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…

Posted on by bereavedandbeingasingleparent · 111 Comments

It’s a fight

Life is a permanent fight for survival. That applies to plants. It applies to humans. It applies to me. It probably applies to you.

For me it’s a fight on many fronts

  • Depression
  • Grief
  • Isolation
  • School
  • Government
  • Health Providers
  • Finances
  • Stereotyping
  • Body
  • Tiredness
  • Workload
  • With myself

It’s never ending. As much as you try you can never apparently win. Often your best hope is to just keep in the game. Survive another day.

But the key is to try and talk. Sometimes that is easier said that done. It is so easy for someone to get lost. Cut adrift from society. Friends drop off the radar. Those you love and depend upon are taken from you. That’s when talking becomes a rarity. A quick chat with the postman the closest you get to outside world discourse. It just isn’t enough.

But thankfully we have another weapon available to us. Blogging…. It opens up a new way to talk. To listen. To seek solace. To meet new friends. To feel connected again. To weep. To get angry. To think. Maybe even to laugh.

It’s not for everyone. You sometimes hear the criticism. You may get the occasional critical email.

So to those who accuse some of us of just being attention seekers. Wallowing in our own self importance. Inflating our egos. Maybe you are right, maybe your wrong. But frankly I don’t give a fig. I have more important fights to pursue and for me blogging is now a vital part of my defence system. It helps to prevent me veering towards some very dark places.

Yes it’s a fight but a fight better shared.

Posted on by bereavedandbeingasingleparent · 102 Comments

Parent worries

Something has been nagging at me all day. Just can’t get it out of my head. Even the two cows couldn’t shake the feeling.

I picked son up early yesterday from school. We had a doctors appointment before we set off for Manchester Arena. As we walked out of school we passed his class walking in the other direction. Half of the class completely blanked our son even though he said ‘Hi’ a few times to them. But that might have just been me my presence – that’s what I am trying to convince myself.

The bigger worry is that a few of the kids did speak to him. One kid asked if he was going home. When our son said yes the kid replied with a really sarky comment. Then as we walked on I heard a couple of other rather unpleasant comments directed at our son from some of the other kids. These were also greeted with much laughter. I really hope our son never picked up on these. Luckily I think he did miss the meaning.

I realise school is a bear pit some days. But…

I had hoped he was slowly starting to fit in. Maybe I was deluding myself. That thought feels like a dagger to the heart. Yes it could just be just normal playground antics which have been going on for years. I remember as a kid getting the ‘specky four eyes’ comments. Many of the other kids got far worse. But it is a worry. Pointless speaking to school as they say he is fitting in well with a number of friends. The school does seem to count friends as anyone who sits next to our son in a lesson – regardless of whether a teacher has instructed that child to sit next to him or not.

Just going to have to try and make this weekend even more fun for him.

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Says it all really

Had to complete another report today about our son. It’s amazing given the number of reports we have had to do that they don’t ever seem to get any easier to write. Maybe it’s just me. Anyway today’s report featured some interesting questions

When did you first realise your son or daughter may have autism?

That’s an interesting question as I don’t think we ever had that one eureka moment when we suddenly realised he was on the spectrum. It was more of a drip feed type of realisation. If we are looking for one point then maybe when he was 5 and the first medical professional said that we should start the process of getting an official Aspergers diagnosis. One confusion – when we started the process Aspergers and Autism were listed as separate life long conditions. Now most agencies have dropped the term Aspergers. Son quite likes the idea of having a condition which doesn’t officially exist anymore.

What initial behavioural signs led to your belief that your son or daughter had autism?

Strangely we didn’t have a checklist of symptoms to work from back then. We didn’t have a clue on what we were supposed to look out for. It’s only when you look back that you see the clues. In our case we had several apparently independent clue strands that we should have brought together and bagged under a heading ‘potential Aspergers’.

  • Repeatedly lining toys like cars and animals up in perfectly straight lines
  • Initial slow development of speech
  • But when speech started a sudden extensive vocabulary developed but with underlying problems with pronunciation
  • Flapping hands when excited or laughing
  • Not able to sit still
  • Fixation on specific objects or toys
  • Delayed walking and crawling
  • Excessive clumsiness – that might be my genes….
  • Refusal to wear socks and shorts

But what confused things was that up to the age of 4 he had no problems with making eye contact. Plus he had many many friends. He loved playing in groups. He did have sensory issues relating to his hearing but they were being examined as a specific ear issue. He has never shown any sign of a lack of empathy.

It was only from the age of 5 that his symptoms seemed to heighten and suddenly combined with becoming completely withdrawn from the rest of the class. Rather than being in the thick of play he would stand completely by himself. Additionally his specific ear issues were ruled out and the focus moved to looking at sensory overload. Yes he started to fall behind at school but that was probably the initial impact of dyslexia.

How well do you feel the education service has supported your son or daughter?

They only left 3 lines to answer this question. I asked our son and he said that 3 lines is more than enough to write ‘PANTS‘. So that is exactly what I wrote. I suspect I might go back to this and elaborate a little more but part of me hopes that I stick with the original response. Says it all really.

