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 · 87 Comments

Speaking

I have always hated speaking. It’s fine if I am amongst friends and people I trust. But put me in front of strangers then it becomes a completely different ballgame. I have to find ways to get through it. Ways to avoid tripping over words. Trying to stop the stammering returning. Public speaking becomes a mechanical task which needs a process. I significantly cut down my vocabulary range. I never use a planned written speech (I just can’t find any rhythm when I’m speaking from prepared text – I even struggle to read a book aloud). I plan and memorise the first two lines that I will say. I work out exactly how I am going to greet someone. I never make direct eye contact, rather I tend to look at eyebrows or foreheads. Even then it’s a bit of a lottery. I’ve delivered a perfect conference speech to 500 yet completely collapsed in front of just 2 people. I guess the secret is to try forget about the inevitable mistakes or just smile at them.

I remember speaking to the medic who mentioned the word Aspergers first in connection with our Son. She was an autism expert – one of only two we have ever met, which is kinda scary. Anyway I remember her saying something like

I suspected that he was on the spectrum almost immediately. It was the way he walked into the room. They way he struggled to sit and make eye contact. He confirmed my diagnosis as soon as I heard him SPEAK.

Son was very like me in that he started to talk pretty late as a toddler. As soon as he did start talking then his vocabulary rapidly expanded. At nursery he was absolutely flying with his speech. But then at about the age of 5 he started to struggle with a number of factors

  • His speech suddenly become extremely monotone,
  • He would either speak far too quietly or far too loudly,
  • He struggled to pronounce many sounds correctly,
  • He would always get the use of plurals wrong,
  • He was definitely using language which was well beyond his age.

The final one was not a problem but it did lead to some amusing incidents. In his first year at school the class was about to start a series of lessons trying to teach the kids about animals eventually after a number of weeks leading to touching on evolution. Within a couple of minutes of the first lesson our boy put his hand up and then proceeded to explain evolutionary theory to the class. The lovely teacher said she had to later go and look up some of the terminology he had used.

But as the months went on his speech issues became more pronounced. Eventually his Aspergers Expert managed to arrange speech therapy for him. Slowly the therapy started to work. Certainly his pronunciation and his control of his voice levels improved. Unfortunately after 6 months the speech service was cut by the Government to save money. It’s never restarted. The therapist gave us a number of exercises to practice but did leave us with a message

Constant practice will help manage any speech issue but they won’t solve them in your son’s case. They will be underlying for the rest of his life. They may become more pronounced as he gets older. He needs to develop his own way of coping with that.

That’s where we are today. He still can’t get his head around plurals. He is still struggling to pronounce certain sounds. No help is available for him. But rather than trying to cope with the issues, it’s more about him developing his own unique communication style. One which suits his personality. That approach I’m pleased to say is working. The other key thing is to stress that we all struggle with speaking at some stage. It’s nothing to be ashamed about. It’s who we are. It what makes us unique.

Son always likes to hear one of my most embarrassing speech incidents. I have a niece who when she was very young would not say big or large, rather she would have to say really really REALLY big. That was pronounced wheelie wheelie WHEELIE big. Anyway many years ago I was delivering the organisation’s annual report to The Council. Representative of the Government was there as was the local press. Talking about the financial position I meant to say

In terms of of our Operational Budget and our Tax Revenues we have a significant underspend.

Unfortunately that was delivered by this prize muppet as

In terms of of our Operational Budget and our Tax Revenues we have a wheelie wheelie wheelie WHEELIE big underspend.

Not sure that key message was delivered with quite the gravitas I was hoping for. Still at least we can laugh about that now….

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.

Posted on by bereavedandbeingasingleparent · 89 Comments

The Golden Ticket

It’s amazing what you come across on a daily basis. You get good discoveries that just make you go ‘wow’. The ones you can look at for ages and get a sense of wonder.

Then you get other discoveries which make you go ‘wow’ for entirely different reasons.

Today I came across a headline in one of our so called better newspaper – The Times.

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“Pupils lose out as £400m schools funding diverted to special needs

Children have been losing out because millions of pounds earmarked for their education has been siphoned off to pay for special needs education, an investigation by The Times has found.

A surge in pupils categorised as having special needs has led schools to lay off staff, increase class sizes and cut back on subjects as councils raid mainstream education budgets to fund support for them.

One headteacher said that the funding reforms introduced in 2014 created a new education, health and care plans that were seen by some parents as golden tickets”

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Don’t try to read the article as you have to pay Murdock for the pleasure. No free news here. Where do we start with this article from the Rupert Murdock stable.

  • Am I missing the point here but surely SEND (Special Educational Needs and Disability) kids are pupils as well. My son is a pupil surely. Not according to this newspaper. Clearly The Times would like to scrap inclusion and go back to the good old days where too many kids where denied the opportunity of mainstream education. The Times journalists have an underlying principle to most of its commentaries. Well if I don’t need that support so why should we be paying for it.
  • This article is likely to cause some parents to start resenting and blaming SEND kids for school problems. It’s pouring fuel on the fire of resentment and bullying. Basically what this article is saying is the those SEND kids are robbing Normal kids. It is deeply irresponsible and distasteful journalism.
  • The article doesn’t mention the 1500 SEND kids who are unable to find a mainstream school that will accept them. But it according to this journalist – that doesn’t matter as they are not pupils.
  • Blaming SEND kids for the £400m short fall in school budgets is lamentable. Clearly according to The Times this countries crisis in class sizes and falling teacher numbers is purely down to SEN kids. Let’s not mention that school budgets have been severely squeezed as a directly consequence of Government funding cuts. Let’s not mention that this Government introduced a new assessment system but refused to fund that change, That’s the very Government this newspaper supports whole heartedly.
  • This country has had a crisis in SEND school funding for years. It is chronically underfunded, it has always been chronically underfunded. Recently it has been subject to further Government cuts. No mention of that then.
  • A surge in pupils categorised as having special needs. It makes it sound as if suddenly parents are inventing SEND symptoms. This country has an estimated 350000 kids with a learning disability. Most experts say this is a fraction of the actual number. So many kids go through education without having a learning disability diagnosed. For too many years we have failed to address this educational crisis. This is going to get worse as a direct consequence of Government Policy as the criteria for SEND diagnosis is becoming stricter – purely to save money and not based on any health grounds. This is at the same time that funding cuts are resulting in longer wait times for an actual diagnosis to take place.
  • Finally ‘a golden ticket’. Really. In our case it’s the reverse of the article. The funding which has been awarded to our son for his learning disabilities is being used to part fund Teaching Assistant support for the whole school. The article also fails to reference that most SEND parents are already paying for additional care and educational support. This so called Golden Ticket only covers a fraction of the true cost of support.

Once again journalism gives us an insight into the deep rooted problems we have in society. The media reflects the current views of our so called Governments. It shows how far we have to go. How difficult this fight is going to be. I will leave the last word to my old Dad. He would call The Times ‘excellent toilet paper’. Thats all its good for.