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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.

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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 · 36 Comments

Earplugs

Keep getting asked about the edible ear plugs that appeared in the last post. The Earplug incident happened last year and was mentioned in the Vampires post.

Basically on the way back from a concert I got the munchies in the car. Tried to feel around for a sweet and came across something promising. Unfortunately that promising sweet was our son’s freshly used ear plug. Very chewy…

Laughing about this with our son this morning. Then we decided upon an invention to prevent this unfortunate incident happening to someone else. Why not have ear plugs that automatically self destruct when you take them out. Mission Impossible have been using that tech for years. What could possibly go wrong…..

Then son pointed out the obvious. Why stop people eating earplugs … just make them edible.

So off we went. What food could we use as temporary ear protectors.

  • Carrots – maybe the miniature ones could work. They might even do a bit of ear wax removal at the same time
  • Blueberries – right size but a bit squishy
  • Bake Beans – good size but maybe a full tin might be a bit of overkill
  • Smarties – would melt surely
  • Jelly Babies – maybe one or two ethical issues
  • Bread pieces – wouldn’t last two seconds with the local Seagulls. Plus I’ve seen Hitchcock little family movie – Birds….

Then son killed off the debate. Why don’t we just use miniature marshmallows. Same shape, same size and so much cheaper than ear plugs. When we see Kiss let’s see if we try them out.

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 · 79 Comments

Moody

Moody skies. In the distance a Buzzard is being chased off by two Crows. That sort of distance shot is way beyond my old mobile.

I keep saying it but grief is really pesky. It likes to sneak up on you. Even after more than two years it still does. Of all the sneak attacks one always hits the hardest. It’s when you momentarily forget what has happened. You only need to forget for a few moments and then wham – grief slaps you in the face.

The same thing has happened time and time again to me. I’m driving towards our house. I look up and see no car sitting on the drive. I immediately think that I’ve beaten my partner home today. That means I can ….. Then it hits you. She’s gone. It’s the most soul destroying feeling. Absolute desolation. The shock literally takes your breath away. You then have to enter a house which is so full of memories. It really does take quite a while to get yourself back on an even keel.

It happened again today. No car on the drive. Beaten her home. I can get the housework done before she’s back. Maybe even get a mushroom stroganoff on the go. Her favourite. Then it hit me. Bugger… Even with a mad dog the house seemed really cold and colourless. So empty. It wasn’t supposed to be like this.

But it is. Got to make the best of things. Just have to accept that grief is the new reality. But I can keep going. I try to see grief as sitting by the seashore. Sometimes the tide comes in. Often the waves are tiny and you hardly notice them. But every so often the tide comes in with force and the waves crash over you. It’s a full on storm. But I tell myself to breath and eventually the tide has to retreat. It really has to. And I do realise that I am so fortunate. I have a purpose to drive me on. Give our son the best childhood possible.

But still I could try and hire those two birds in the photograph. Maybe they can keep watch for grief and then chase it off when it comes hunting. That really would be something to crow about.

Posted on by bereavedandbeingasingleparent · 98 Comments

Oh come on…

Stood watching the sunset. Two thoughts crossed my mind.

One… what a stunning sunset. Developed without warning and only lasted a few minutes. It’s the sort of sunset that would have made my partner so happy.

Two… bloody hell my fingers hurt.

You get towards the end of the school year with the once extensive school uniform reserves drained to drought levels. Down to one of each item and they have seen much better days. Sizing is probably about two sizes to small and really they are just a collections of holes held together by a few resilient fibres. Just got to make them last two more weeks. That reminds me – I had better start saving for next terms uniform replenishment. Bet that’s cheap!!!

It maybe only two weeks but you can almost see what’s left of the clothes disintegrating in the air. It’s time for drastic action. It’s time for emergency patching. Unfortunately sewing comes as naturally to me as veganism comes to Donald Trump. I am useless. Always have been, always will be. Up to two years ago that wasn’t a problem. My partner loved darning and out would come the sewing box with such glee. My mum was also an expert in the dark sewing arts. Those days have gone now.

So now it’s down to me. Houston we have a problem. So out came my partners sewing box. A result a couple of useable patches ready to go. How hard can this really be. So a fine looking needle was selected. Several different types of thread to go for. Helpfully each has a number 60, 70, 75, 80 – what the hell does that mean – is it size, age, weight, tensile strength. Let’s go for 60 as it’s black. We then start to put the thread through the needle eye. T***, f***, s***, b******, buggerations. I might as well of been trying to give a cheesed off Honey Badger a haircut. One hour it took me, one hour of my life wasted on that instrument of torture.

Then I started to attach the patch to the trouser knee hole. The sodding thread falls out of the needle. So we start again. Two coffees later we have a needle and thread ready to go again. Now the needle won’t go through the patch. What is it made of – bullet proof armour. Eventually I punch through but with so much force that the needle eye has embedded into my finger. Blood everywhere. After a plaster has been applied I continue. Not once, not twice maybe six times the needle struggles to get through the patch but once through it passes through my finger skin with such ease. In the end my fingers resembles Spongebob Squarepants’s backside. Holes everywhere.

But finally the job is done. The patch is secured and doesn’t look too bad. Quite pleased with that. THEN. Oh for f*** sake, oh come on!!!!

In hindsight it might not have been a great idea to push the needle not only through the front of the trousers but then through the back of the trousers as well. Great work. Now the left trouser leg is completely sewn tight at the knee. What’s the kid supposed to do – hop to school, pirate style.

Don’t think badly of me. After I unpicked the stitching I decided to stick the patch on with superglue. Let’s hope it doesn’t rain.

So yes it’s a wonderful sunset but my fingers are so much more redder…

Posted on by bereavedandbeingasingleparent · 56 Comments

Breathe

It’s Sunday so it’s time for a bit of Switzerland.

The Alps are one of the worlds greatest mountain ranges. Certainly not the tallest but they are big enough. Especially when you get close up to them.

But what they do have is a magic. A special atmosphere.

A place where it’s still possible to feel small. Humble in the face of nature.

A place where you feel a million miles from our vast urban sprawls.

Somewhere you can reconnect and just breathe.

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…