Posted on by bereavedandbeingasingleparent · 90 Comments

Patience needed

Again a bit of a shout out to the Yorkshire Wildlife. News of my oh so slow mobile phone camera focusing system has got out. Another kindly soul hung upside down long enough for a focus of sorts. Thank you.

As son was happily perched in front of the TV watching a Pokemon movie I took the opportunity to take the pup for a walk. Hence the photo above. It was a short walk, no more than 15 minutes. When I got back home son was not there. Clearly he had gone looking for me. Before I could get out of the door he returned. He has gone looking for me in his bare feet. That indicates the level of the panic attack.

That’s why the school holidays will be based around me and my shadow – or better the other way round. He lets me into his world and that is the coolest thing ever. Now brief solitary dog walks are out then its unlikely we will be separated over the next 6 weeks. I suspect many parents will experience a similar feeling.

Opinions differ on the future. One of his Paediatricians said

“He will eventually grow out of this clinginess. In a few years you will have to face getting your life back on track”

However one of the best clinician I have come across (unusually a caring expert in autism) argued

“He may learn to have a level of independence. However I think the balance of probability is not heading in that direction currently. You should prepare for a life long parenting commitment.” – that was when we had two Parents and two Grannies (now it’s just me)

For me this raises 3 fundamental issues

  • What’s the Plan B if something or when something does happen to me. It’s not a straight forward problem as my brother and sisters are at least 10 years older than me. Practical options are a tad limited.
  • As he gets older the minimal support he gets from the state will disappear. Sadly that’s just how it is. It is not viewed as a priority. Let’s face it – clearly it’s not as important as something like funding tax breaks for the rich. REALLY. As a society we should be better than this.
  • Everyone is different and I have come across examples of wonderful individuals on the spectrum who are successfully keeping down full time jobs. But the evidence suggests that a fundamental problem all too frequently exists. Many on the spectrum struggle to keep down full time jobs. I have seen stats which indicate the Autism unemployment rate can be as high as 85%. Some will be fully dependent on full time help for life. Those parents are unbelievable heroes. I am in complete awe of you and the daily sacrifices you make. I have read a number of Aspergers stories recently of people who have developed levels of independence and who have tried to work. The message was hauntingly similar. Countless jobs started well but they started to struggle with time keeping, office politics, social interactions and multitasking. Office small talk was alien to them and they became isolated. Eventually they became ostracised or the butt of colleague jokes. Employers seemed oblivious to the issues surrounding autism in the workplace. Anxiety and Depression kicked in, sick days started then the job was gone. Cast adrift again in the alien world without any support.

Every person is different. Things can work out well but they can clearly also go badly. I need to get my head around this and start preparations now. This could be a lifetime project. Which brings me to one last thought. Last week someone said to me

“Your still relatively young. It’s such a waste. You just need to get through the next few years then he will have his own life and you can start living yours again.”

Currently that outcome is not part of my plans. Years ago I had personal dreams but now they are gone. They went with my partner. I’m here now to do a wonderful rewarding job and I will give that my best shot. In the end that’s what any decent parent would do.

  • Posted on by bereavedandbeingasingleparent · 67 Comments

    Wow he’s got a funny shirt on

    Dad are you going out in that T-shirt. I wouldn’t be seen in that.

    The look the cow gave me I think indicated a similar interest in my attire. What is so wrong with a bright yellow T-shirt which has a photo of a reasonably well known TV personality on the front.

    Don’t see a problem myself…..

    On the walk we bumped into a family coming the other way. I had a quick chat with them but quickly realised son had pulled his hood over his head and was basically hiding behind a bush. So we headed off promptly. Social interaction just doesn’t come easily for him. Unplanned encounters just freak him out especially if they involve other kids. He hates the thought that people are looking at him. He hates having to make eye contact. He is never sure how close he should stand. He gets anxious when he has to stand still. He is convinced that only a few people get what he’s talking about.

    I could tell this encounter had bothered him. Possibly he was a little embarrassed. He has spoken in the past about being a little ashamed that he could not handle chance meetings more confidently. All you can do is reassure him and tell him to be just himself. Being himself is just perfect. Counselling was having a bit of a positive impact on his confidence but that has dried up now. We work on breathing and anxiety control techniques. Occasionally I try to get him into carefully controlled new situations. The Holy Grail would be a club in one of his interests areas.

    Hopefully one day he will realise that most of us are like this somedays. It’s called being human. But it’s now time to get him smiling.

