Fingers crossed

Still cold but a heatwave apparently is on the way. A few days at 1C. Then after that it’s either wet and windy or a plunge back into the freezing stuff again. Think I will take the freezing stuff. We get far too much of the wet, gnarly stuff and that’s just in summer.

I’ve just finished the morning exercise. Been trying to drag out the workout for as long as possible. It’s so much better than what is to follow…..

I’m trying to work through a 56 page application form. Having to reapply for a small benefit which we get. Only small but it currently makes such a difference. Especially at a time when work is so thin on the ground. Likely to be thin on the ground for some time. Had hoped it would start to pick up in March but that is looking over optimistic. Maybe the Summer. But on the bright side I still do have a job, many have lost theirs. Work is at such a premium.

It’s ironic to look back before the pandemic. I was trying to find a new job that would better suit the homeschooling role which might be needed down the line. I was looking at so many options. Well that homeschooling gig crashed into effect and not in the way that I had envisaged. Due to the pandemic suddenly all the alternative work options have disappeared. It’s now about hoping that I can keep my current job that at least partly fits the homeschooling role. The current full time homeschooling role which may become permanent.

So at present this benefit form needs completing and it’s taking seemingly for ever. Question after question. Trying to find evidence to justify the answers. The problem is that the government has tightened up the eligibility criteria. It’s requiring more evidence. Adding more steps and hurdles. Up to date clinical opinion is required. How does that fit with waiting more than two years to see a paediatrician. Unable to access services due to cut backs. A pandemic. It doesn’t….

So just got to wade through the form. Submit it and see if the benefit continues in March. Fingers crossed.

Help

This is my favourite place to put my hot drink mug. Just the right size. Nice height. Views over the farmers fields. It was kind of the people who built the house to put this here all those years ago.

Sometimes you just have to do things yourself.

I remember having a conversation with a leading clinical psychologist just before she retired. She told me about the UK Health Service and its approach to kids like Hawklad. She was so disheartened. Increasingly parents have to fight for any support. The Government (this government) are intentionally making it more difficult to access public services and receive support. The view from the top is that it’s not the responsibility of tax payers to fund these things. It’s down to the individual. The more you can afford the better the service you can secure. The psychologist warned me that as soon as Hawklad became a teenager the services which have been secured will start to ebb away. Reviews by ‘independent’ managers will suddenly find him just above the support threshold and he will be removed from the support list. When he gets to adult life she said the support would be completely gone.

Hawklad turned 13 this year so where do we stand…..

  • He hasn’t seen a Paediatrician in two years (was supposed to be every 6 months). He has dropped down the priority list and is at the wrong end of the waiting list.
  • Zero help from school on his dyslexia. The NHS is prevented from providing any support as it has to come from Education budgets now.
  • Zero help with his Aspergers. The psychologist was not replaced when she retired and the service is on hold (4 years now).
  • Zero help with his ADHD as he was reassessed as being above threshold.
  • He did receive physio therapy help with his dyspraxia. He was due to start a programme to help with his writing and keyboard difficulties. But two weeks before the programme was due he was seen by an Independent assessor (never worked with Hawklad before). After 3 quick tests which lasted 4 minutes he was assessed as being above threshold and the service was withdrawn.
  • Grief Counselling still officially waiting…
  • The last support he has is an anxiety counselling service. But sine his last wonderful support worker was moved on, the service has started to dwindle away. No idea when the next support session will happen. He’s unable to venture out of his house ot touch objects due to his anxieties BUT as he is not in physical danger then he is classed as a low priority.

Sometimes predictions come true.

Sometimes you have to do things yourself .

Curve ball

Definite curve ball from school today.

I have wrote about the problems Hawklad has been having with French classes at school. The way the subject is taught just don’t suit him. Dyslexia complicates the learning process. Being at home adds to the difficulties.

I have been trying to get the school to modify the teaching approach in this one subject. Even switch the language to one which better suits him and one he is more interested in. Basically met with a brick wall. Then today’s curve ball.

The school doesn’t feel that he will be able to pass exams in this subject due to his learning issues. So they are now recommending that he drops the subject completely. Undertake no language learning at all. He would use the French class time to work on his other subjects.

