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What could have been

Sometimes you get those moments when you just sigh. Sigh and think – what could have been. Now I could go down many routes with that thought. But today while watching a sunset flicker into life my mind was in schooling mode.

A fruitless day with school and the education authorities. Does look like support will be minimal going forward. The message is that if you can’t start back at school next week then it’s the parents responsibility to keep your child in line with classroom progress until they return. Suddenly the parent becomes curriculum specialist and teacher. I guess the hope is your child returns to school quick enough that they don’t fall too far behind. But what happens if it’s not a quick return.

We have a medical letter informing school that because of his severe anxieties and fears our son cannot currently return to school. No timescale has been set. Son has mentioned the end of October as a goal. The start of the next term. If that was the case then it’s 7 weeks of trying to keep up with the classroom teaching. But that’s just a finger in the air date. We have no idea when he will be in a position to return to the cramped classrooms. The first goal is to try and get him into a less anxious place. Then it’s to see if he can start venturing out into the wider world. Then we move into trying to get son more comfortable being inside with other people. Only then when he is more comfortable with life, can we consider a return to school. I’m not sure our PM or Education Secretary actual realise that to truly learn you need to be in a good place. Content, relaxed and comfortable. Actually they probably do realise this but they just don’t care. In their eyes it’s all about set teaching approaches, targets and discipline. Anxieties about a pandemic are brushed aside – schools are perfectly safe – no risk at all – force them back into cramped out of date classrooms – trust us or we force you back. Not ideal learning environments, a nightmare for those suffering from anxieties and fears.

But it didn’t have to be like this. Speaking with the school there was another way. School has introduced a very good homeschooling online system. It worked during the lockdown. The plan was from September that most pupils would only spend 50% of their time in school. Apart from those with exams, pupils would spend part of the week at home doing remote learning. That would allow school to further spread pupils out and create enhanced social distancing. Great plan but the government has dictated that all pupils must return full time. So the online schooling system has been turned off. So a potential route to help those pupils who are unable or uncomfortable about returning is not available. A method of helping a number of pupils to keep up, to learn and to avoid them being disadvantaged has been ended by the Government.

That’s a lot of school weeks that we have to navigate and try to stay in touch with his classmates. It’s going to be a real challenge. And it just won’t be our family in this position. Much sighing. Might as well enjoy the sunset.

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Mothballed

This is a mothballed Coal Power Station that is right on the furthest horizon we can see. We can only see that far as we are on top of a hill. It takes an effort to find it from here. Can only see it from one extreme corner of the garden. This is also at my poor old camera’s maximum zoom. I guess it’s a reminder of a rapidly receding age and will be getting demolished soon.

Last school week and it’s trying to end the year on a most vexing high….

Let’s see how many assessments we can squeeze into 5 days. The answer ….. TOO MANY.

I had spoken to school and told them that son was still not 100% following his hospital visit but would give the last school week ago. However he wasn’t firing on all cylinders. School assured me that they would go easy on him. ASSESSMENTS are clearly easy on him. That’s so how I remember school tests in my day. Then we come to English. He completed the online lesson and submitted a rather fine gothic story. I was impressed with the storytelling and especially the writing. It was grammatically very good. Whisper it, spelling was almost perfect. That is some progress for him. So I was a little surprised to receive an email from school at 11.30pm to inform me that his work in the lesson had been below standard and incomplete. Really. The teacher has not responded to my query as the email failed to provide any details. Well that’s helpful. Having reviewed the lesson material several times I can only assume that he failed to respond to one rather vague question. A hard to spot question requiring a one sentence answer. Son had actually answered it but forgot to upload a photo of the one line answer. Unsurprisingly not a mention of the story he had submitted. If I wasn’t already convinced about the failures of mainstream education then this has finally clinched the deal. Well stuff school. I’ve assessed his work as brilliant and he will be getting a reward for it.

Maybe it’s time to mothball our countries factory farming educational approach…

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Homework

The hardy old rose bush right next to the front door. Against all the odds, it just keeps on giving.