    “I hadn’t realised my shirt was so embarrassing that you didn’t want to be seen with me. Clearly it’s not a cool look. Good job they didn’t see my Peppa Pig pants”

    Tell me you haven’t.

    I think my smile gave the fib away and he started laughing.

    Do you think they noticed anything unusual about me.

    No too busy thinking what a pillock your Dad looked like. Shall we go home and see if we can find a couple of cider ice lollies.

    I suspect we will be on lockdown at home for a while now. That’s cool. It’s what he probably needs at the moment. And anyway who needs the outside world. We have a trampoline, we have a football goal, we have a DVD player, we have a Peppa Pig DVD (maybe scrap that one), we have jelly and we have our imaginations. What more do we need.

    Posted on by bereavedandbeingasingleparent · 96 Comments

    Priorities

    The U.K. newspaper the Guardian ran an article today on how Special Needs Education is breaking Council budgets. It’s underlying argument is that as special educational needs are growing the Government is simply burying its head in the ground. As our son is one of the 354,000 mentioned in the article it feels very pertinent to what I’ve been waffling on about for months. We live in times when Austerity reigns supreme. Even the Special Education Budget is seen as an increasingly easy target for cuts.

    The Government and our soon to be gone PM are very keen to stress that money doesn’t grow on trees. But surely it does. How else can you explain these little facts.

    • When the current government failed to secure a majority in Parliament it needed a new friend. Friends don’t come cheap. The Government found an additional £1Billion in funding for Northern Ireland budgets which was enough to buy the support of the DUP party. Basically money appears if it means keeping the PM in a job.
    • The Government decided that due to Brexit we needed more Ferry capacity. It unbelievably awarded a £14M contract to a company that had no ferries and had never run shipping before. Basically £14M down the pan.
    • £14M wasn’t enough for this Government so they decided to ignore Procurement Rules in the award of the Ferry contract to a company that doesn’t have any ships at all. So they got challenged by another company. To avoid an embarrassing trial the Government paid another £33M out. That’s a lot of money for no Ferries especially when Brexit was delayed so we didn’t need them anyway.
    • Not quite finished yet with Ferries. The Government paid just under £1M to have Private Consultants assess the viability of a Ferry Company that had no have Ferries. You couldn’t make this up.
    • £67M per year spent on the Royal Family.
    • The Government spent £13M on consultants over two months in a failed attempt to get MPs to back the PMs doomed Brexit proposal.
    • Over £2B has been spent on planning for a no deal Brexit.
    • The Government spent £4M on advertising to try and promote its discredited Universal Credits Policy.
    • Every year taxpayers fork out just under £1M for the PM to use the Chequers Country Estate.
    • The previous Government cut the very highest tax rate from 50% to 45%. This has cost over £8.5B.
    • The Government spent £9M on a leaflet promoting the dangers of Brexit. Now essentially the same Government is promoting the benefits of Brexit.
    • Money is tight but the Government found £55Billion to essentially build a vanity high speed train set through some of our countries finest countryside.
    • £14Billion to build another runway at Heathrow. Bugger the environmental costs. A policy so mad that even the king of buffoonery Boris Johnson said “I will lie down in front of those bulldozers and stop the construction of that third runway … Heathrow is just undeliverable, and the sooner we face that the sooner our salvation“
    • The previous PM wanted his own Air Force One. So we spent £10M on one. The funny thing is that Cameron only got to fly on his plane once before he resigned.
    • Although money doesn’t grow on trees money was found to put adverts on vans and in newspapers telling potential illegal immigrants to Go Home. They then found another £200000 to pay for a study to show how good the idea was.
    • Every year Taxpayers are paying £3.7M subsidising our MPs and Lords food and drink cost when they are in Parliament. I’m still waiting for my food and drink to be subsidised.

    I could go on an on but I hear you cry no more.

    So the bottom line is money is available to the few when it’s needed. Sadly that does not apply to the 354,000 kids with recognised special educational needs and the countless thousands who fall through the system.

    We live in hope of change. Unfortunately hope or change is not the middle name of the two chaps competing to be the new PM. They live in a different world

    • Jeremy Hunt regularly earned dividend of over £900k per year on top of his Cabinet salary. He later sold a company which earned him £15M.
    • Boris Bozo Johnson said that his cabinet salary of £141,000 was not enough for him to live on….

    So no hope here then. But one day a revolution will come. We will start to get our priorities right and our society will start looking after the many and not the few…

    That’s probably got me blacklisted on the American Visa system now and will certainly have pissed off several million in my own country…..

