Posted on by bereavedandbeingasingleparent · 158 Comments

Breathe

And breathe…. count to 10 and breathe again.

More and more countries go into lockdown. We are surrounded by lands where schools have been closed. Meanwhile here in England our leaders give interviews only to carefully selected media supporters. Even the Chief Medical Officer gives an interview to a right wing newspaper. On the off chance you just might want to find out what our top medical person has to say on the crisis then you have to pay for it. Apparently we might force anyone over seventy into isolation in a few weeks. We might close bars and cinemas down – maybe in a few weeks. We will definitely keep schools open – if teachers go off sick then we will just cram more kids into the available classes. Sticking to the strategy of trying to get as many of the fit and young infected so they develop immunity. All sounds a bit X-Files to me. Seems to be based on the assumptions that infection has no long term side effects and any acquired immunity will be for the long term. Both assumptions are scientifically unproven as yet. Increasing numbers of experts appear to not share the same opinion as our key experts advising the government. Plus this is our Government we are talking about – they couldn’t run a piss up in a brewery. Has anyone seen Boris Johnson over the last few days? I really hope he’s as stressed out as my kid is over the virus….. If it’s sending many of the adults into panic what is it doing to our children.

It’s an odd feeling. Do I trust our countries leaders and it’s experts OR do I rather trust other countries approaches. That excludes the overall US approach – I’m not sure waiting for it to one day just disappear really cuts the mustard as an approach.

So I am wrestling with one decision. Do I let son go to school. I have a duty of care to look after him. Do I think he is safe, secure and well cared for in the educational environment. I’m still wrestling with that one. I think many parents round here are facing the same call. Yes full on school closures have a knock on effect on childcare and staffing in our essential services. Especially as our Government has deliberately cut those services to the bone. We now only have a quarter of the critical care beds that Germany has. But on the other hand how many kids and teachers have underlying medical conditions. Are we not placing them at risk. So it’s not an easy decision. But I need to focus on my son. What’s in his best interest. We also need to keep moving forward.

I need to go shopping tomorrow for a few things. Should be an interesting experience. One of the things I need is a Chocolate Almond Drink. It’s about the only nice dairy substitute drink I have found. It’s expensive but it is always on offer for 3 for £3. Well last week it was caught up in the panic buy restrictions. Now I can only buy 2 in one shop. Suddenly it’s become expensive. What’s bizarre is no bugger else buys it. I strongly suspected that for a while as they don’t put many of these drinks out and often they looked like they hadn’t been touched since I was last there. Being a sad person I have for the last three weeks put a little pencil mark on the next available drink – it’s still been there on my next visit. So clearly they are worried that as the only buyer of that item I may panic buy and deprive myself of buying it next time. It’s all a bit bizarre. But that’s 2020 for you.

With that I will now try to focus on other things on this blog. Yes I may have to mention the pesky virus but I will try not to that much. Over the next few weeks blogging is probably going to become more important for many. A rare connection in our dislocated world. Maybe trying to create a bit of normality in this maelstrom is what is currently needed. What is certainly needed is that we show how much we love our family and those we care most for. That we try just that little harder to be considerate and look out for others in our community. Trying extra hard to be nice and kind. And yes don’t forget to find the time to care for ourselves as well. Finding that time to smile and breathe. We might not be able to agree on what the best approach is to dealing with the virus but being just a little kinder will certainly make us all feel just that bit better about our world. Thats not going to happen fighting over that last pack of 50 toilet rolls.

Take care my friends. x

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Prophecy

Colour slowly returning to the garden. Sadly just in time for the next weather blasting. Just so predictable….

A few years back our son had a wonderful medical expert who did an awful lot for him. Just before retirement I remember the experts prophecy. To paraphrase

Our country’s support for kids like yours is nothing short of a disgrace. Sadly if you think that the support he gets now is patchy and insufficient, well just wait a few years. It’s likely to get very much worse. Maybe when he is 12, most definitely when he is a teenager, the minimal support will dry up. He will get reassessed by clinicians who have no practical experience of your son. They will deem him above the clinical threshold and will turn off the support. Clinical threshold should be renamed budgetary threshold. It’s not a reflection of the clinical position. He will still have severe clinical need for intervention. The support will be removed because as a society we don’t support teenagers and adults on the spectrum. We expect them to fend for themselves. If they don’t fulfil their potential then tough. I’ve seen this happen to virtually every kid I have worked with. If they achieve anything in life it’s just down to themselves and their parents. On top of this the school system just assigns them to the bin. It stinks….