In a few hours the school at home project restarts again. One more 7 week push before we finally arrive at the summer holidays. What kind of Britain will it be? The old normal, the new normal or something else.

This afternoon was glorious. Hot (for here) and sunny. Unbelievably not a single cloud all day. This is Yorkshire remember.

Yes this is Yorkshire but sadly it’s connected to England. Which means it has to live with the Government’s take on education. So while the sun beat down, we were inside. Trying to get homework completed and revision to stick. It’s bizarre that we force kids to work during holidays and weekends AND yet we have a part time Prime Minister who avoids such weekend and holiday work at all costs…. Yet again one rule for the many and another much nicer rule for the few.

The really frustrating thing is what exactly is the homework achieving. Four hours today and what did our Son learn….

“What is the point of this Dad. I’ve not learnt one new fact. Not done anything which is interesting. I’m bored out of my mind. My hand hurts from writing and I dislike these subjects even more.”

Sadly I can’t argue with this. The school system here has been deliberately broken. Not by the teachers but by people in The Government. People who enjoyed the benefits of expensive private education. It’s not about developing individual kids now. It’s all about ticking political boxes for those in power. This government will not change its mind. But change is needed. So it will be local change.

We will continue with the school at home project until the summer. Remember this is not homeschooling….this is just trying to do exactly the same school lessons just not with the kids sat at a desk in the cramped classroom. In the summer our Son will decide what he does next. To go back to school or to go for full homeschooling. It’s his call. If he defers to me then he is leaving school. But what to do with the next 7 weeks. We have just brought in a new house rule.

Son will only be expected to do additional homework if it meets one of 3 conditions

  • He will actually learn something from it,
  • He will find it interesting,
  • It actually is going to contribute to his overall assessment. (Staggeringly much homework does not. Frequently it is not even marked in detail and sometimes not at all.)

We did have a fourth condition but that was dropped

“Dad that’s a pointless condition. How many kids will honestly admit to actually wanting to do a piece of homework. Definitely never me….”

So if a piece of homework does not meet one of these conditions then he won’t be asked to complete it. I will write into school and let the teacher know. If the school wants to push it then they can deal with me. In our house – I am the headteacher and remember I don’t currently have a PM…..

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What happened to the Bank Holiday

It’s a Monday. According to my cute animal calendar it’s Bank Holiday Monday. But apparently it isn’t. This week because of VE Day commemorations it’s going to be a Bank Holiday Friday. I must have missed that memo. So our plans for a late start ended rather abruptly. Feels like it’s going to be another odd week. Most of today was actually spent trying to get my head into school mode and convince son that he can’t really do the whole day’s schooling from the comfort of his bed.

Little success on either…..

“Dads whose to know that I’m going to school in bed today. It’s not as if the headteacher has a Eye of Sauron all seeing power.”

If the schools stay too much longer under the control of the current Schools Minister then I wouldn’t put it past schools adopting that form of teaching.

“I can effectively enforce social distancing during lessons. Apart from pets and my cleaner, no one would dare venture into my bedroom”

Somedays even his cleaner tries to avoid venturing into that place.

“If a bed is good enough for Lennon to have a peace protest then it’s definitely acceptable as a comfy classroom.”

Eventually Son was enticed out of bed with cookies. An impending attack by a dog returning from playing out in a sodden garden also focused his mind….. But I must admit I quite like the idea of bed at present. Maybe Bed Parenting might work tomorrow. So while I warm up the hot water bottle, I want to say thank you to Claire and Riya.

Thank you Claire for the nomination for the Liebster Award.

We’ve struck up a great blogging friendship over the last few months even though she keeps beating me at our daily balancing challenge. I’m sure she’s cheating…. So here’s goes with answering her questions.