So rather than try other learning routes they just want to ditch the subject. I’m kind of speechless. Will let Hawklad decide what happens next. BUT my initial take is that

…..Sadly it reflects the lack of flexibility in the UK teaching system. It also reflects the general approach schools take with those pupils who have learning disabilities.

Argument

One leaf in the corner of the garden. It definitely has a story to tell.

I was looking at a Social Media exchange about a secondary school in another part of the country. Parents were discussing how good the place was or wasn’t. Clearly it was quite a heated exchange. On one side you had comments like

It’s a great school…

Look at the grades the kids get…

It gets fantastic OFSTED ratings…

My daughter is likely to get straight A’s thanks to the teaching…

I love the school. It has discipline and look at the results it gets…

My daughter won an award for Drama because the school pushed her…

Fantastic teachers,

You always get a minority who are never happy…

Well if your not happy take your child to another school

Well homeschool then, miss out on the special treatment you son gets then…

And on the other hand you got comments like…

My child has just been dumped in the bottom class,

The teachers don’t care,

My daughter is getting no help, just left to fall behind,

My son keeps quiet and doesn’t cause any trouble in class. Wish he did as the teacher might start spending some time with him,

I’m not sure the teachers even want to know that he has ADHD,

School is not bothered that my son is scheduled to get no grades,

It is useless at helping kids out who have special needs.

That last line gives the basis of the argument away. The English School System provides one model of teaching for all pupils. It works for some kids but unfortunately a few too many are left behind. Increasingly special education is seen as a distraction to the main school function. An unnecessary drain on resources. You see articles in the Press basically talking about those children getting funding to cover additional needs as a gravy train for parents. That approach mirrors government thinking. Yes schools are given some targets for educational need but a school that fail in this area can still be seen as Excellent. The key is hitting the limited exam, performance management, how well they stick to the curriculum and the financial targets set for them.

I bet you can guess what side of the argument I would have been on. But I would add one important thing. All schools have good, dedicated teachers. Teachers who care. But they can’t provide for those children with additional educational needs when they are hamstrung by government. Where they are undervalued and trying to teach classes with up to 30 children crammed into them. With a set and unwieldy curriculum which must be strictly followed. I remember a conversation with school about computing. The teachers shared my frustration at having to teach Hawklad so much coding. Coding is a nightmare for dyslexics and some on the spectrum to learn. But they had to teach him that because it was a key part of the national curriculum set by government. Surely we can find a way of teaching all kids which offers the change to offer different learning routes depending on the individual.

A school can be excellent and at the same time fail to many of the next generation.

Eat chocolate

I received a lovely present today in the post. The government support package for Hawklad will expire soon. So I need to reapply. Helpfully they have sent the 50 page application form to complete. I can’t submit the old paperwork and need to have more recent assessments and evidence. That’s a nightmare at the best of times but during a pandemic!!!!!!!

Only thing for it….. A bar of dark chocolate, a decaf coffee and listen to some angry music. Today’s choice, the latest from Roger Waters. That’s one seriously cheesed off artist recording those songs. That fits as that’s the music I would make today. Normal people are forced to jump through hoop after hoop for their kids yet friends of the Government are awarded multi million pound contracts without any due process. Roger Waters would certainly get the irony.

Well I then made a start. Book an appointment for a new assessment from a Paediatrician. On the waiting list. That’s currently a one year wait and growing. It’s a start…. Where’s the next chocolate bar.

But here’s the really scary thing. Our Son is fortunate as he has had some support. We somehow battled through the intentionally difficult minefield to get that. So many are either unsuccessful or are just missed. That’s the children, adult support is almost none existent. Discarded by our society that has its priorities so badly skewed. What’s the answer. Certainly to keep fighting. Most definitely to eat chocolate.

Which way

In life you get asked so many questions. But some questions keep repeating themselves. Like the classics ‘Are we there yet?’ and ‘where’s the remote control?’.

Then there are other questions. More vexing questions. One question keeps popping up. I’ve been asked this by family members, other parents, teachers and even once a nurse. It does have a number of variants but it’s basically the same question

Will your son get better?

Will his Aspergers improve?

Will his Aspergers improve as he gets older?

I’m no clinical specialist. Just a bumbling parent. But here’s my take on the question.

