Posted on by bereavedandbeingasingleparent · 79 Comments

To be or not to be

A beautiful delicate flower. Unfortunately it has decided to grow directly on the mad dogs preferred route to his watering zone. Given the unruly speed the four legged wrecking ball hurtles down this path it’s not the ideal environment for delicate beauty. Will it survive. Will it be crushed to a pulp. Who knows.

The new school year is looming. Will we start. Will we home educate. With all the emotions swirling around the house currently it’s not the easiest time to focus on crucial matters. But it’s decision time.

As our health service points out – The school system is failing our son. No additional support is provided in terms of his Aspergers. In terms of Dyslexia it’s the bare minimum. The assumption is that he can’t read, never will read and he will be shown how to use a reading pen for the final exams. Set low exam expectations and anything achieved is a bonus. Let’s be clear that’s not all the teachers. Some do see the potential. Unfortunately his biggest supporter has left this summer. It will be illuminating to see if the school move him up to higher sets this year. His effort, his behaviour, his results clearly highlight the correct answer. A number of teachers have also recommended that course of action. But kids with dyslexia are often just bottom classed.

Yet the evidence suggest that the school system is wrong. The Doctors continually state that it is far too early to give up on the reading. The work they do demonstrate much promise. A kid who has been written off now can read the subtitles which appear on movies. He can read text messages. Today he read a 2 line subtitle and only got one word wrong – minority. He’s achieved that progress without school help.

He needs a tailored approach to development. But to be fair the schools hands are tied by government policy and cutbacks. Tailored education does not happen unless you can afford to go private. Private like the entire Government has enjoyed. Home Education currently allows the parent to tailor the approach. You can develop an approach that best suits the individual. Unfortunately the government is keen to stop this as well.

The major obstacle to home education is having one parent. It’s trying to home educate and trying to bring in sufficient income at the same time. I just can’t make the numbers stack up. I just can’t find enough hours in the day (& night).

The bottom line is that I currently just can’t home educate and balance the books. Home education is the right option but it’s also currently an impractical one. So much frustration. If we still had two parents then it would be doable. It just feels like our son is being penalised again for something outside his control. That makes me angry. Very angry. What’s the line – you wouldn’t like me when I’m angry. Hopefully I don’t turn green. That anger fuels the desire to find a way. Our son deserves that. He deserves at the very least a parent who tries.

So in two weeks our son will return to school. Hopefully to a much improved education. But if it continues to fail then we will just have to find a way.

Posted on by bereavedandbeingasingleparent · 86 Comments

The phone

A couple of miles from our village a large TV event has been taking place. Something like 20000 people have been attending. But we haven’t seen a soul. The dog walk felt like we had the land to ourselves. Isolation.

This summer is probably going to be my most isolated ever (so far). Outside our gang I would be amazed if I have spoken more than 30 words to the outside world. Probably had more conversations with the plants (weeds) in our garden. It really is starting to show. Even something as simple as buying a couple of entry tickets leaves me a gibbering wreck.

Not had a single conversation with anyone in the village in months, Suspect the village are celebrating that. Even the postman has gone into stealth mode. Absolutely no sign of the neighbours.

A few years back I remember a clinician telling us that we should probably get used to the idea of becoming isolated. Get used to your own company. She had seen a lot of parents in our position get cut off from friends and the outside world. That seemed fine as I had my soul partner with me. Didn’t realise how applicable own company would become.

This afternoon I checked if our phone was still working. It’s not rung once during the entire school holidays. In fact my mobile has only had two brief work calls. As the months go on my isolation from the world gathers pace. I’m not sure if that scares me or delights me. It’s got to the stage that I’m not sure if anyone would notice if I replaced the phone with a large bust of Boris Johnson. Probably not.

I would hope that the Boris bust would become a favourite cock a leg spot for the dog. Suppose I would need to move it outside. Wonder if Boris would tell the migrating birds to bugger off back to their own country. Sorry should really give Boris his full name

Alexander Boris de Pfeffel Johnson.

Ironically Boris wasn’t born in this country. Given his position on immigration maybe he should send himself back to America. Anyway I bet his phone rings more times than mine. A man who currently wants the UK to be isolated Internationally probably doesn’t understand what isolation really means.

Maybe I should offer my services. I could be the Governments expert on isolation. I did think about being the Government expert on talking gibberish but they have already got that position well and truly covered.

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….

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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 · 96 Comments

That’s how it is

Just seems such a waste. Such a beautiful flower and yet it’s in our garden so it only has an audience of two. But that’s how it is.

He is so caring. When his class had the last day in the old school one of the girls cried her eyes out. The only one to go across to her and ask if she was alright was our son. Yet because he is on the spectrum he must be unfeeling and cold…..

He brain is far more powerful than his Old Pops yet somehow I went university and he is seen as being low attainment.

He has a love for scientific enquiry yet that counts for nothing as he can’t accurately hand draw a plant cell structure or spell correctly common science words.

He can create awesome self contained worlds with detailed mythologies, politics and cultures. Yet because he can’t construct a grammatically correct postcard he is written off.

He can forensically debate historical details yet because people assume that he will never read a textbook he is not encouraged to foster that subject love.

The education system has written off his reading as something which won’t develop yet he can read and send texts without help. He is told to just get used to using a reading pen yet today while watching the Justice League he read the sub titles almost perfectly.

He is not part of the in-group of kids who live and breathe football. Yet he can talk for hours about football stats. Relive the sports greatest moments. Can talk for hours about the minutiae of Team setups and tactics.

He can be so relaxed, so astute and so naturally funny. Yet only I see this. It does seem such a waste. But that’s how it is.

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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.

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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.

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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.

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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…