  1. If you could have had any job/career what would it have been?  As a toddler I wanted to be a captain in Captain Scarlet. As a kid I wanted to be an Astronomer or Dr Who. Then I wanted to be a mountaineer. Then it was to be a goalkeeper for Newcastle and finally to captain Yorkshire at cricket. Ended up being an Accountant – figure that one out.
  2. If you were stranded on a desert island what three items would you choose to have with you? A helicopter. A person called Bear and a nice house. Guess that’s not the answer you wanted so…. A Swiss Army Knife. A fishing rod. The Lord of the Rings omnibus.
  3. What the thing you like most about yourself? My eyelashes.
  4. If you could relive one day again, exactly as it was before, what day would it be and why? Think it was in 2013. We caught the train up to Kleine Scheidegg. On a gloriousday we then walked down Lauterbrunnen. We played all sorts of games with our 6 year old. It was the best two hours ever. So much laughter and views to die for.
  5. If you could only see one more band/singer live, who would it be? AC/DC, never seen them.
  6. What is your biggest achievement in your life so far? Son…
  7. What’s your favourite way to relax (keep it clean please!)? Climbing, but I’ve had to ditch that. So now it’s running, exercise and blogging. Least favourite being watching Newcastle United.
  8. You can have a superpower for a year. Which one would you choose? Captain Marvel stuff so I could travel the Cosmos.
  9. What’s your favourite time of day and why? Friday 3.30. Schools finish so Son is off for the weekend.
  10. What are you most afraid of? Snakes. Wasps. Spiders. Drowning. My brothers old punchbag with a boxers face on it. Alvin and The Chipmunks.
  11. What are your ‘words to live by?’ Name the three most important for you. Chips, Crisps, pizza. OR love, laughter and listen.

Also thanks to Riya for the Vincent Ehindero Blogger Award.

1. What’s the best thing you like about blogging? And your advice. Making friends. At present I don’t get to socialise much these days. Blogging allows me inflict my bad and make new friends. And I do mean real friendships. My only advice is always have hope …. if I can do this then YOU certainly can.

2. What do you do to relax? Climbing in the pre parenting days. Now it’s blogging and running.

3. What is that one thing you are very grateful for? Three things. Our Son. Spending part of my life with such a beautiful person as my partner. Having been brought up by the best possible mum.

4. What is your happiest moment? Being handed our son after he had just been born.

5. Would you prefer a Cat or Dog? Got to be careful as we have both and gerbils. Let’s base it on this morning. The Cat missed the litter tray with his poo and the dog got excited and wee’d all over the kitchen floor. So it has to be the Gerbils currently.

I won’t nominate anyone as I have a rather bad habit of nominating blogs that are then deleted within weeks of the nomination. The last time I did, it was something like 5 of the 8 blogs were gone within the month. So best not nominate. I’ve been so grateful for the nominations over the last few months. I really have. But I think the time has probably come to do no more of these. Don’t want to risk deleting my own blog.

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Week whatever of school at home

Ive been thinking about what I will do if my job doesn’t survive the shutdown. The longer this goes on then the little company I work for will struggle. What’s hurting it is not the lockdown but it’s the lack of a national plan. What’s going to happen whenever things are safe to reopen. Currently the Government is clueless. Lots of words but a complete lack of willingness to think things through. Wearing a little NHS badge, slagging off the money footballers make and a smug smile DOES NOT COUNT AS EFFECTIVE PUBLIC ENGAGEMENT. So like many people we just don’t know if it’s May, August, November or 2021 when the company might start operating again. We don’t know what the regulations will be when we open. We don’t know what changes we will need to make. My head is telling me that I will stay furloughed until the end of June and then the reality will hit the company and it will have to fold.

So if our company is killed off by Government incompetence (not the virus) then what do I do next. Because of our Son it will need to be a largely home based, part time role. So what can I do? Well how about this as a niche market. The first Yorkshire home based wildlife photographer with a hint of Muppetry. I won’t be using any expensive photographic kit, just my very old iPhone. I can see a hit TV series to rival the excitement of Bear Grylls. Today’s action shot is an out of focus bird. That’s enough bird excitement for one day now. So it’s time to get back to homeschooling.

