Posted on by bereavedandbeingasingleparent · 68 Comments

Brief

For just a few minutes the clouds parted and summer made a brief appearance. Back to rain now. It was nice while it lasted.

I woke up this morning and like most mornings – half asleep. Few minutes later I’m peddling away on the exercise bike. Starting to feel more awake now. 28kph – come on lazy pants bit quicker.

Dad your squeaking.

And with that his bedroom door shuts. (Most unusual) I most be squeaky. So my morning mini Tour De France is interrupted. Why is it that when you need something from the toolbox it somehow develops cloaking technology. The oil was in the box. Search abandoned and cooking oil is smeared over the noisy bike. I wonder if this is common practice in professional cycling circles.

So we start the cycling again.

Dad can you hear the strange noises outside.

The resulting investigation seems to indicate the side gate banging in the wind. Quickly fixed with a brick. It’s tough for our son. So easily unsettled.

Can you move the bike into my room.

Tell you what why don’t you bring your blanket and try to sleep on the sofa next to the bike. The dog will happily join you. Few minutes later he is settled in with his four legged hot water bottle. So I try to start cycling again.

For a few brief moments I get into the zone. Good speed. Then the mind starts to wander. The biggest problem with indoor cycling. It was an August Sunday three years ago at about this time when the phone rang. It was the Doctor saying sorry but the last treatment option had failed and it was now time to move partner into end of life care. Shiver down the spine. Feel completely sick. Tears starting. Then anger. Why. Tell me why.

Anger fuelled peddling. Speed is now becoming breakneck.

Dad your squeaking again.

And with that it’s time to get off the bike. Squeaking wins the day. Come on son let’s have an unhealthy breakfast.

Can I have waffles.

You can have anything you want son. So like the sunshine. Today’s exercise was brief and my healthy eating regime is broken. Too brief to make a difference.

Posted on by bereavedandbeingasingleparent · 94 Comments

Me Me Me

Blue skies have been a rarity over the last couple of weeks. Strangely this photo is a few weeks old. Can’t remember the last time I had to water the tomato plants. If anything it’s more about trying to stop them drowning in the rain water. The mad dog is currently sat looking out through the back door. Yet when I open it for him he just continues to sit and seems to shrug – if you think I’m going out in that you have another thing coming. Other areas of the county have seen bridges swept away and a Dam almost breached. Wasn’t it only a few weeks ago I was talking about Yorkshire and temperatures in the 90s. Strange old summer.

We have largely been cut off from the outside world this holiday. The occasional and extremely brief trip to the shop but son has stayed in the car. Trip to a castle but at a time (and with the poor weather) that it would be largely empty. We are thinking about a trip to another castle, a zoo and hill walk – but these will be scheduled at the quietest times possible. This is how our son likes it.

But it does have a downside. Next month son will return to school. Small site with over 800 kids and adults. Its just not a natural environment for someone with Aspergers. It doesn’t help that within a few days of school opening it’s the anniversary of his mums death. It not easy for anyone but no kid should have to go through that.

Soon we will need to start the process of getting him as ready as possible for that dreaded return. We will have a few visits to the school. A word with the caretaker will allow a walk round the empty corridors. But that just won’t prepare him for so much noise, so many faces. So we are going to have to visit a few busy places. A couple of trips to a Supermarket. Maybe a visit to a popular museum – York’s Train Museum. It’s a balancing act trying to acclimatise yet not trying to unnecessarily spook him.

The other part to this is ME. It’s about trying to get ME used to people again. It really doesn’t come naturally to ME. Just look at that it’s all ME ME ME with me. I blame it on the rain.

Current mood – Dampish….

Posted on by bereavedandbeingasingleparent · 64 Comments

Alviiiiiin!

I wonder if the cow is even aware of that strange thing in the sky. Should I warn the cow. Probably not – would just think I’m full of hot air.

I think saying stupid or silly things is a release for me. It’s a way of relieving pressure. Diffusing the dark thoughts that can crowd my mind. However that Monty Python in me is often misinterpreted.

He’s a happy soul.

Not a care in the world.

OR

He’s got over things now.

He’s moved on.

That is so far from the truth. Everyday is a struggle. You just have to learn to coexist with Depression and Grief.

I would love to release my inner demons through beautiful paintings or dark soulful poetry. Unfortunately that’s just not me. It doesn’t work for me and the end result is a pile of pants. All it does is bring out my inner Alvin and The Chipmunks. Not sure that would be a box office winner – Alvin and The Grief Trip.

Sorry there I go again.

The point I’m trying to make if Alvin would just let me is that how you appear on the surface is often very different to how you actually feel inside. It doesn’t help that often people don’t want to hear how you really are feeling. They will ask – how are you? They desperately want you to say – fine. And guess what – when you get asked that question your almost preprogrammed to say – I’m ok.

Maybe we should have a deal. From now on let’s all REALLY ask how someone is. When they say fine or ok how about we follow up with – are you really sure. Or I’m here for you I know how tough it can be.

The other part of the deal is when someone takes the time to really ask how you are then be honest. Instead of saying just dandy it is ok to say like shit or not good or I’m struggling. Or if your feeling really brave just say I could really do with a hug.

We all struggle sometimes. Wouldn’t it be a better world if we could all just be a bit more open about that. What do you say Alvin.

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 · 54 Comments

    Blinkered

    All the days I have walked the same path. Seen the same views in differing weather conditions. Yet I’ve been blinkered. Walking through a small wood and always looking straight ahead at the path leading out of the trees. If I only had stopped looked right and peered through the trees I would have seen this small pond. Yesterday I did that. Then throwing caution to the wind I looked left. Another pond.

    Yesterday was a day of revelations. I was sat in the living room pondering life and death when I suddenly noticed something that I had completely missed. Before the world change we were like most couples. All of our possessions just merged together. Her 80s dance CDs would be intermixed with my Heavy Metal discs. Her historical drama DVDs would be randomly mixed up with my Sci Fi ones. Apart from clothes our stuff just randomly lived together.

    Now she is gone and yesterday I realised the order of things has changed. Now we have separate piles. Her CDs in one near pile, mine in another. Her books in one book case, mine in a separate one. When I’ve used her stuff I have filed it neatly back with her pile. A repeated pattern. Her stuff, then the stuff we bought together then my stuff. Perfectly split.

    Bizarre. Why? This is purely down to me yet it’s completely out of character. The most disorganised and random person going. Probably more than ever and yet suddenly items are being put in order. I hadn’t even realised I was doing it. Blinkered again.

    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 · 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 · 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 · 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.