Posted on by bereavedandbeingasingleparent · 45 Comments

And still it rains

The heatwave is here in Europe but it’s refusing to cross the North Sea. While Bern is getting 34C, Madrid gets 35C and blazing sunshine good old Yorkshire gets drizzle and 12C. So still it’s proper weather.

And so as the weather sticks to my post from earlier today, the system also continues to follow that posts script.

Another day and another system letter. A service we did have access to but which has dried up recently. Today brings the confirmation. Government cut backs so the service provider has to prioritise and our son is currently seen as a low priority. So it’s another service we have to reapply for and go through a new assessment process. It’s just not fair on kids like our son.

Posted on by bereavedandbeingasingleparent · 43 Comments

Waiting

Apparently a heatwave is about to hit Western Europe. I’m not sure the required paperwork and clearances have been signed off for Yorkshire yet. As a result it’s gone back to cold, cloudy and very wet. Here this is called proper weather.

Anyway let’s see if the much vaunted hot stuff arrives. Knowing our luck it could be a long wait. But we are accustomed to waiting for things.

  • Snow at Christmas … 10 years
  • My so called football team winning a domestic trophy … 64 years
  • A U.K. Van Halen Tour … 35 years
  • Last Total Solar Eclipse in Yorkshire … 92 years, next U.K. one 2090

We can add to these the following waits.

  • Bereavement counselling for son … over 2 years and counting
  • Waiting to have son’s dyslexia initially assessed by an Education Psychologist … over 3 years
  • Aspergers Review and Assessment … 2 years
  • Dedicated Aspergers Therapy … 1 year
  • Anxiety Therapy … 6 months
  • Speech Therapy … 4 years
  • Paediatrician Assessment … 1 year
  • Parent Training on Autism … Never going to happen So far 5 years

You get the picture. Nothing comes easy. As a parent. As an Autism Parent. As a Aspie Parent. You have to push for the support your kid needs. Constantly chasing up contacts. Everyday seems like a new or recurring battle. Letter after letter. Chasing up phone calls. That’s something which isn’t mentioned when you start your new life journey. You sort of assume that the professional help will be there when you need it. You quickly find out that the professional help is withheld or is delivered at times to suit the system rather than the child.

What the system doesn’t seem to appreciate is that you get such a short window of time to foster real progress. As one psychologist said

Up to about 14 years is the development sweet spot. That’s when the real, long lasting progress is usually made. That’s when you have a chance to start closing the educational gap. After that it becomes increasingly difficult. If it’s left too long then its probably just about trying to stop the educational gap widening too quickly.

The frustration that causes you. It’s hard to explain that feeling. Maybe constantly walking in treacle. Every step forward is such an effort and yet you are so far away from your destination. But the fight has to be fought. As long as our son wants me to keep pushing then I will keep pushing. That’s what parents do.

Posted on by bereavedandbeingasingleparent · 50 Comments

Sherlock’s Yorkshire Canon

Last night we sat down to watch a couple of episodes from the wonderful Sherlock TV series. One of which was the Hound of The Baskervilles. Or as my helpful word checker wants to autocorrect to – the Hound of the Basketballs – that would be a slam dunker of a book. It is the episode where Holmes and Aspergers are specifically referenced. When Lestrade talks about the great detectives awful people skills Watson specifically mentions Aspergers. I could see no apparent reaction from our son.

However later the following was said

“I know it helps explain Sherlock’s character and his abruptness with others. And it’s kinda nice that the we get a hero with autism. But people will start to think that we are all brilliant, unfeeling and very very odd. Definitely psychotic. One day we will get a character who is just in the middle.”

He is so right. It’s called a spectrum for a reason. Labels just don’t fit. The media focus on the extreme ends but hardly ever look at the middle. But that’s the media and entertainment for you. It’s like when we crashed into the world of single parenting, single father parenting. I remember having a similar conversation

Why do so many movies and TV shows depict the single dad as a suicidal drinker obsessed with dating sites and clearly unable to cope with at least one wild child who has gone bad and needs saving.

Currently sat here with a herbal tea and listening to classical music. That’s not going to make for an interesting movie. Anyway back to Sherlock. We sat enjoying the episode when two thoughts struck me.

ONE: Sherlock was one of my partners favourite TV shows. We are watching her DVDs. She should be sat next to our son enjoying the experience. Life is not fair.

TWO: Looking round at the room. It’s a mess. She would kill me.

So this morning before the dog walk into the strangely blue skied Yorkshire countryside I had a major cleanup. Even put the Sherlock DVDs neatly back in the box. Then on the walk I almost could here her voice saying ‘stop taking so many photos’ so I only took the one this morning. Rather than snap away I looked at the view, imagined a demon hound stalking Dartmoor and I wondered what a Yorkshire themed Sherlock would sound like.

Ferret of the Baskervilles

A study in rhubarb

A scandal in Barnsley

The adventure of the missing Yorkshire Pudding

The adventures of the crooked Lancashire man

The adventures of the Yorkshire Terriers Main.

As much as I love Yorkshire thank god Sherlock was based in London.