    Posted on by bereavedandbeingasingleparent · 57 Comments

    Brevity

    If I tried to describe these two photographs I suspect I would waffle on for two or three paragraphs. Vibrant colours. summer, natural, wild, rugged, course, memories, wildlife, whistling wind, pastel greens, deep reds, rebirth, life cycle, arcadian , sustainable farming, ruminative, pain of war…..

    And when I asked our son his description would be

    “Flowers in a field”

    You get the picture I waffle and he speaks with brevity.

    It was an interesting power struggle at school this week. English was all about informal forms of communication. In particular how to write postcards when on holiday in Spain. Clearly the teacher was looking for postcards in the style of Wordsworth, Keats or Shakespeare. Encouraging the use of words like Majestic, Glorious, Wonderments, Shining, Gleaming, Culturally Enrichments, Golden, Redolent, Effulgent.

    Son clearly was in a different narrative time zone.

    1st Attempt. Hi. In Barcelona, look it up on the internet, Goodbye

    2nd Attempt. Hi. In Pretty Barcelona. It’s got a great football team, Goodbye

    3rd Attempt. Hi. Still in Barcelona it’s better than Madrid, Goodbye

    Final Attempt. Hi. Barcelona is still in Spain and it’s still better than Madrid. Will phone you on my mobile so not sure why I’m sending a postcard. Goodbye

    Luckily the teacher could see the funny side. She could also see the impact of Aspergers and Dyslexia here. To him a stunning deeply evocative blood coloured red flower is in fact a Pentas lanceolata. His bottom. line is let’s just get to the point and less words mean less Dyslexia struggles. Can’t argue with that.

    Posted on by bereavedandbeingasingleparent · 46 Comments

    Eyes wide open

    It’s amazing what you find when you open your eyes.

    Another application for additional support. This one was a long shot. Additional funding to provide some specialist support in school for our son. Turned down.

    Same line. He already has funding (the maximum available with an Education Health Care Plan) which allows him to take up his place in school. The funding goes into the general support budget which funds the school wide teaching assistant system. Plus he’s doing so well without support.

    The fight goes on.

    Then speaking with his Doctor. Son is now starting to become too old for many of the health programmes focusing on autism.

    The fight goes on.

    It feels like the agencies have signed up to support our son while he is in school or college up to the age of 25. The agencies provide virtually no support now. They will continue to provide virtually no support up to the age of 25. Then they can officially provide no support after that….

    Ultimately the agencies are just following Government policy and funding decisions. The current government sees austerity and cutbacks as essential for health and education. Yet they are happy to provide funding for tax breaks for the better off and bungs to Northern Ireland Unionists to keep themselves in power.

    Nothing is going to change any time soon.

    So the fight goes on. But one day the government will change and hopefully we will get one which governs with eyes wide open.

    Posted on by bereavedandbeingasingleparent · 75 Comments

    Ricky

    Meet Ricky the newest member of the gang. He’s made an appearance before when he started burying his nuts in the lawn over winter. But now he has started coming for his lunch. Happily feasting next to the birds. He (or she) will be a welcome friendly face going forward.

    We are just over a week from the start of the summer holidays. Six weeks of immersing myself in our son’s world. It truly is a privilege. A wonderful mind trip. Happy parent.

    I bumped into a parent from his current school. They have the holiday mapped out. Immediately they break up they are going to a music festival for the first weekend. Then the kid is going on a football course for the first week. Then they fly out for a two week beach holiday in a popular Spanish resort. They come back and then the kid is off camping with the scouts. A couple of trips to fun parks and family barbecues are then followed by a family week in Paris Disney.

    Asperger/Autism summer holidays can be very different to this. Ours is. For a start we are limited by finances. Our summer holidays are long periods of house lockdowns briefly punctuated with carefully selected trips to places without crowds. This means early day trips to places like Zoos – trying to cram as much in as soon the venue opens and leaving as soon as the crowds start to build. For his favourite zoo that means arriving at 9am and probably leaving around 10.30am. Trips to the cinema will be to the 8.30am screenings. Locations will be carefully planned so that he feels comfortable there. Walks will be in very remote and largely unvisited areas.

    A trip to Switzerland would have been an option (he is comfortable there and the journey is familiar having done it a few times) but we just can’t afford it. Plus he is more comfortable going during quieter periods – April/October. And we haven’t tried it since his mum left us – will it ever feel the same.

