Posted on by bereavedandbeingasingleparent · 41 Comments

Dark clouds

Midday dog walk, under the rain clouds, YES it felt that dark .

Almost daily headlines about how Special Education is in crisis in the UK. Councils can’t afford to keep up with rising demand, parents are struggling to access the support their children really need and schools are being pulled in a million directions with limited resources. The tragic result is that way too many children are being let down by the education and health systems.

But is it the real pressing thought for everyone. Is it the real issue for the Mainstream Media, the Politicians, the Service Managers and the Government.

I’m not hearing much in the debate about how we can better help the children who need the support. What I’m hearing is….

We are spending way too much on Special Education….

Special Education is diverting too many resources away from Mainstream Education…..

Pushy Parents playing the system…..

We can’t justify the rise in demand for Special Education, something is going wrong, there can’t be that number of real children needing real help…..

Why should Hard Working People have to pick up the rising bill…..

There is growing noise from Government that change is coming, but who will this change be for.

Currently there is a huge obstacle course ultra marathon which needs to be fought out for months and often years before a child is granted an Education Health Care Plan (EHCP). This is a legally binding document that is supposed to ensure that a child gets the necessary support they need. The EHCPs aren’t perfect, a child can still miss out on support, but they can help. It’s a baseline to work from. Hawklad was granted one after 2 years of fighting the system, he was backed by his Doctors and Primary School. After getting the legally binding document, some support started to arrive and it really helped BUT then …

  • If services are cut completely then the support they provide is just not available. Hawklad was identified as needing help with his speech and started work with a Speech & Language Professional. Real progress was made, then the Service was cut in a wave of budget cuts.
  • Some services are stretched, with real underfunding leading to long waiting lists. Hawklad was due to work with an Educational Psychologist. In our area there were 2 Professionals covering a huge geographic area and over 300 schools. After a two year wait he received an initial 30 minute assessment then was due for further work, he was never seen again, never made it to the top of the waiting list. Some services navigate the long waiting lists by just increasing the need threshold levels. Hawklad needed help with his fine motor skills and handwriting but revised thresholds resulted in him being removed from the waiting list. Even now, he really struggles to write,
  • At Secondary School things changed, the school approach changed. In a small school he received dedicated teaching time, the move to a much larger school removed that dedicated time. The funding he was granted was given to the School and added to the general teaching support budget. Each class of up to 30 pupils had a Teaching Assistant there to support the Teacher. That support hardly ever filtered its way to Hawklad. The teaching approach was if ‘a student doesn’t put a hand up to ask for help then the assumption is the student is fine, no assistance needed’. Hawklad never put a hand up even when he couldn’t read stuff, he didn’t want to shout out in front of other children that he couldn’t read… Like many children with special educational needs, in the larger schools, they become lost, assigned to the Bottom Set.
  • At the age of 18 most support services end. It doesn’t mean the need has gone, it just means there isn’t an equivalent adult service to provide support. At 18 it’s basically ‘you are on your own now……’. Hawklad now has no support and we both can see the negative impact that is happening.

These issues are not unique to Hawklad, many are facing the same or way worse. But my fears are that the current policy change drive has nothing to do with these educational issues, improving support for future pupils. It feels more like a balancing the spreadsheet bottom line exercise. How can we cut the Special Needs Budget, how can we restrict the number of children receiving support. Maybe the Government is looking at get rid of EHCPs and the legally binding stuff, then it’s game on to make proper, real cuts.

I hope I’m wrong but it is starting to feel like even more dark clouds are rolling in for many great kids in our schooling system.

Posted on by bereavedandbeingasingleparent · 43 Comments

Night shift

Misjudged a late evening walk. Walking past a graveyard, located down a very deserted country lane, just as the night roles in. Always a bit spooky.

Somethings are always a bit unnerving.

In the UK, having to contact a company called BT, that’s unnerving. BT is a big telecoms company.

BT aptly can also mean Bloody Terrible…..

BT provide our broadband and telephone service. Both have been broken for 6 days now.

Do you remember when you had to queue when ever you went into a branch in person. Then the Call Centre was introduced and you ended up queuing for that, listening to the endlessly awful piped music and recorded message – ‘your call is important to us’.