It’s week whatever of the enforced school at home project. Apparently it’s Friday. Only know as the school timetable is telling us that it’s Day 5. It’s been another mixed bag. Some subjects working well and some not so well. Some teachers are really embracing new ways of delivering the subject. One request – can we provide health warnings for parents trying to do some of the PE exercises – our bodies don’t naturally bend like those of our kids. A number of teachers are finding ways to build confidence and reward effort. Others sadly are still focusing less on the positive and more on wielding a giant stick. Consequently a clear pattern is developing on which subjects Son enjoys and which fill him with dread.

I have noticed a couple of clear strands underpinning our particular schooled at home process.

  • Where he does his work makes a huge impact on its outcome. Some subjects like History he actually thinks better by pacing about the house. He finds reading easier when he’s lying on the sofa rather than sitting up. Science works better for him when he’s outside in the garden, while Maths works best when he’s sat in the Lounge. Setting, room layout, wall patterns, temperature, space, background noise can have such a huge impact on concentration and mental wellbeing. It’s about what works best for each child and each subject.
  • He is benefiting from asking more questions. He feels constrained in school. Teachers have such big classes that they struggle to field the questions from the class. At home he can freely ask his Dad or look it up on the internet. In the classroom he is reluctant to ask any question which relates to not being able to read. At home he will ask for help.

These points are all pushing the virtues homeschooling offers in terms of flexibility and security. Virtues which have been sadly lacking in the current UK school system. As a household we need to find a sustainable way of maintaining those virtues. Sadly I suspect that can never be within the confines of our current school classroom setup.

Stay safe and happy my friends.

Posted on by bereavedandbeingasingleparent · 110 Comments

Brave New World Part 2

I wasn’t planning on having a two part Brave New World post but the staggering incompetence of our Government intervened.

This Brave New World post originated from listening to few callers to a local radio show. A number of times I heard the following heartfelt wish

I can’t wait for the restrictions to be gone in a couple of weeks, we will have beaten this virus and so we can get back to living like we did.

Sadly they are in for a shock. The lockdown will continue for another 3 weeks. It’s not like we have a tap that we can just switch the old life on and off. The eventual easing of restrictions does not mean we have won. Even in countries like Germany who have managed this crisis professionally, the restrictions are being eased while many are still dying. Thousands are still getting infected. We haven’t defeated this virus. All we have done is get through the first onslaught. What’s happening is that we are now trying to find ways of living and working around the virus. This virus is not going away. We wait for a vaccine. Yet even if we are lucky and a vaccine becomes available in the summer, it will take many months for it be manufactured and potentially several years before the programme covers everyone. Things HAVE TO CHANGE for this to work. It will be trial and error. Strict Restrictions may have to be enforced again.

So things will need to change. Certainly over the next year or so, maybe longer. Some things are relatively easy. Shaking hands surely has been consigned to the bin. Increasingly shops are changing how they manage customers to keep them and staff as safe as possible. What worries me is that in some areas the assumption seems to be that we can just go back to the old ways. Namely Schools.

Over the coming months schools will start to reopen. So as mass gatherings are still banned, the daily school mass gatherings will start. What will have changed. In the UK the answer appears to be nothing. It will be ok we are told because kids are at lower risk than others to this virus. Yet even today I’m listening to the Government warning

It can effect any person. ANY AGE. Even those without underlying health conditions can die from it.

But then we are told that it will be ok for the kids as more are naturally gaining immunity and yet we know so little about this virus. How long does acquired immunity really last for. Worryingly we are seeing increasing reports of people getting the virus more than once. Let’s be honest. What ever we do going forward is a risk. Sending kids to school is an increased risk now. So what are we doing to minimise that risk.

So when schools reopen – what’s changed. How are we going to safeguard the health of our kids, teachers, support staff and families. In the UK many school facilities are not fit for purpose. Insufficient and out of date hygiene facilities. A rammed timetable which provides no time for that number of kids to repeatedly wash their hands and for surfaces to be cleaned. Too many squeezed into such a confined space. Absolutely zero social distancing possible. Things have to change.