Aspergers is a lifelong syndrome. It’s not going to get better. Its not going to be cured. It’s not going to disappear. What might change is that over time the individual and the family may develop strategies to help deal better with some of the situations life will throw at them. Also some of the specific symptoms may fluctuate over time. For example in a number of individuals something like repetitive hand flapping may become less prevalent with age. Also Aspergers often coexists with a number of other conditions – dyspraxia, ADHD, dyslexia…. It is possible that some of these conditions could improve with time. For example our son has with hard work started to overcome some of the issues which his dyspraxia and dyslexia had caused him in his earlier years.

So yes it is possible that improvements may occur. But here’s the thing, it’s not guaranteed. Each individual case is different, unique. Things may stay the same with age. They can also get worse with age.

So we just don’t know.

The Clinical Psychologist who did the full review of our Son was quite clear. The majority of his Aspergers related traits will stay with him over his life. However at around the teenage period changes may start to occur. It could go either way. He could become fully independent or he may regress and may need some form of life long support. She talked through a number of possible scenarios. One scenario was that some improvements would occur potentially in the areas of dyslexia and the diminishing of some of the repetitive behaviours. Another scenario painted a downturn in his existing anxieties and fears. This could occur naturally during his teenage years or could be triggered by a single significant event which effects his view of the world. Tips the balance in his risk assessments of the world. This could lead to significant mental health concerns and potentially social isolation. Where we are sat currently, we are not a million miles away from that scenario. The triggers – the death of his mum, a pandemic, his teenage years…. He is currently physically cut adrift from the world. His fears and anxieties ramped up to the rafters.

Nothing is set in stone. We just have to go with the flow and see what life brings. It could be still be a fully independent life. But it could also entail a lifelong requirement for support. In this country we don’t cater for the latter scenario. Support has to be fought and won for young children. That support is at best is patchy. During the teenage years the support tends to be reduced due to funding cut backs. By early adulthood the support has completely vanished. That’s a sobering thought for parents in this position. It really is.

Reviews

I want to start this by apologising. With being largely house and garden bound, I don’t get out much. Haven’t got out much since March. So I don’t get to that many different places. That’s why you tend to get the same views in my photos, over and over and over again. One day they will change. Thankfully the changing skies try to help out a little.

Isn’t it nice when you look at reviews for something you are looking to buy and they all agree. It gives you a level of confidence about whether to spend your money or not. But when are we that lucky. Normally it’s five camps of reviews

  • The greatest thing since sliced bread, unbelievable quality,
  • It’s useless, the wrong size, wrong colour, doesn’t do what it’s supposed to do and falls to bits with days,
  • It’s ok but I’m not really sure,
  • Clearly reviewing the completely wrong item,
  • It’s a present for someone so it’s not been used yet……

How can people see the same thing in so many different ways. You end up being even more confused than before.

I’m looking to get a language app. Hopefully one which both of us can use. So covering German and French. I have an old one which is great for learning German words but is rubbish at actually developing my conversational skills. So I’m looking for one that can actually start to make me fluent. Son needs one to help with his homeschooling. So he can learn French. Improve his vocabulary and spoken work. In an ideal world it would be dyslexic friendly as well. So not much to ask for then…..

Rosetta Stone was mentioned by a few people. Yes it’s expensive but it covers both languages and is supposed to be quite dyslexic friendly. So let’s see the reviews. Well it’s either brilliant or useless. Fantastic for building conversational skills or maybe it’s only good for learning individual words. Worth every penny or a complete waste of money. The reviews were no help at all. I guess it depends on the person and what they need. So I’m none the wiser.

So you have to be careful with reviews. Certainly school reviews.

I remember someone asking me about son’s last school. I think I said ‘it’s very nice just a bit rubbish. Disorganised but it’s heart is in the right place’. Bit harsh but I thought it was fair.

Well I looked up the reviews for my son’s current school and it seems to get mostly really high approval ratings. As a parent that would certainly encourage me to send my child there. But then you drill down further. Yes lots of very positive reviews from parents. Comments like

  • Great school,
  • Very good on discipline,
  • Learning focused,
  • Gets results,
  • Responsive,
  • Good teachers,
  • Child enjoys school,
  • Great headteacher.

