Monthly Archives: October 2013

Impromptu Autism Awareness Demonstration…..coming soon to any crowded place near you!!!

Just a quickie folks but it struck me this at the dentist this afternoon how far I’ve come, mentally and emotionally, in just four months.

The Whirlwind was on form in the waiting room, running up and downstairs, singing opera to the other patients, hiding and crawling under sofas, being a werewolf and attempting to abscond all interspersed with the kicking, hair pulling and punching mum routine. The old me would’ve been frantically apologising whilst struggling to contain this writhing, seething mass of teeth, feet and fists whilst only managing to cause him further anxiety and an escalation in the behaviour. The new me kept a smile on her face and a calm soothing voice whilst simultaneously keeping everyone safe and The Whirlwind reasonably contained and ignoring ‘those stares’.

I also took the opportunity to raise a smile AND awareness in the waiting room by announcing to all, as we corralled The Whirlwind into the dentist’s room, “It’s ok folks, I’m not charging for today’s autism awareness demonstration!” I’m pleased to say that the majority of the other patients did indeed give me a smile at this!

If you find yourself in a similar position try it, they’re staring anyway so it’s not like you’ll suddenly BECOME the centre of attention – you already are, so go with it and use it as a way to educate others about these invisible disabilities, maybe then one day we WON’T be the centre of attention when our child melts down in public!

COMMUNICATING about mis-COMMUNICATION

Why is it the (very) few services that are supposed to help actually hinder or, in many cases, make the problem so much worse?

As regular visitors will know my son is currently excluded from mainstream school as a Health and Safety Risk and we are struggling to find a special school that can meet both his academic and special needs. In the meantime the LEA’s Intervention Team are ‘providing’ his education.

Before the school summer holidays this ‘education’ was one hour every morning at a local PRU (Pupil Referal Unit), in a room on his own with two members of staff. At the start of the school holiday I was informed this would need to change in the September and they would also try to provide more education, however by the end of August, and despite constant chasing on my part, I had still not been given any idea of if, where or when he would be educated in September as the Intervention Tutor (from here on in referred to as the IT to prevent a case of repetitive strain injury!) in charge of his case was on annual leave for the entire summer holiday.

So, fast forward to the start of September and I’m told he will be at the PRU every afternoon from 1-3, all fine and dandy, double the education he had been getting so it’s a step in the right direction. You really would think that I’d have learned by now, wouldn’t you?

Within the first week this has been cut back to an hour again with faint rumblings that if he doesn’t settle soon they won’t be able to take him at all (yet again the dreaded Health and Safety was mentioned) – really, this was the first week and these people are supposed to understand about autism and transitioning struggles????? You can imagine my surprise when I get a message the FOLLOWING WEEK to tell me that he’s settled in so well that they’ll now take him full afternoons at the unit in the KS2 classroom with the other children! So off I trot to the induction and a date is set for him to start the following Monday.

Whilst all this is going on the IT decides to add in an hour with a tutor every morning at the local Children’s Centre, before he starts this additional education it’s upped to TWO hours, ok, still no problem, I just need to prep him for two hours instead of one, that’s do-able! Oh, and of course he needs to be prepped for extra time at the PRU……and suddenly having classmates……..and a different taxi driver! Still, we work on the prep and things aren’t going too bad, intensive as I’ve only got the five days to prep him but we can do this, right? Then comes Friday and a phone call from the PRU, “we need another week to get things organised” sigh ok, so I tell them that unless they tell me otherwise I’ll assume that the interim week will be 1-2 at the unit as usual.