This is the time we should be looking at all options. Reviewing what can and can’t be done. How can we improve things for the better. Schools should be given the freedom and backing to make positive changes before the kids return. Give Headteachers the authority to protect those under their care.

  • Give them access to appropriate PPE and safety kit. Do kids and teachers have to wear masks?
  • If schools are forced to open before the summer break it’s likely to be happening while infection rates are still uncomfortably high. Do we initially focus on opening for just a small number of children. Just those children leaving in the summer.
  • Allow Heads to consult with parents on which kids can spend part of the school week at home.
  • Rip up the national school teaching mandates. Allow Heads flexibility over timetables, opening hours and subjects.
  • Allow them to vary teaching delivery for each subject. Some classes may need to delivered in the classrooms. But surely not all of them. For example in the UK we have access to an online mathematics teaching resource. The last few weeks have demonstrated that with the overview of the teacher, maths can be successfully delivered remotely. History can often be such a dry subject to deliver from the classroom. How about the teacher delivering lessons from historic sites (either with the class or recording the lesson). Lets make the teaching more engaging.
  • What potential untapped learning resources do we have amongst parents and the local community. At Son’s last school they did a session on the how the various body organs worked. A parent who was a Doctor delivered the lesson.
  • Some kids will need to be in school full time. But we will have a number of kids who can for at least part of the week be schooled at home. What’s the scope of saying some kids attend school for only part of the week and work from home for the rest of the week.
  • Invest in online teaching resources. I am a critic of our Son’s school. But they have invested in this area. They have delivered online schooling for every subject. Yes some work better than others – but it’s worked.

If we can deliver on some of these changes it will allow schools to space kids out more. We can bring down class sizes. We can allow those in school a chance to practice social distancing and effective hygiene. All things we are told that are essential for daily life now. Surely that’s a safer, more effective and sustainable way of delivering teaching in the modern age. I’m not a teaching expert but I have worked for years in logistic planning for public services (including schools). In our country we don’t ask the right questions early enough. Our Government does not allow Heads and Teachers professional freedom. That’s why education is failing so many kids and that’s why our schools are basically unfit to meet the current challenges. It’s time for change. We have to change or this virus (or the next one) will win the war. It’s time for change. Yes it’s time for a brave new world.

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Ever shrinking world

A photograph from our garden. Just five paces from the door. Part of Son’s world.

Our Son really struggles with health related anxieties. I remember the first pamphlet his Doctor handed to us about Aspergers all those years ago – second bullet point – may encounter obsessive fears over health and hygiene. For our Son they were real, life altering fears. Then in quick succession he lost his mum and both grannies. The fears became even more scary and real to him.

In the early party of his Aspergers life he was under the care of a wonderful Clinical Psychologist. She slowly helped but then she retired (and was never replaced due to the decisions backed by many of those in our current Government). His care became a real hotchpotch which achieved very little. Then we were so lucky. Son’s case landed on the desk of a young nurse health counsellor. Since then she has been the only constant through his care. Now because of Government cut backs, she is the only specialist help he gets. Although not an Autism expert she has patiently worked with him and delivered real benefits.

His fears became manageable.

Due to our Governments continued running down of the NHS, her workload has become ridiculous. She just can’t spend the time she needs to with him. But she does what she can. She still cares.

Then 2020 hit. Is it really only 4 months old…….

His fears have gone off the chart. Can you blame him. The worlds gone potty. Everything is up in the air and showing no sign of settling down. Because of the new clinical rules his wonderful health counsellor is not allowed to see him until after the crisis has eased. Being realistic that’s not going to be until the back end of the year at the earliest. So he’s started burning his bridges.