Still looking great and then you look at the small number of negative reviews. Something then strikes you. All those comments come from parents with something in common. Every single negative review was from parents with children who had special educational needs. Aspergers, Autism, ADHD, Dyslexia, Dyspraxia, Oral and Written Language disorders. Suddenly the comments changed. Now the language was

  • Useless if your child has an Education and Health plan,
  • No support,
  • Teachers don’t care,
  • Unresponsive,
  • Too quick to write kids off who need support,
  • Might as well teach at home,
  • Had to take our child out from this school,
  • Child is stuck in the bottom set and the school is seemingly happy to keep him there,
  • Child is so unhappy.

Sadly this is replicated in too many schools across the UK. It shows the overall school system priorities. Demonstrates the values of the Government. As a country we let down too many with additional educational needs. It shouldn’t be like this.

Sometimes reviews don’t lie.

Wembley

The Yorkshire version of Wembley Stadium. Can you spot the pet trying to once again sneak into the photo.

Even comes with a discerning crowd.

If Aspergers Parenting was a football game, well today feels like we have had a key player sent off….

I always naively assumed that if and when son got an official diagnosis then a support package would be out in place to help with his life chances. How silly of me. I didn’t count on year after year, having to fight the system. Trying to prize just the hints of support from a system which has been hammered into the ground by a Government which only looks after itself and it’s friends. To summarise

  • A school system repeatedly fails kids who do not fit into the factory production line which is the UK school system. Two options, either fight for a place in one of the few special schools or accept your child being bracketed as ‘low attainment’ and consigned to the bottom set. The school will then forget about the child and then pat itself on the back if the child gets just one certificate.
  • Letter after letter, call after call trying to find a clinician who is prepared to look at your child’s case.
  • Passed from specialist to specialist who don’t have the time or resources to add your child onto their case load.
  • Service after service cut by a Government which believes that only the rich should be able to buy access to essential healthcare. A Government that sees Mental Health as no more than an excuse to avoid work. Let’s not forget they described a child taking time off from school after a bereavement as an extended holiday.
  • When you do finally get access to a service you then join the growing waiting list. Finally when your child is seen it’s virtually always by someone new, with no understanding of the back story.
  • Finally your child starts to get older and the few services he has had access to are withdrawn as he is now above the age threshold. You see the Government likes to think that after 13, services are pointless and far too expensive. Adults have to sort themselves out.

We have had three brilliant exceptions to this.

  • A Clinical Psychologist who worked with out son consistently for three years. She even delayed her retirement to ensure son’s diagnosis was officially approved.
  • An Occupational Therapy service that worked with him every few months to help with things like coordination. A service which was cut when he reached 13.
  • A wonderful Nurse Counsellor who worked with our son for 3 years helping with his anxieties and joining the fight for additional help.

We entered June 2020 with just the Nurse Counsellor left from his entire care package. And now the player is sent off.

The Nurse phoned today to let us know that she had been reassigned. She is great and some other kids are really going to really benefit from her time. We are eternally grateful for everything she has done. She is going to desperately try to find another clinician to take over from her. I know she will really try. We may get a replacement. The Nurse was the only clinician he really has connected with. Those connections are rare for him. Making a new connection is going to be tough and most certainly not guaranteed. As the Nurse said it feels like we have lost the progress made over the last few years.

Today feels like one of those tough parenting days. As a friend wrote recently we pick ourselves up, dust ourselves down and start again. We most certainly do. But it feels like it’s a much depleted team taking on the struggle. Forgive me I’ve not used a Lord of the Rings metaphor for a while. It feels like the heavens have opened. The hordes are massed outside the walls and I’m stood alone on the Battlements of Helms Deep. Just me protecting our son now. Doesn’t feel like Gandalf is riding over the horizon in the morning. I’m going to have to just find a way of doing this myself.

I’m off now to kick the ball into the net a few times. Maybe with a bit more force than usual. Then the fight starts again.

Fragmented

Good to see the local motorway is busy…. It’s still too busy for our son. I got special dispensation to step 10 yards out of the front gate to take this photo. Life on the edge.

It really does feel a bit like that at present. On one hand we have what apparently counts as our Government rapidly relaxing restrictions and on the other hand kids like our son….