Then CONTACT US ONLINE was brought in to stop the hours wasted waiting in person and on the phone. With good old BT you now have to queue online to use their online service.

Initially the wait time was 15 minutes, which in normal time was actually over an hour. The ‘less than a minute’ wait time turned out to be another 20 minutes. Deep joy.

Fast forward 6 days and still no telephone or broadband. Back on to BT again for the 6th day running. This time going old school, having to use my mobile to call them. Apparently to the BT person, we weren’t a customer priority as we were just a reduction in service rather than a service down issue. I was keen to understand if we only get two services from BT, and both are 100% not working, why wasn’t that service down. Service reduction sounds like we are still getting some services….

On the call, I think my tone went from friendly, to cordial, to a little gnarly… But nothing over the top, no raised voices, quite calm really. But it was a bit too much for Hawklad. One of the things he’s always struggled with is conflict. It throws him, he gets anxious, completely on edge. I have to be careful and over the years I’ve got better, much calmer, trying to avoid putting him through those emotions. Very few things brake me out of calm mode these days. My Football Team’s inability to pass to a colleague and the name ‘Nigel Farage’ are the only things recently to bring on the red mist. But I can’t micromanage every situation. When he went to school, one of the things that constantly unsettled him was the daily, frequent conflicts. Teachers raising voices, pupil on pupil stuff. He would frequently struggle to differentiate between real conflict, minor disagreements and play acting. I wonder if it’s because he struggles to read social interactions, pick up on tone, body language, taking some dialogue too literally. It could be that he really doesn’t like seeing anyone suffer or be hurt. But it does make the modern world a difficult place for Hawklad to fully integrate in to. We are still trying to figure that one out.

And yep, still no broadband……

Posted on by bereavedandbeingasingleparent · 39 Comments

The elephant in the room

There is a lot of political and media focus on certain carefully framed questions at present in the UK…

  • Why are so many parents keeping their children from attending classroom education?
  • Why are there so many autistic children now compared to in the past?
  • Why are schools having to divert so many resources away from core teaching and into special needs support?
  • Why is there such rising demand for Child and Young Person Mental Health Services?
  • Why are so many young people unable to work and pay taxes?
  • Why are we spending so much on disability and carer benefit support? Why is it so easy to claim……

I will say it again, these are CAREFULLY FRAMED. All designed to support a narrative about the pressure this puts on businesses and hard working taxpayers. It’s like the framed questions and narrative which is being pushed about how immigration is causing unemployment, the lack of affordable housing, the breakdown in communities and public services. As a result many in our society now find themselves very much labelled as problems, a burden on others….

I find myself increasingly feeling at odds with the direction of travel the country is heading in. I guess I’m not the only one increasingly feeling like our voices are being drowned out.

Deep sigh….

In all this, in all the political, press, tv and social media coverage I’m not hearing three issues ever being discussed. I guess because they don’t fit in with the CAREFULLY FRAMED NARRATIVE. The large elephants in the room.

Just how difficult, stressful the process is, just how many hoops you have to jump through to try and claim any sort of financial help, disability and carer support. And when you get that support it is at best mo more than the bare minimum, it is NOT a life of luxury.

Child and Young Persons Mental Health Services are stretched to breaking point. It’s a service that has been cut back and underfunded for years. Huge delays in accessing services, services spread way too thin. Again it’s also a nightmare trying to get a young person registered for these stretched services. In our case it took two and half years. A process designed to discourage use. Far too many miss out on the help and support they badly need.

In the UK, as soon as a young person hits 18 they are signed off the support service. There is no equivalent adult service. With Hawklad his Care Lead wanted to hand him onto another service to continue the support after he reached the age threshold, but there was no service to hand him on to. So he was signed off. Support ended. To the number crunchers and spreadsheet decision makers, he is now classed as FIXED as he has been signed off from support. How many young people, how many families suddenly find themselves with no support, no help, no one to turn to. How many don’t even get the support when they were younger. The question shouldn’t be why are so many young people unable to work, why are so many listed as …… it should be why are we LETTING so many young people and adults DOWN.