Bridges is a theme I am sure I will come back to over the coming weeks. The world of autism and the big bad world don’t naturally coexist. They are often separate. Links and bridges need to be built. Unfortunately the big bad world is not interested in developing links. It’s been up to our Son to try and build the bridges. That’s allowed him to enter the big bad world. Those links have never been particularly strong. NOW HE HAS BURNED THOSE BRIDGES. The outside world is just too scary and full of dangers. He has bunkered down to his house, his back garden, his world.

The thing is that when things start to improve again. And they eventually will. The big bad world will make no effort to rebuild those bridges again. One lone nurse counsellor will try. I will try. Sadly, I’m not entirely convinced Son will make much of an effort this time. Maybe in the future he will but it will take time. In the meantime his world has shrunk.

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Food

Now we are into the aftermath of the Easter Egg hunt. Son is happily piling on the calories and his Dad is looking at a bowl of dairy free cornflakes. Is this what my life has been building to…..

To be fair that calorie balance is right. Son tends to be very long and always below the median weight for his height. That is tall and slim. His Paediatrician told him that it was a great excuse never to diet. His Dad is average height (or to be strictly true – 0.5 cm above average) and keeping to an ideal weight is a bit of a struggle. That is big boned.

Son’s diet has been a struggle recently. Aspergers likes order and routine. We stick to the same 7 day food rota every week. To be fair it’s a reasonable diet with much fruit and vegetables. And many sausages…… But over the last few weeks many of his foods of choice have become unavailable. This has required change and change means STRESS. On top of the enforced food switches an increased fear of becoming ill has surfaced. So now he is desperate to eat healthy and avoid too many calories.

So the parents dilemma is trying to put that into a routine which is both sustainable and is actually a balanced, healthy diet for him. That’s at a time when fresh fruit and vegetables are often much harder to source. So keeping the calorie intake sufficient going forward might be a serious challenge. He has already started to refuse foods he considers unhealthy. He’s even started to question his chocolate intake. As the paediatrician explained a couple of years back

his weight is right at the bottom of the perfect band, but don’t let it drop below that. If that means a few more bars of chocolate than usual then that’s just fine. But just watch him. We really don’t won’t to go down the line leading to eating disorder.

Eating Disorders within the Autistic community is a significant issue. Research into eating disorders such as anorexia have found that anywhere between 15% to 35% of total cases can be linked to people on the autism spectrum. However food disorder health care is still largely done in isolation from autism specialists. Autistic services continue to be squeezed as a result of government policy priorities. So improved care and support for autistics with food disorders is unlikely to improve under the current UK government.

This may well be the latest challenge our son has to face down. So long may he tuck into his chocolate egg.

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First rant of the month and then the garden beach

Before anyone says anything this photo was NOT today and not 2020……

It’s a bizarre country which I live in.

A place where British war time spirit and a stiff up lip is the way to defeat this unseen enemy – well that’s what our newspapers are claiming. No I think you will find that it’s actually antibodies and vaccines that will do that. Self distancing will help dampen the curve but on its own it will not do the job.

A country which for 10 years has invested heavily in academic testing for an increasingly younger range of school kids. The only principle in UK education is meeting government targets by testing millions of kids, week after week. Test, test, test. Yet the same Government can’t see the importance of testing when it applies to a pandemic. They can’t even provide virus tests for our brave medics and front line carers. Actually the can’t even provide the appropriate protective kit to all our nurses. Suddenly we have a mad scramble for kit, tests and ventilators. It’s not as if the Government didn’t know. Three years ago a study reported to the then Government on how poorly prepared the country was for a pandemic. The Government (including many in the current cabinet) decided to bury the report.

That’s probably why the UK is soon going to have the worst pandemic mortality rate in Europe.

Deep deep sigh and divert gaze to domestic matters.

“Dad would you mind if I didn’t do any revision this week for the school tests. Not sure I’m in the right frame of mind for it.”

Given the current climate why on earth is the school doing exams. Oh I forgot – it’s government policy. Can we just give the kids a break. Especially as the tests are based on such a narrow educational range. It’s more about proving to kids what they don’t know and spotlighting their individual weaknesses. What about letting kids show what they are good at, what they do know.