Ok, now it’s this week….the interim week. Monday morning we turn up at the Children’s Centre at 9am, by 9.15 no tutor and The Whirlwind has started to throw furniture, think we’d best go home. Phone call to the IT to find out what’s happening and it seems the tutor thought that writing a note that the homework should be done by Tuesday 9am would be decoded as “the Monday session has been cancelled” hmm, O….Kay, obviously my implanted education-ese translation circuit is on the fritz! Hey-ho, never mind let’s prep for the afternoon at the PRU. 12.50 and The Whirlwind wants to wait outside for the taxi (his usual routine) and as time ticks on he’s getting steadily more wound up “what time is it now?”, “where’s the taxi?”, “I’m going to be late” At 1.15 I phone the taxi driver to be told the PRU have booked him to pick The Whirlwind up for a 2-3pm session???? By now it’s obvious that NO WAY will I manage to wrangle The Whirlwind into a taxi today so I tell him not to bother and then phone the PRU to find out what is going on. Apparently the IT organised it and should’ve told me about the changes….ok so this is the same IT I spoke to this morning about the mis-communication? And she didn’t think to communicate that the PRU time had changed?

Tuesday morning, despite my telling the IT two weeks ago and reminding her during the phone calls yesterday that The Whirlwind wouldn’t be attending the morning session the tutor apparently turned up at the Children’s Centre! Oh well, at least we know the taxi will be here at 2 to pick him up for the PRU. Before he returns home from the unit however I receive a phone call to give me a heads up that he’s had an unsettled afternoon, during this conversation it becomes clear that the IT hasn’t passed on the message that he won’t be in Wednesday afternoon as he has a dental appointment……..am I the only one spotting a communication problem here???

Well, it’s now Wednesday, we’ve had two days of communicating about the mis-communications, surely today will go smoothly. The Plan – 9am to 11am Tutor at the Children’s Centre then home for lunch and a dental appointment in the afternoon. The Reality – struggle to get The Whirlwind to the Children’s Centre BUT we made it AND we were on time! By 10 past 9 there’s no sign of a tutor and chairs are starting to fly again so now comes the struggle to get him out of the centre and home without him harming himself, me or random passers-by and a text sent to IT informing her of this. At 10 I get a phone call from the tutor who’s turned up at the centre to be told we’ve left and he tells me he was told to attend 10-11!?!?!? The phrases brewery and ‘p*ss up’ float into my mind but thankfully don’t find there way to my tongue! At least I know (or at least hope) that this afternoon goes smoothly as I have made sure the tutor and taxi driver BOTH know he won’t be there, let’s just hope the new dentist is a better communicator with autistic children than those whose job it actually is to COMMUNICATE with parents and pupils with communication difficulties!

20131009-105650.jpg

Life in Limbo

While putting life on hold, yet again, in the hope of call-backs from two more special schools within travelling distance I’m left seething inside.

How dare they not take this seriously, can’t they see this is a 911 emergency? Don’t they see a child being denied an education while they tick forms and pass them between departments? Don’t they realise that when they put it in their pending tray and lock up their office at night that that means another sleepless night while I toss and turn trying to come up with a Plan C, Plan D….Plan Z, in case they turn us down?

I’m not saying they don’t care, I’m not saying they aren’t trying but while our children are just names on a file, ticks or crosses on a chart of eligibility they forget that at the other end is a family in turmoil, a family struggling through a minefield of legalities, a child feeling worthless and unwanted, a mother feeling powerless.

The entire education system in the UK is not ‘fit for purpose’ when it comes to autism. Our children cannot cope with a mainstream environment but LEA-maintained special schools cannot take our children, as in most cases our children are too academically-able to meet the criteria.

It’s about time that LEAs realised that needing special school provision isn’t just about the academic and start providing special schools for the 1:88 children with autism, the children who could excel academically if their educational setting was truly ‘autism friendly’ and not just a case of “well yes, the class is noisy, distracting, cluttered …but, look we use a visual timetable so we ARE autism-friendly” which seems to be the norm for mainstream schools trying to be inclusive.

Until that time my son and many, many other autistic children will continue to exist in educational limbo, unwelcome in both mainstream and special schools, with their parents desperately fighting for something that neuro-typical parents take for granted – an education for their child.

20131004-175550.jpg