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 · 56 Comments

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.

Posted on by bereavedandbeingasingleparent · 50 Comments

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.

Posted on by bereavedandbeingasingleparent · 70 Comments

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.

Posted on by bereavedandbeingasingleparent · 67 Comments

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.

Posted on by bereavedandbeingasingleparent · 101 Comments

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.

Posted on by bereavedandbeingasingleparent · 69 Comments

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.

Posted on by bereavedandbeingasingleparent · 76 Comments

Two quotes

“I AM DIFFERENT NOT LESS” – Dr Temple Grandin

Another week we dust ourselves down and go again. Although the route is still shrouded in mist and we face countless dead ends – we must keep going. If not for me but for our son.

A session with a new health professional. Always a good sign when she does not ask me what I want, she asks our son. The health professional is going to contact school to see what work they have undertaken to help with our son’s handwriting. Assuming school has done nothing and has no plans to do so (which we believe is the position) then the health service will start a programme to help with his writing. This will be the first time in three years work that son will have had specific help with his writing. Let’s see what progress can be made, what writing aids help. If progress cannot be made then that might be the time we start to move away from pen and paper to keyboard and voice recognition.

So we start down another path.

These are the specific areas son asked for help with

  • Handwriting
  • Shoelaces and Ties
  • Holding objects like handles which require two hands.

Interestingly he sees Aspergers as who he is – his personality. Aspergers is not a label just him. However he now sees himself as not dyslexic.

The fact that I can now read some of the words and can mostly guess the rest means I’m not dyslexic. Now I’m just not very good at reading.

I think this recent view of dyslexia is down to school. Firstly school sees anyone with dyslexia as low attainment. Son hates being branded as below average. As a result Son sees dyslexia as an unwelcome label. Secondly the label dyslexic brings him no additional help from school. Whats the point of referring to yourself as dyslexic if it brings no support benefits and only results in being automatically branded below other kids in the class.

The bottom line is the school system has failed him. It has failed too many kids. That’s one of the reasons you read so many cases of great individuals who have decided to hide their dyslexia. Kenny Logan is a Scotland Rugby legend playing 70 times for his country. He choose to keep his dyslexia secret. From his team mates. Even from his wife. Only at the age of 34 did he finally seek help. On what planet can this be allowed to happen. So much wasted talent and opportunities. So much stress and suffering. This is nothing short of a disgrace.

I started with a quote and I will finish with one. One from our son

When someone has a disability your not allowed to discriminate against them. If your in a wheelchair you shouldn’t have to put your hand up for help. So why is it that when someone has an invisible disability you can be ignored and that you have to say ‘Please will you help me’ and when they ignore you it’s not discrimination.