    So our summer holidays will be quiet and largely cut off from the outside world. That would worry me in the past. The real danger of becoming increasingly introverted over those weeks and losing any social confidence which I had struggled to build up. This year it doesn’t really bother me. Yes I might become more introverted but its not as if I have a full social diary. Introversion and isolation is the new me. I can focus on our son and see what adventures we can weave – I’m sure Ricky will play some part as well.

    Posted on by bereavedandbeingasingleparent · 53 Comments

    The squirrel needs to wait

    Today I was planning to write about a squirrel. But at the last minute I’ve changed my mind. Maybe tomorrow…

    The Guardian (one of the UK’s better newspapers) ran an article today about autism.

    It’s upsetting’: the autistic music fans being shut out of gigs

    Its a really interesting read and covers some really important issues facing those on the spectrum. If you have a spare couple of moments I encourage you to read it.

    One thing the article is spot on about is that as you get older the support systems fall away and you seem to be left to sort yourself out. It’s so frustrating. You spend years fighting to get your kid diagnosed. If you succeed then you again fight to gain access to services. Hopefully you do get access and then suddenly your kids are getting to an age when the system decides to cut them adrift. It is just wrong.

    The article got me thinking about our circumstances. Why does our son enjoy rock concerts yet often struggles in other crowded events. Having talked it though with our son I think we can almost answer that now

    • We only go to venues he knows and feels comfortable with. If we have to go to a new venue we go to see it in the daylight. If you speak really nice to the venue admin they will often accommodate a pre visit to allow you to acquaint yourself with its layout
    • He loves the drama, the noise, the lights. It’s a short fix of sensory overload on the same level as a scary rollercoaster ride. He controls it. If he’s not happy he knows that we can just get up and leave.
    • He loves the way you can wear whatever you want, do whatever you want to your hair, dance, sit, stand, sing, shout, drink, eat – yet no one seems to care. No pointing fingers. No funny looks. No questions. He feels like he can fit in there.
    • It’s so noisy. Too noisy to talk much. He is relaxed as he knows no stranger will talk to him. He still has an element of isolation.
    • He likes the thought that he is doing something which many of the other kids at school don’t do. It’s his hobby.
    • And finally let’s not forget that he just loves listening to Rock Music

    Another point the article raised is whether you consider autism as a disability. Because of his diagnosis he is listed in the UK as disabled. Son hates that. He is clear – Autism is his personality not his disability. He does talk about dyslexia being his disability. His invisible disability. One which people see when they want to and ignore when he needs help.

    Whether you want to call it a disability or not for me that’s up to personal circumstances. It’s called a spectrum for a reason. Everybody is different. It’s unlikely you will find two specific diagnoses which are the same. The article is right about access. It’s at best patchy and yes some simple changes can open up opportunities for more people on the spectrum. But it is difficult. We went to a Autism friendly hour which our local Toy-r-Us ran a few years ago. It was much more inviting and yet our son did point out that

    “If they want to make this completely Autism friendly they should allow us to book slots so we get the shop to ourselves without anybody else here”

    One final point. The article talked about earplugs. They are essential but please manufacturers, given my unfortunate incident with one, can we make them edible….

    Posted on by bereavedandbeingasingleparent · 81 Comments

    Odd day

    It’s been an ODD day.

    Work warned me that today was likely to be beyond busy. Yet I didn’t hear a thing. Finally I was stood down with nothing to do. Not good for the bank balance but at least I could go for a walk

    On the walk bumped into a few people but clearly being pleasant was not high on their priorities today. An encounter with one dog walker summed it up perfectly. Her dog ran up to me and jumped up. I bent over and gave the happy little dog some attention. When the owner arrived she curtly told me not to stroke her dog and walked off. Most odd. Then.

    I got to my favourite hay bale.

    It’s gone… The other bales are still there and it’s not even been moved across to join them. I sadly counted them. I’m going to miss that bale. Got quite attached to it. I wonder if the farmer will think I’m odd if I ask him where it’s gone.

    On the way back home I stopped off at the local village shop. Here I bumped into a dad whose boy was at our sons last school. Almost straight away he said

    “I didn’t realise your son was Autistic. I only found out yesterday when it was mentioned at school. Has he just recently gone down with it”

    I tried to explain that you don’t really go down with it. It’s a life long condition.

    “Probably explains why he always appeared a bit odd to me”

    Fighting the urge to relocate this mans head from his shoulders I did bite back just a tad. Pointing out to him that it was a bit rich coming from someone who liked to wear his designer shades even when it was raining in winter. Someone who was the only parent who objected to the school sending the kids on a educational trip to the local mosque. Someone who demanded a teacher be sacked after he told off his son for cheating repeatedly at sports day. And someone who was a monumental d*******.