“Ok Son that’s fine with me. When you feel the revision force is with you then if you want to, then do some. If it’s not then just have FUN.”

And that’s what we did. We had to abandon the planned eat some whip cream while bouncing on the trampoline competition. The pigeons who have adopted our garden have now decided to build a nest right next to the trampoline AND it now has eggs. So we opted for plan b and c. Try to make some homemade ice cream. Followed by setting up our very own beach. In the garage I found a couple of old bags of play sand. So that was emptied onto the little patio and the old kiddies paddling pool was filled with water. Shorts and suncream on. An MP3 file of seaside bird and animal sounds was played on my portable music player. Hey presto we are at the beach. Ok we need to work on the beach sounds. The sound of whale songs and walruses fighting are not that common on the Yorkshire coast – but that’s nit picking. As a safe, social distancing adventure it most certainly worked. Now I just need to rebag the sand for our next trip. Maybe it’s to a desert.

Posted on by bereavedandbeingasingleparent · 85 Comments

Prophecy

Colour slowly returning to the garden. Sadly just in time for the next weather blasting. Just so predictable….

A few years back our son had a wonderful medical expert who did an awful lot for him. Just before retirement I remember the experts prophecy. To paraphrase

Our country’s support for kids like yours is nothing short of a disgrace. Sadly if you think that the support he gets now is patchy and insufficient, well just wait a few years. It’s likely to get very much worse. Maybe when he is 12, most definitely when he is a teenager, the minimal support will dry up. He will get reassessed by clinicians who have no practical experience of your son. They will deem him above the clinical threshold and will turn off the support. Clinical threshold should be renamed budgetary threshold. It’s not a reflection of the clinical position. He will still have severe clinical need for intervention. The support will be removed because as a society we don’t support teenagers and adults on the spectrum. We expect them to fend for themselves. If they don’t fulfil their potential then tough. I’ve seen this happen to virtually every kid I have worked with. If they achieve anything in life it’s just down to themselves and their parents. On top of this the school system just assigns them to the bin. It stinks….

Sadly the prophecy is coming true….

Just before Christmas he was reassessed for one of the support services he receives. The assessment was done by someone who had never met our son. The outcome – the service was withdrawn as he no longer met the clinical requirement.

Today we had a therapy session at the local hospital. It’s a service he has had since he was 7. It’s made some great progress over the years. It’s taken time and many sessions. At the last session his worker agreed on a programme to help with his handwriting, keyboard skills, and areas such as shoelaces/school ties. The programme after that would look at trying to help with coordination specifically aimed at swimming and bike riding. He has significant problems in each of these areas. Well guess what. At today’s session his worker was joined by a senior member of the team. A reassessment was made of his case. After a few practical exercises we were informed that he was now above the support threshold. He was now discharged from the service. They would write to school and give them some suggestions on his future schooling. We were handed a couple of information sheets on handwriting and shoelace tying. We can ask his Paediatrician to review this decision. We are on the waiting list to see a Paediatrician – currently our last appointment was over two years ago.

So we are now down to one service support now. But that is so underfunded. His worker is wonderful but because of workloads she struggles to see him now. Last year we got invites to a couple of group sessions. His last one to one session was back in 2018. Clearly it’s only a matter of time before that last helping hand is removed.

It really feels like that the health service has now dumped our son since he’s a teenager. I guess they argue that it’s an educational problem now. Unfortunately the school system has washed its hands of our son already. Like so many kids the school’s write them off. Label them low attainment. If they get the odd exam certificate in the end then school has achieved its goal. Ticked it’s box on the Government’s school assessment.

So here we are in the brave new world. We are fending for ourselves. Our only support – a few pages of photocopied guidance from a textbook. How can we have got this so wrong. How many thousands and thousands of autistic teenagers and adults are in the position. Some of the statistics on autistic suicide rates, unemployment, depression and poverty are appalling. But society doesn’t care. Our leaders don’t care. That’s a truly sickening thought.