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 · 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 · 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 · 87 Comments

Soulless

That pesky grief monster sneaking up on innocent folks again. Should be a law about that. On sorry I forgot our Government ceased being a viable legislative body two years ago. Still we can look forward to Johnson or Hunt now. OMG. One is a self serving buffoon who dresses up outrageous racist comments as free direct speech. A man whose middle name should be dishonesty. The other is a man who forgot which country his wife was born in (supposed to be our Foreign Secretary) and who wilfully wrecked our NHS.

So no help coming from the Government any time soon then.

I was having a 50 minute walk – can’t believe how much I miss my runs. Tired but been worse. Then out from a side path a couple emerged. Holding hands and clearly so in love. Suddenly waves of grief and remorse smash me into the ground.

That was us a few years ago…

We should be still holding hands today…

Those days have gone…

Suddenly I feel very tired, very old and very broken.

It wasn’t supposed to turn out like this.

An hour later I’m back at work but basically I’m going through the motions. My heart is trapped in a different year. It’s unlikely that it will be released. I feel soulless, yes that’s the word, SOULLESS. Just an empty shell. Just focus on that one job – give our son the best childhood possible. That gives me a purpose. Something to keep me going.

Posted on by bereavedandbeingasingleparent · 74 Comments

Seasons

Same view – different season.

I never asked my partner which view she preferred. One of thousands of questions I never asked. Oh for those 17 years again…. I suspect she would not have gone for the snow version. She didn’t like being cold. To be honest she didn’t like it too hot as well. She was a Spring and Autumn person.

I would definitely opt for the snow version. I have always liked the cold. Maybe it was all those years of sitting watching the most northerly English Premier Football Team. Sat in a black and white shirt in the middle of winter. In summer I would melt. That’s a Yorkshire summer. Lord knows what I would do if I lived in Arizona or The Mediterranean or The Middle East.

Switzerland can get hot in the summer. I remember one really hot day. It was too hot for my partner. After a quick visit to the zoo she stayed in the hotel with our son while I went for a run along the lake. Never been so hot. After 40 minutes it was too much and I just jumped into the lake. Oh the sweet cool glacial waters. And I can’t swim… When I emerged from the lake a sweet old man was walking past shading the sun out with an umbrella. In almost perfect English he said

“Grüezi. You must be English. Only someone from England would be mad enough to run in this.”

But I digress. This is Swiss Sunday and it’s not supposed to be about me. That’s wrecked any chance of a free Toblerone from the Swiss Tourist Board.

Switzerland is a special place. A place for special memories. A place where you can visit a valley one trip and it’s deep snow perfect for skiing. The next trip it’s scorching hot and it’s beach soccer.

Unlike the UK these days it still gets distinct seasons. Stunning colours in Spring. Heat in the Summer. Moody Autumns. Proper winters. That is how it should be. Something we need to try and preserve.

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 · 65 Comments

    Alone

    Complete white out. Zero vision. Your boots constantly struggling to find grip on the sheet ice. All you can hear is the wind howl and your rasping breathe. Somewhere to your right are bone breaking crags, to your left a 200 feet sheer drop. Holding the ice axe waiting for the inevitable fall. The trail has disappeared. The map is useless. The compass won’t give an accurate reading. Alone. Are you too far right or god help you …. too far left. Too late to turn back. Your only guide is to follow the sharp slope upwards to the summit.

    The delights of winter mountaineering. Or is a metaphor for life. Disorientation, lost, no idea where your going, unattainable goals, alone, no plan, fear and panic.

    Then hope. A kind word. A caring hand in the dark. Brief enlightenment.

    The clouds briefly part. The beautiful mountain summit reveals itself. You survived that crisis. Panic subsides. Your pounding heart starts to ease. The break in the clouds is short lived. But you have a path. You have a direction. You have hope. The climb continues.

    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.