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What they need

Kinda sums up the Yorkshire weather this week…

Foolishly I listened into a radio phone in as I drove towards home. I think the show was supposed to be a discussion about the proposed disability benefit cuts but had rapidly become a ‘this is how you parent’ rant. Caller after caller jumped on a populist bandwagon. Far too many young people are receiving benefit payments rather than being FORCED to work. Mental Health issues, autism, adhd, you name it were modern day fairy tales allowing the youth of today to stay in bed, play games and be PAMPERED….. ‘In my day’ the rants continued, National Service and a good clip round the ear was the answer.

Not one young voice was aired.

Not one Health Professional voice was aired.

Not one parent voice was aired who had any experience in supporting a your person with daily, life affecting real needs.

I would have called in but strangely the show never gave out a number as the switchboard was jammed, I suspect with even more ‘in my day’ tirades….

After thirty minutes of this madness I switched off and drove the last few miles in stony silence.

This is supposed to be 2025 and it might well just have been Victorian times.

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Huts

Tropical Scarborough on a blisteringly hot Autumn Day.

Forget the ice cream, hot soup was the order of the day.

Not sure if it was just the weather but when I offered to buy one of the brightly coloured beach hutches, Hawklad firmly declined…. The huts cost between about £70,000 to £160,000. You can rent them as well, Peak times set you back something like £300 for a week. For that you get a few kitchen items, a sink, deckchairs, use of the shared public toilets and free pet seagulls.

Peak includes Christmas, Wow that would be a brave call. Not sure the paper party hats would stay on too long with the inevitable Winter North Sea skin shredding sand blasting wind and icy horizontal rain.

Walking along the beach we passed a few groups of teenagers clearly starting the Half Term Break with some beach fun. I couldn’t help think about how Hawklad might view these scenes. It’s a part of teenage life that has so far eluded him, spending far too much time with his ancient relic of a Dad. Not sure those teenagers would spend too much time discussing beach huts…..

Posted on by bereavedandbeingasingleparent · 49 Comments

18

That’s a proper sign post, although I’m not sure how feasible it is to walk to Canada or The US from this part of the world.

Most of the support had already started to be pulled from Hawklad when he approached his teen years, that’s how it goes in the UK. Now at 17 the inevitable letter arrived. At 18 he will be signed off from the last service still providing support to him and his care will be handed over to Adult mental health care. In other words, the day he hits 18 any support he may need will need to come in the form of self help, or from family, friends, internet, leaflets and a few overstretched voluntary groups. NOT from health professionals.

As a Paediatrician cautioned me when Hawklad first started receiving support

Some support and help could be required for life. The level of support required may diminish over time, sometimes no support is required but often the level of support can grow as people try to forge their own adult life. But when someone reaches 18, we stop asking as a society, in fact we stop providing the support almost completely. Child Mental Health will inevitably hand over virtually every child under its care to an adult service that doesn’t exist in the UK. After that if someone picks up the courage to go to see a doctor, in most cases that doctor will have little real understanding of areas such as autism and will probably just want to put a plaster over any problems in the form of Anti Depressants.

As adulthood fast approaches for Hawklad, I keep increasingly focusing on the immediate future, the next stages. Trying to develop that independence yet worrying about where he can turn to if he ever needs support. It’s a sobering thought sometimes.

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Birds at dawn

Another early start. This time a seriously early one. A perfect insomniac storm. 3am. Hawklad has woken and can’t sleep. I have not been to bed yet and sleep feels a million miles away.

Hawklad wonders if we can see the dawn brake. On the coast.

So a few moments later and after I had sampled the meanest of espressos, we are driving. Driving past badgers, foxes and owls. Before 4am we arrive at RSPB Bempton Cliffs. It’s still pitch black and we have the site to ourselves. It’s such an eerie feeling walking in the complete absence of light and sound. Even to early for the thousands of seabirds perched precariously on the cliffs. No wind and even the sea was strangely becalmed.

In perfect time to watch dawn brake. No thoughts of an Albatross who was apparently out at sea. Who needs one bird when you get to watch all this unfold.

The dark was a challenge to my iPhone camera but it gave it a go.