Sadly the prophecy is coming true….

Just before Christmas he was reassessed for one of the support services he receives. The assessment was done by someone who had never met our son. The outcome – the service was withdrawn as he no longer met the clinical requirement.

Today we had a therapy session at the local hospital. It’s a service he has had since he was 7. It’s made some great progress over the years. It’s taken time and many sessions. At the last session his worker agreed on a programme to help with his handwriting, keyboard skills, and areas such as shoelaces/school ties. The programme after that would look at trying to help with coordination specifically aimed at swimming and bike riding. He has significant problems in each of these areas. Well guess what. At today’s session his worker was joined by a senior member of the team. A reassessment was made of his case. After a few practical exercises we were informed that he was now above the support threshold. He was now discharged from the service. They would write to school and give them some suggestions on his future schooling. We were handed a couple of information sheets on handwriting and shoelace tying. We can ask his Paediatrician to review this decision. We are on the waiting list to see a Paediatrician – currently our last appointment was over two years ago.

So we are now down to one service support now. But that is so underfunded. His worker is wonderful but because of workloads she struggles to see him now. Last year we got invites to a couple of group sessions. His last one to one session was back in 2018. Clearly it’s only a matter of time before that last helping hand is removed.

It really feels like that the health service has now dumped our son since he’s a teenager. I guess they argue that it’s an educational problem now. Unfortunately the school system has washed its hands of our son already. Like so many kids the school’s write them off. Label them low attainment. If they get the odd exam certificate in the end then school has achieved its goal. Ticked it’s box on the Government’s school assessment.

So here we are in the brave new world. We are fending for ourselves. Our only support – a few pages of photocopied guidance from a textbook. How can we have got this so wrong. How many thousands and thousands of autistic teenagers and adults are in the position. Some of the statistics on autistic suicide rates, unemployment, depression and poverty are appalling. But society doesn’t care. Our leaders don’t care. That’s a truly sickening thought.

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Brakes

A stream about 5 miles from our little bungalow. Near the boundary of my current world.

It’s funny as a kid I always thought that my world was a small place. We didn’t have much money so holidays would tend to be just day trips on the train to places like Whitby and Scarborough. If we we’re lucky a school trip would take us maybe 50 miles in land. Dad had a car but it was only used sparingly – just for getting him to work. I remember watching exotic places on the TV and thinking one day I want to see them. I looked at books about mountains and so wanted to see The Eiger, The Matterhorn, K2 and Everest. I always thought that as I got older I would travel more. My world would grow and the world would shrink.

For a time it did workout that way and yes I did get to see The Eiger and The Matterhorn. I visited parts of Europe. I even got to see South Africa.

Then the world shifted again. Autism. Bereavement. Money concerns.

Now I find my world rapidly shrinking again and the world growing ever larger. Increasingly son sees comfort in his own little world. Our house, garden and the landscapes that immediately surround him. Longer travel is so difficult for him. It has to be mapped out and carefully controlled. That’s before we factor in the limiting factors of travel as a single parent and money constraints. My world is shrinking again. Even work has to operate within these constraints. My world has shrunk. One of the few bridges into the wider world is the occasional concert. These still work for our son.

We are due to travel to see The Who play in a couple of weeks. We will have to travel by car as public transport here is minimal and stops by evening. Regardless of its availability son struggles with buses, trains and planes. These are likely to induce panic attacks. So we travel everywhere on foot or by car.

Two weeks ago the car was in for a service. They found problems with the brakes which needed some parts to be replaced. The garage said I was ok to drive it for a couple of weeks until the garage could fix it. So this Monday was supposed to be the repair day. The garage phoned today to apologise. They we’re going to have to cancel the repair for a few weeks. They just can’t get the parts. The Parts Suppliers are out of stock and are waiting for new items to arrive from China. The garage is a national chain and all the branches are out of these parts. Apparently all the other rival garages in the area are in the same boat. So the repair is on hold. The suppliers are hoping to have new stock arrive soon but that may not be until April. So I’ve been told to try and really limit the car use until the parts turn up. My world shrinks further.