His social and health phobias are in a pandemic fuelled maelstrom. Every few minutes he feels the need to wash his hands. To repeatedly rinse his mouth out. The fear of germs and hidden dangers becoming a real nightmare for him. He struggles to touch items like taps and handles. Even putting potentially unclean shoes on is a challenge these days. Deliveries have to go into garage quarantine for at least 4 days. Clothes need changing every few hours. And then another spanner in the works. The old house boiler completely failed. So a service call out is required. It’s now way beyond a temporary Dad patch up. That means an additional new threat to sons safe area. A house visitor! After much discussion we agreed a plan. The service engineer would come into the house only via the back door. The engineer must wear a mask at all times. I will keep 2m away from the engineer at all times. When the work is finished we will effectively lock down half of the house. We won’t venture into the areas the engineer visited for three days. Not ideal but it’s a plan. Son’s stress levels will rise but hopefully not too far. The damage to his safe area minimised.

Yet individuals like our son are expected to just re-enter the world by July 4th. The date our part time PM is declaring as the day he defeated the virus. The date he can heroically restart England. It’s perfectly fine to open overcrowded public schools in September. A few more hand sanitisers in the corridors and relaxing the rules further to allow for even larger class sizes to cope with increased teacher sickness is now the best way to deal with a pathogen. We are told ‘everything is now fine’ by the very leaders who have been proven to be wrong on virtually every single major decision they have made over the last 6 months. The very leaders who now widely seen as charlatans and pathological liars. People see this. Our son sees this. This just adds fuel to his anxieties. It’s making a bad situation even worse.

So when England reopens on the 4th July a small bungalow in Yorkshire will not. It stays on lockdown until son is able to face the world again. Who knows how long that will take. Much patience is required. We won’t be the only family facing this prospect. Again my country further fragments. I’m not entirely sure it’s ever really going to come back together again.

End Game

The way forward is shrouded in mist but a clear route is emerging.

As we move into the second week of the Year 8 exams we have a clear state of play emerging. Son is trying his hardest, school clearly is not. Son again was upset this weekend as he clearly thought that school sees him as not very bright and a failure. He found out that he came third bottom in his Drama exam. Well was that surprising when he was given only a short period of time to read questions then an equally short timescale to write answers. Absolutely no help was provided. So clearly autism, dyspraxia and dyslexia do not apply in the world of Drama.

Sadly this has not been an isolated incident.

  • In subjects like Mathematics, Design Technology and French he received zero help. No additional time. No help with reading. Nothing. Maybe help was considered but as Son pointed out

One of the kids broke his hand so the one Teaching Assistant had to scribe for him. Maybe that’s why I didn’t get help. I really struggled to read and understand the questions. Even maths had lots of words I didn’t recognise in the questions.”

  • History did not proved a scribe but he was given a laptop to type his answers in. So he still had to try and read the questions. He was given a laptop because the teacher was concerned about being able to read his handwriting. Problem is that son is waiting for some therapy work to try and help with his typing skills. His typing is slow and very inaccurate. He hadn’t practiced answering test questions on the computer. The computer also had the spelling aids disabled. No additional time was provided.
  • Science and English did provide a scribe. He hadn’t practiced working with the scribes provided. He was really uncomfortable trying to work with the two assistants he had previously had very little interaction with. He had thought incorrectly that he was getting extra time but with a couple of minutes to go the scribe just said the exam is finishing when it’s 10.15. He struggles to tell the time using an analog wall clock. The scribe in English only read out the questions. She was not allowed to read out the passages which he had to answer comprehension questions on.

What was the point. The scribe would tell me things like for this question you need to read lines 5 to 12 of the text then describe what writing techniques the author has used. Well I would if I could actually read the text. Some of the text was using slang language – I struggle with proper language, got no chance with slang.”

So basically it’s been a mess. If his marks are not good then this is going to hit his confidence going forward. Currently school are deadpanning my queries but I guess they will just say that appropriate support was provided and he just needs to work harder. Poor results will confirm their assessment of low attainment. I just hope for his sake that he manages to get some decent marks. I’ve told him that for me it’s not he who is being assessed, it’s school. And clearly school have failed – AGAIN. To quote a reasonably popular movie, it feels like that we are moving to the mainstream education END GAME. No we still can’t truly afford to homeschool but this failure of due care can’t go on. Son deserves better than this.