By 7am a few people had started to arrive, mainly here to take up prime spots and wait. Hoping on catching sight of one particular bird. They had no idea what they had just missed. The deafening sound of seabirds hides the peace that existed just 2 hours ago.

We were back in the car and driving a few minutes later. The site had lost its appeal to Hawklad. Even a handful of strangers proving too much for him. But he had got to see a spectacular show first hand. Just the two of us so without his anxieties. He slept during the ride home.

Yes it was a ridiculously early start. Yes I went more than 24 hours without sleep. But it was worth it for those couple of hours when Hawklad felt that he had the world to himself. I suspect it won’t be the last time we do this. Yes there will be time for trips out to build those social bridges but those come with anxieties. We all need these times and places of sanctuary. Hawklad does. Yes even a worn down parent needs them.

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Nothing

It’s nearly 1pm. I need to pinch myself. Is it really a school day. School at home day. So far absolutely nothing from school this week. No lesson material, no assigned work, no idea what the class is doing. Nothing. That’s three blank lessons so far.

It’s been that quiet we even checked to make sure we hadn’t got the dates wrong and school is on holiday. But no, it’s a full school day.

“What shall I do Dad then….”

Well as we have no idea what his class was doing. No idea even what subjects the class was looking at. It’s a blank sheet of paper. A good chance for Hawklad to set the agenda. Take control of what he learns. So I said what any self respecting Dad would say.

Well Son you can go and wash my car……

“No Dad. What school work shall I do.”

What one subject do you most want to learn about.

“History, definitely history. Second World War.”

Ok spend the morning indulging yourself in the that. And when you finish. You can get off your backside, go outside and clean my car 😂😂😂

***********

And that’s what he did. He studied the Nuremberg War Trials. He so far hasn’t got round to cleaning my car. But here’s the problem. He’s taller than me so I can’t really put my foot down anymore. I might just have to do that job myself.

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Road

Yes it’s another one of those massive, multi lane Yorkshire motorways.

We are a couple of weeks into the start of trying to help Hawklad build bridges back towards the wider world again. It started with us taking the mad dog for a walk at night. Nighttime as it would be quiet with no other people out and about. Small steps in breaking out of walls that surround our little house and garden. The isolation which started 15 months ago.

We quickly realised that actually it’s always pretty quiet here, not just at night. So we started going for the walk a little earlier. Now nearer 7pm. Guess what. We still hardly see another soul. Currently that’s perfect for Hawklad. Very rarely we see a farmer or another dog walker. When that happens Hawklad immediately turns on his heels and heads quickly home in the opposite direction.

The other thing is that Hawklad doesn’t like to walk on the path. Just doesn’t feel comfortable doing that. So we walk on the road. Our massive and very busy road….

Well you can see just how big our road is. Just how busy it really is can be gauged on one fact. We have been walking every night straight down the middle of the road. Not once have we encountered a vehicle. The road is ours….

That’s such a cool feel. Such a cool feel for both of us. I can concentrate fully on talking and in the quiet bits, on dreaming.

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Leaning

A beautiful little leaning tree we pass on the dog walk… A favourite watering hole of a mad four legged one. No wonder it leans. It leans but it still has a purpose.

I was looking at an email sent from school setting out the upcoming year end exams. Day after day of exams. Often two a day. But what is the purpose. Whose purpose do they represent. Are they really Hawklad’s purpose. Apart from History, Geography, English and Maths, would he freely choose the other subjects. Would he put himself through these exams. Even with his favourite subjects, would he not focus on other areas rather than the predetermined ones set for him by the Government.

A Government Minister was waffling on about how our children should be focusing on this subject and that subject. They were doing too much of this and not enough of that…. Has he bothered to ask what the children want. He’s thinking about the purpose specified by the economy, not the purpose which necessarily the children would pick for themselves.

Ok I get the point of learning the basics but why should some out of touch numpty in London determine which subjects my child is taught. Determine which areas are looked at. Which textbooks are read. Set the teaching method. Determines how much religious education is taught. What art is studied. Basically setting everything…..

So whose purpose is this. Is it really Hawklad’s.