle will never really be over, there will never ever be a point at which we can crack open the fizz and say “we won.”  Any win is pyrrhic.

Peter and Lily’s Mum says pyrrhic means “Someone who wins a Pyrrhic victory has been victorious in some way. However, the heavy toll negates any sense of achievement or profit.” … she had to look it up!

CrossandGinger

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What I think about at 4am.

What I think about at 4am.

My superpower is being able to get to sleep wherever I am.  Trains, planes, Minions films, I can tell myself to go to sleep and I do.  What I can’t do lately, is stay asleep.  I wake each night around 4am.  And I wake with a jolt, and it is without fail the same thought racing around my head.  “What will become of him?” Continue reading “What I think about at 4am.”

Other Parents 

Other Parents 

Another post by Cross and Ginger, back by popular demand…

School starts off as a great leveller.  As parents we usually start with our eldest being dropped off, leaving us reeling from how fast time has gone, and wondering will they be ok, will they make friends, will they know how to manage without us.  Often we fall in with other parents in the same boat, bonded by the same unfamiliar anxiousness.  Then follows play dates, friendships, inevitable squabbles and misunderstandings mixed with pride and achievements.  Gradually little personalities emerge.  Shy, boisterous, bossyboots, clingy, sunny, helper.  Occasionally however, a child doesn’t fit.  Things that the other tinies take in their stride, this child struggles with, or simply cannot do.  Initially there are sympathetic looks from the other parents.  “We all have our off days” and “They’re so tired by this point in the week”. Continue reading “Other Parents “