Month: May 2017

Facing Allegations of Fabricated and Induced Illness

Facing Allegations of Fabricated and Induced Illness

A guest blog from an anonymous professional

So what do you do if the suggestions that your child’s difficulties ‘don’t exist, as professionals can’t see them’ or that ‘you are causing or fabricating your child’s difficulties’ start to be aired publicly?

These are some tips based on shared experiences. Continue reading “Facing Allegations of Fabricated and Induced Illness”

Washing Powder

Washing Powder

I collected Peter from his residential school today and his clothes smelled of the school washing powder.

So what?

Jo sat an exam last week.  Her mum and dad knew nothing about it until the last minute.

DJ had his hair cut without his mum or dad knowing.  The first they knew was a photo he sent to them.

It matters.  That doesn’t mean it’s all a bad thing, but it matters and it hurts.  The fact that the care staff at Peter’s school do his washing and that Peter trusts them to do it, is huge.  At his last school “Peter to do his washing on a Friday” was one of his five awful targets.  He is ‘demand avoidant’ (his significant anxiety problems can become overwhelming if he feels people have expectations that he can’t meet).  He was 10 / 11 years old at the time and not long out of a mental health unit.  Which ever way you frame it, it was inappropriate.  It was too much to ask of him but he was judged on this utterly stupid target all the same.  When he didn’t manage to keep track of his washing he ran the risk of a member of care staff doing it for him and ruining his clothes.  It became a loose, loose, situation that slimply served to drive up his anxiety.  Either way he rang me hyperventilating with stress, anger and worry over mouldy swimming kits and ruined clothes more than once.

Peter has sensory issues, and since mainstream school destroyed his mental health I have been looking after him and unable to work.  Finding clothes that he found comfortable was difficult and he worried about the cost.  So he worries about his clothes, he found the pressure from the ‘target’ very stressful and then when they got ruined he was distraught.

So you see I am grateful that the staff at his new school take such care of him.  That he trusts them to take care of his clothes after such a short time there.

It hurts all the same.

There is another point to all of this too.  The journey/path/fight (what do you call it?) that we have taken to the point where our child is able to access the education, care and therapy that they need is, for everyone I know, for one reason or another, horrendous.  So actually, as DJ’s mum points out – you want to be involved in the good stuff, the successes.  Please don’t take those away from us too?

Not once in a million years did I think Peter would live away from us for much of his childhood.

We want our children to have whatever they need to have an exciting, happy and productive childhood, and want them to be in a fit state to live independently and happily as adults.  We don’t, however, ‘want’ our children looked after by other people.  It’s what they need but please don’t think, for one minute it’s what we wanted them to need.

No one gives birth to their child expecting that 9 or 10 years later they will be living most of their childhood away from home……

The washing powder smells nice.  For me its a happy smell (if there is such a thing), a reminder that Peter trusts his care staff.  They do his washing for him.  The waking night staff will iron it for him too if he wants them too……. and he likes that.

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Bullied by Headteachers: No fresh starts allowed.

Bullied by Headteachers: No fresh starts allowed.

I learned a lot from the contents of my Subject Access Request.  Under the Data Protection Act I requested a copy of Peter’s files and along they came.  In theory, there should have been no great surprises should there?  School staff should work with me in the spirit of a shared aim of ‘the best for Peter’, shouldn’t they?  Any concerns/thoughts/ideas/letters/reports they had should have been discussed with me shouldn’t they?  I had assumed we should be working together, certainly, I had naively trotted along to meetings with them being open and honest: expecting the same professional standards from the adults that call themselves ‘professionals’ within the school setting.  I was mistaken.  My expectations of decent/adult/professional behaviour were very misguided. Continue reading “Bullied by Headteachers: No fresh starts allowed.”

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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Using fidget toys

Using fidget toys

Rosie and Jo’s Mum

The advent of the fidget cube and the fidget spinner has prompted some interesting online conversations about the need for fidget toys in the classroom.

There are compelling arguments both for and against the use of these toys:

They make noises that can be distracting to other pupils. Clicking pens and tapping feet make noises. Children making tables vibrate by twitching their feet can cause distractions. Other children waking past the classroom window cause distraction. If we are going to start acknowledging that small distractions in the classroom affect learning, we had better make sure that the children whose sensory processing makes them more sensitive to small noises are also considered when minimising them. Or are we only concerned about the distractions caused to the neurotypical children?

Fidgets can help the child using them to concentrate.  If you sit in any large meeting, you will easily pick out the person fiddling with their pen clip, doodling on their notebook, twitching their foot. They don’t do this to distract their colleagues. They do it because they are concentrating. I’ve watched several trainers fiddling with the remote control for the projector when using PowerPoint. Should we ban fiddling, doodling and twitching in meetings too? No? Why not? Perhaps because adults can be trusted to accommodate each other’s needs?

Other pupils will want them. If other children are asking to use them, we need to think about two things. First, is the child who is complaining recognising their own need for a fidget?  Second, is this a good time to have a discussion about why we need to make adjustments to give everyone equality of access?

There isn’t enough evidence that they improve learning. If a child says they help, who are we to argue? It may be that using a fidget toy in  Maths lesson doesn’t improve the child’s Maths results but perhaps the stress reduction helps them cope better in the playground afterwards, supporting their social skills. There’s no guarantee but reducing stress is generally going to have positive outcomes.

It seems clear to me that fidget toys help lots of people, plenty of whom don’t have a diagnosed SEN so maybe we need to change our thinking? What if reasonably quiet fidget toys were available in every classroom, every day so children learned from an early age how to use them to aid their concentration? Would the teenagers currently distracted by fidget cubes and spinners still be craning their necks to see the one their classmate was using? What if teachers modelled then use of them? There can  no doubt that some teachers are helped by them in the same way as some pupils are. What if part of their education was to teach children strategies for managing distraction, equipping them for life in university lectures and meetings way beyond school?

If you watch a group of teenagers using the spinners, it is soon apparent than the conversation isn’t disrupted by the toys. These young people are deeply engaged in their discussion while being apparently unaware of the spinning happening alongside it. They aren’t distracted because the conversation is engaging and the spinner is there constantly so quickly loses its novelty value.

I wonder if the resistance to the use of these fidgets toys comes from a concern about losing control in the classroom environment when, in reality, properly supporting the use of fidgets in schools could mean that students are more engaged, making the classroom easier to manage. If students who find it harder to listen and sit still are able to concentrate more easily, once the novelty value of the gadgets wears off, could we end up with calmer, more inclusive classrooms?

Maybe this is a good opportunity for schools to reflect on why these fidget toys are so popular and consider facilitating the use of the quieter versions in the classroom so that everyone, teachers and pupils, with or without diagnoses of SEND can benefit from them.

 

 

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