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.

Posted on by bereavedandbeingasingleparent · 54 Comments

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.

Posted on by bereavedandbeingasingleparent · 119 Comments

Tell me why

In my voice – Tell me why

  • My partner was taken from us when she was so young.
  • The system continually fails our son.
  • The Government can find billions to bribe other parties to keep it in power but can’t find the money to fund education support for the kids who need it.
  • I don’t sleep anymore.
  • They say the world is getting smaller yet I feel so isolated.
  • Chocolate has so many blooming calories.
  • Hair doesn’t like growing on my head yet it sprouts like an Amazonian Forest on the back of the my hands.
  • The cat continually finds a way into the wardrobe.
  • I can’t find any socks in this house.
  • They never made a Captain Scarlet movie.

In our son’s voice – Tell me why

  • My mum had to die.
  • Both my grannies had to die.
  • My hamster had to die.
  • My girl cat who was like a sister to me had to die.
  • I can’t read.
  • Some people think I am stupid just because I am autistic and dyslexic.
  • Shops have to be so busy.
  • Hazard is leaving Chelsea.
  • Do people have to kiss in films.
  • Marvel Movies are way better than DC Movies.
  • Most kids don’t like rock music.
  • Broccoli wasn’t deemed an inedible plant.
  • My Dad can’t cook.
  • In our dogs voice – Tell me why
      • I get shouted at for pinching socks.
      I get shouted at for digging holes.
      I get shouted at for eating garden tools.
      I get shouted at for eating garden furniture,
      I get shouted at for digging up plants.
      I get shouted at for burying stuff like socks.
      I get shouted at for pulling bits of the apple tree off.
      I get shouted at for escaping.
      I get shouted at for climbing in the hedge.
      I get shouted at for eating cat poo, cow poo, sheep poo.
      I get shouted at for pinching food.
      My best friend isn’t with us anymore. I know I am a dog but she was a really cool cat.

    In our boy cats voice – Tell me why

    • My sister isn’t with us anymore.

    • My best friend, the really lovely woman has gone. I miss siting on her lap.
    • I get shouted at for missing the cat litter by several feet.
    • I get really shouted at for missing the litter by so many feet I hit the wall.
    • I get shouted at for sitting in front of the TV when a movie is on.
    • I get shouted at for sneaking into the wardrobe and getting white hairs on all the black clothes.
    • I get shouted at for falling in hot plates of food.
    • I get shouted at for always tripping people up.
    • I get shouted at for sleeping on the laptop.
    • I get shouted at for sleeping on the toaster.

    In our gerbils voice – Tell me why

    • We don’t live in a toilet roll factory.
    Posted on by bereavedandbeingasingleparent · 55 Comments

    More school days like this

    We have had some big anxiety attacks and tough times recently so it’s nice to have a stress free post.

    “Dad I shared a desk with a ladybird today. He watched a bit of history with me.”

    It’s always good to get close to nature. Especially when you are at school.

    “I wish all school days could be this good”

    The school has a system that everyday a pupil is taken out of classes and assigned to school reception. Basically for the day they deliver messages, photocopy stuff and do admin tasks. It’s supposed to broaden their horizons. Today was our son’s turn. It certainly broadened his.

    “Basically every so often I would deliver a message to a teacher. It was funny when the receptionist asked me to deliver a message to a teacher and the teacher was stood at reception. I delivered it without moving. Then I had to deliver a message about a kid who couldn’t come in today as he had come down with flu – he said he was doing this yesterday as he hated French.”

    “Greta would be very annoyed with me. Every time I used the photocopier I kept getting the paper upside down. Wasted so many sheets. I did get a great copy of my hand”

    You can’t believe how relieved I was when he said hand….

    So what happened when you had no work to do.

    “I went to see the teachers and they just sent me back to reception. Finally one teacher told me to go to the library and get a book to read. Ha ha he doesn’t know I’m dyslexic. So I improvised”

    Did it involve your iPad and games.

    “Not entirely. Yes I played some very educational games like Space Invaders and Sonic. But I also watched a historical thing about how bad the British Empire was and how the navy went after Pirates.”

    So you watched Pirates of the Caribbean.

    “Yes. What a top day.”

    Posted on by bereavedandbeingasingleparent · 45 Comments

    Parent Evening

    Sometimes school does make me laugh. On his return from school today I found a severely scrunched up piece of paper. It’s the invite to the annual parent/teacher consultation. I’ve got to decide which teachers I want to see. Tick the appropriate boxes then get ‘your son or daughter to arrange times with the teachers’.

    I just looked at our son and said that’s not going to happen is it really. Son smiled and said

    “Never in a million years”

    Then we both burst into fits of laughter when we read the next bit of the letter.