    Needless to say we didn’t part on great terms… an odd encounter

    Son came home to tell me that his class ran late so he only got 10 minutes for lunch as a result he didn’t have any lunch. Odd how no food for 8 hours can be seen as creating a positive learning environment.

    The day finished off with a viewing of the Fighting the Family movie. The story of Paige the WWE wrestling star. After it had finished our sons on the spot review was

    “Paige is great. It is so sad that she had to retire at 26. The film was really good but oddly remarkably awkward in places”

    Yes it’s been a very odd day.

    Posted on by bereavedandbeingasingleparent · 69 Comments

    Roses

    The rose I bought for my partner just before she left us has sprung into life. Wish she was here to see it.

    I finally shamed myself into sorting out the garden jungle. Maybe not immaculate but certainly almost passable. Suddenly we have flowers and roses. I had forgotten how many roses we bought before the world changed.

    I remember the day we finally got our son’s medical diagnosis signed off. It was a bit of a journey to the Hospital so we stopped off at a garden centre for something to eat. They had an offer on roses and I bought one – think it was the deep red one.

    We didn’t know for sure that we would get things signed off. Had so many false dawns. The diagnosis journey had been a nightmare and beyond frustrating. Finally we were lucky and came across a really good Consultant.

    He added to our son’s medical record official confirmation of Aspergers, ADHD and DCD. When I asked what the hell DCD was the Consultant smiled and said something like this

    “Its the new fad abbreviation and current hip term for Dyspraxia. If it’s OK I’ve used Aspergers rather than Autistic Spectrum. We are supposed to stop using the term Aspergers but not on my watch. I suspect it will always stay as Aspergers on his medical record. If it does change it really won’t have any impact. It’s just Semantics. He is also Dyslexic. In the old days I would have added that to his medical record today but I am not allowed to now. The diagnosis has to come from Education now. Unfortunately that is like getting blood from a stone. It’s a disgrace”

    He explained that you can get Dyspraxia on its own but normally it normally coexists with other conditions. Frequently with Aspergers and Dyslexia.

    Today he is sometimes listed as having Aspergers and sometimes Autism. Sometimes he has DCD sometimes he has Dyspraxia. At least we have agreement on the wording for ADHD. Whatever the terminology the various strands interlink and makeup who our son is.

    Six years later and we are still fighting Education on the Dyslexia diagnosis. That is the one strand which we see as a limiting factor. It holds him back. The good Consultant has retired and our fight goes on.

    Posted on by bereavedandbeingasingleparent · 86 Comments

    Don’t look

    If I don’t look will it go away…

    Today in the post we got a Car Tax Reminder. Also the final notice for the House Insurance. That adds to the pile of bills on the desk. If I don’t look at the bills will they go away…

    The side panel on the car is coming loose. If I drive over 30mph it starts to knock. The car is covered in a layer of mud – it should have a beautiful complexion when it’s cleaned. The inside of the car resembles a skip. If I don’t look at the car…

    Son badly needs a haircut. It’s a combination of Shaggy and Cousin It. His school clothes are a little small for him now. Its the great end of school year parent dilemma – pay for new ones or battle on with the old. If I don’t look at his hair and his school uniform…

    The chimney pot has a plant growing out of the top of it. When I say plant it’s big enough to be a sapling. No idea how I will get onto the roof to deal with it. If I don’t look at the roof…

    On the desk I have another report to complete for our son. 32 pages. 52 different questions. Health and Education evidence required. If I don’t look at the report…

    The garden looks like a jungle. A really unkempt one. The grass is that long the dog now disappears when he goes out for his morning constitutional. At least it hides the fresh mole hills. Nettles have taken over the borders. The weeds under the trampoline are now touching the mat. Could make the next bouncing session interesting. If I don’t look at the garden…

    The washing is piling up. I always wanted to climb Everest. Well at this rate I might get the opportunity. Ok I probably imagined a slightly less wiffy Everest and one with not so many sock avalanches. If I don’t look at the washing…

    The house is a battleground. Most of the curtains have been shredded by the cat(s). When I say curtains I could say sofa, beds, chairs, wallpaper, carpets, cushions. Most of the wood in the house has been chewed by the dog. Given the amount of wood in the house it kinda makes a dog heaven and a house which is becoming increasingly structurally unsound. Thats before we factor in the agents of doom – the Gerbils. If I don’t look at the house…

    If I don’t look will that mad dog stop looking at me…