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.

Posted on by bereavedandbeingasingleparent · 34 Comments

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.

Posted on by bereavedandbeingasingleparent · 51 Comments

First signs

Look towards the base of any wall and there are the first signs of better weather. Spring is not too far off now. Not too far off even in Yorkshire.

Let’s hope it’s a sign of better times for all.

It’s amazing what an a mobile phone camera can do. Coping with really dark and grizzly early morning weather. Almost looks light. Wonder if it could do anything transforming this muppet into something more approaching George Clooney.

Suspect not…

Wonder if George would have sworn in a broad Yorkshire accent when he looked at the latest school email. Soon we can book a slot for the 4 minute online teaching – parent discussions. 3 full email pages and 4 attachments to explain how to book slots and what can and can’t happen in those slots. It took me far longer than 4 minutes to to wade through that lot.

The fundamental problem with the option selection process is the teacher – pupil relationship. Some of the teachers do seem to understand that additional support system be needed for Hawklad. Sone even try to provide that support. But others don’t seem to get it. Maybe it’s down to time pressures, maybe it’s down to not having the chance to develop a relationship with Hawklad, maybe they don’t care. Like everything in like, just like with say parents, with teachers – you get good ones, you get ok ones and you get not so good ones. You get teachers who will get a child and you get teachers who won’t get a child.

That link is vital to any pupil. It’s vital to a pupil with Aspergers, Dyslexia and ADHD. School can’t confirm which teacher and which teaching assistant will cover each class over the upcoming two years. Pick an option and then it depends on which teaching team you are eventually allocated. 4 minutes isn’t enough to bottom that discussion out.

Not much you can do in 4 minutes. Well it’s long enough to walk to some walls and see the first signs of Spring.

Posted on by bereavedandbeingasingleparent · 58 Comments

More rain

And still it rains. And rains. And rains.

And still it rains at school.

French Homework is to complete a crossword. A French Crossword. Marks will be deducted for incorrect spellings.

Dad I can’t even do a crossword in English never mind French. I can remember the sounds but I can’t spell the words. The Teacher knows this but just says I have to try harder.

And we have more…

Drama Homework is to complete an acting related Word Search Game. Really. Very early on his previous school it was identified that he could just not do Word Searches Tables. The Psychologist who looked into this established that for some reason he was not able to visualise letters and collections of letters if they were printed diagonally or backwards. On top of this his dyslexia just made identifying words difficult. As this was stressful for him it was strongly recommended that his education did not use word based games. Fast forward a couple of years and his current school now requires him to do word searches as it’s the set task for the class.

I can see the point of a French Crossword for some kids but how is a dyslexic kid expected to complete this. Has our school system become so inflexible that we can’t just vary the teaching programme a little for each individual child need. Clearly not. The Government is committed to this Factory/Production line model of education. That’s for State Schools. Private Schools have more scope to flex the teaching programme. Unfortunately many can’t afford to go Private. But that won’t bother Boris and his buddies. As long as the chauffeur driven car turns up and the expensive wine keeps coming.

Ok I can see the point of a crossword for French for some BUT… What is the pigging point of a word search for Drama. I guess it’s all part of the Government’s drive to make every kid spell correctly the defined key words. Spelling is given a higher profile that actually understanding what the word means. Maybe I’m wrong. Maybe the best way to develop the next Orlando Bloom, Keira Knightley, Anthony Hopkins, Robin Williams, Whoopi Goldberg and Tom Cruise is to focus on spelling. Oh hang on a minute these have dyslexia as well. So no I don’t see the point.

We just set too many of our kids up to fail. They see other kids repeatedly praised for great spelling or neat handwriting while at the same time they are just told to try harder. How demoralising is that. A phrase you hear often is that kids with learning difficulties have to try super hard just to keep the perceived learning gap from widening. DAMM RIGHT THEY DO. Too many kids are forced through the same stereotyped classroom hoop. Never given a chance to demonstrate their unique skill sets as these are not in the areas deemed valuable by the Government.

Too many kids have been failed by our society. It’s not as if our society is particularly successful or sustainable on the back of this. This has to stop. When it does stop and we start allowing all our kids to grow – just take a few minutes to think how good this world will become. That is a hope worth fighting for. That is a hope worth voting for.

Posted on by bereavedandbeingasingleparent · 54 Comments

ADHD and Aspergers

Beckies Mental Mess this week has been doing a great job of raising awareness about (ADHD) Attention Deficit Hyperactive Disorder. I’ve just read Rory’s words which explain so well what it’s like to live with ADHD.

From here in this quiet part of Yorkshire ADHD is very much part of our life. It’s now officially part of our sons diagnosis. But it feels very much like a junior version. During the long and ever so frustrating diagnostic process which he went through ADHD was an after thought. It was missed. Never mentioned. Everything was lumped into Aspergers and Dyspraxia.

Then our Paediatrician changed. In his first meeting with our Son he genuinely seemed surprised that he could find no mention of ADHD on the records. A few weeks later it was added to the diagnosis. Why was it missed?

We where made aware that Aspergers in most cases goes hand in hand with other conditions. Everything seems to merge together to give a unique set of symptoms and personality traits. It is often difficult to unpick the individual conditions. Generally Aspergers and Autism are just used as overriding terms to cover a wide and complex set of interrelated issues. In our sons case ADHD was just missed. A specialist went through the original symptoms list. Of the 16 original listed symptoms which were defined as Aspergers related 7 were later changed to ADHD.

As soon as ADHD was on the medical record we were offered medication. Interestingly although our Sons the symptoms had not changed at all suddenly the addition of four letters prompted the option of drugs. We declined. Or should I say Son declined. In his words

ADHD hasn’t changed me. I’m still the same person with Aspergers. It’s just who I am.

Since we declined medication ADHD has never been specifically mentioned again by our Doctors. They have continued to offer behavioural therapy to try and ease the young Aspergers kid into this strange old world. Due to Government cut backs the therapy is becoming increasingly sporadic. Once someone gets past a certain age the health support basically dries up. But at least something happened. From an Education point of view basically no school interventions have occurred. No assessment of educational impact has been carried out. It’s the standard education package for all regardless of any specific needs. It’s so much easier to bracket individual kids as low attainment.

This is the shocking fact in education today. Certainly here in England. Specific educational help to those with a learning disability – some prefer to call it a learning disadvantage – is denied to too many kids in our society. Effectively they are seen as an expensive drain on resources. So much easier to write them off. How do we explain that to our kids. How as a society have we got education so wrong. We need to keep shouting as one day those in charge will listen.