    We are happy for students to attend with their parents. School uniform is not required but we do ask that students do not chew gum or wear hats whilst inside the school building.

    WHAT

    “Dad isn’t that Hatist …”

    Yes son it’s very anti hat and it’s also very anti kiddie as well. So apparently it’s ok for an adult to chew gum and wear a hat but not a child.

    “Dad does that mean that I’m ok going in nude or wearing a satanic cross as long as I’m not wearing a hat..”

    Apparently so.

    So we probably won’t get any teacher appointments booked but we are still turning up so I can wear the biggest and silliest hat I can find at the charity shop.

    Posted on by bereavedandbeingasingleparent · 93 Comments

    Storm Bunker

    We had a large thunder storm pass over this afternoon. The cat was taking no chances. After the first bang he made his way to his storm bunker.

    Unbelievably the early morning cinema screening was very full. The cinema was mobbed. Not seen crowds like that since the ‘Everything for a Pound’ Store had a sale. It’s not a statistical significant sample population but from the early morning hordes I guess that The Avengers movie is going to pull in some astronomical numbers.

    And yes it is an astonishing movie.

    Yes the crowds unsettled our son but we took our customary place on the front row so no one could be in front of him or to the left of him. It’s so close to the big screen that I come away feeling like I’ve been chewing on magic mushrooms but it works for him.

    For 3 hours we both lost ourselves in the Marvel Universe. All our problems and anxieties forgotten. Heroic deeds fill your heart. With even a bit of free grief counselling thrown in by Captain America. But sadly it doesn’t last. You eventually find yourself back in the same place with the same issues.

    In fact it feels like we have regressed. Fifteen months ago we eventually secured some anxiety counselling for our son. I say ‘we’ as the fight to get some help started while my partner was still very much with us. It seemed to really benefit him. Progress was starting to be made. But now due to cutbacks that support has dried up. The anxieties are building and it feels like the system has cast him adrift again. We have been lucky really – far too many families get zero help – all they get is patronising comments from politicians who have no interest beyond their off shore bank accounts and rich friends.

    So as the thunder rumbles on we try to fight demons. Health anxieties, fear of death, school anxieties, friend anxieties, social anxieties, reading anxieties, fear of being left alone anxieties…..

    I’m no psychologist. I’m no health professional. I’m no education specialist. I’m not a grief counsellor. I’m just a parent trying to figure out this increasingly bizarre world with no one to help guide me. Doing the best I can. Deep down this scares me as what chance do I have when I can’t even come close to fixing myself. Queue worried face. 😱

    Pleased to report the immediate threat to life and property must have passed as the cat has made his way back to his favourite chair again. That’s one less worry to deal with.

    Posted on by bereavedandbeingasingleparent · 70 Comments

    Bogless Garden

    The Bog Garden needs some rain to become boggy again. Maybe soon as storms are forecast. It can’t be much fun being a bogless garden.

    Making friendships can be difficult for our Son. Maybe it’s part of his Aspergers, maybe it circumstances, maybe it’s something else. He loves texting a cool friend but they are separated my thousands of miles. He doesn’t often get to meet up with kids his age. Son has come across a few really nice kids. They let him tag along sometimes. He does like the feeling of spending times with friends. I think we all need that somedays.

    However the kids will often talk about the stuff they do. The meet-ups, the sleepovers, the trips, the clubs and birthday parties. Stuff he doesn’t get the chance to experience that often. That’s tough for a kid. Also after a while they often split into pairings and son tends to be left by himself. You see the kids walking in one direction and son heading by himself in another direction. I can tell when he comes back that he’s kinda sad. He’s so enjoyed the time with them but it does make him feel lonely. Today was a good example..

    As he walked back slightly apart from two of the other kids I asked if he was ok.

    “I think it’s time to go Dad. I’ve had fun and they have been very nice to me. But it was getting a bit awkward as they are best friends and wanted time to themselves. I could tell. It’s time to see my best friend my dog.”

    I’m so pleased he is getting a bit of time with kids his age. But I get so down thinking about the wider picture for him. I really get how he feels for one very good reason.

    I feel the same with my life. I get to link with a number of really close friends online but they are many many miles away. I occasionally get the chance to spend time with some really nice people. But they have their own life’s, their own close friend groups, their own families. I hear about the stuff they do, the holidays, the nights out, the meals, the parties, the romantic moments. I’m so pleased they get to do that stuff, they are such nice people that they deserve the happy times. But it’s stuff I don’t get to do anymore. A life I feel excluded from. That’s such a lonely and soul destroying feeling. I’m old and gnarled….. that’s just tough luck for me. BUT you just don’t want your kid(s) to experience the same feeling. All we can do is crack open a couple of sodas, hit the trampoline and see how many footballs our dog can destroy today. Time to try and forget stuff.