So in a mirror image of my childhood – the car will only be used sparingly. Just for the occasional short distance work trip and the school runs. A long distance concert trip is probably not a practical option.

My world has shrunk again but as ever we will make the best of it. Think our carbon footprint. Think more fun at home. Enjoy what we have on our doorstep.

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Sliding

So far Storm Dennis has been ok with us. So many have had it far worse than ourselves. Last time I looked there was over 560 flood warnings. Many houses are already underwater. So so sad and it’s happening more frequently.

Sometimes having a messy, pet wrecked garden helps. It’s makes it less obvious when a storm strikes. So as I surveyed the increased mess zone something caught my eye. Unbelievably during yesterday’s weather hammering two daffodils had decided to flower.

The photo is slightly out of focus as they are being blown all over the place in the gales. But it’s such a lift to see them. Let’s hope they survive Dennis.

This week is a school break. Son is adamant that he does not want to leave the house and our garden all week. Can’t blame him at all. He is so uncertain in the big bad world at present. The bridges he builds between his and the other world are looking particularly rickety and creaky. They are so fragile that he doesn’t fancy crossing them that often this week. Actually feels a bit like a game of Fortnite. An ever approaching storm cloud encircling out little world. If you play Fortnite I’m the wally who always gets killed within the first five seconds. My job is to make you look good.

My job is also to make sure our little world is as safe and as fun filled as is humanly possible. As hard as it may seem to some people in the media – kids with autism still like to have fun, do things they like and be happy. One of the reasons why the world feels like a scary game of Fortnite to so many good souls is that too many narrow minded reptiles in the media create the storm that others have to survive in.

Anyway let’s move on to have fun.

Today the grass is an absolute squelch fest. Your shoes immediately sink into inches of mud and water. So maybe it’s the perfect conditions for mud sliding. Let’s see if it’s possible to slide from our back door to the farmers fence. That’s about 15 paces and just slightly downhill. It’s a battle between man and boy. Between my huge backside and Son’s snow sledge. The loser has to take their chances with 5 potentially bad tasting jelly beans. Surely this time I have found a use for my donut fuelled butt.

So we operate in a small world for the next 8 days. I may struggle for new photos for the blog but let’s see what we can find. May need to delve into my dusty photo albums. Don’t worry no muddy butt photos are planned.

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When words fail

Tomorrow the next storm arrives with the threat of 36 hours of torrential rain with damaging winds. But on the bright side at least the ground is dry and not already saturated!!!!!!! Yes it just too wet.

The British are famed for talking about the weather. It’s always too cold, too hot, too wet, too windy, too foggy, too icy, too stormy…. Well at least you won’t find me always talking about the weather.

SORRY. But I’m British. I don’t have any problems talking about the weather.

School has now broken up for a week. It’s been a rough couple of months with incessant home work and exams. A week at home will do our Son the world of good. We have put the keys away and let’s see if we can do 10 days without using the car. Definitely good for the environment and a test of how well I am adjusting to this self contained lifestyle. It’s ironic that my partner really desired that isolated lifestyle yet I’m the one who is finally living it. She would love the peace and quiet reflection. That was founded in her religious beliefs. She came from a very strong Quaker family. Sadly I’ve been to far too many Quaker funerals over the last few years.

It’s strange I find it very difficult to talk or write about religion. I guess that partly comes from my Dad. He would drill into me the following words

Whatever you do there are three things you never talk about if you want to avoid an argument. Politics, Football and Religion….

Well before you ask – for me that is

Left of Centre (Labour), Newcastle United and Church of England.

On the first two we have a bit of a pattern. Labour has only won 3 out of the last 11 elections and Newcastle haven’t won a trophy since 1969. Picked the wrong side…..

So I can happily talk politics and footy but religion still makes me clam up. Sometimes rather embarrassingly. Several years ago I was invited by a fellow Newcastle Season Ticket holder to go to his daughters christening. It was happening a couple of hours before a match at a Roman Catholic Church. Perfect timing. It was a lovely service but then the congregation was asked to take Holy Communion. When I was asked I declined. I came out in a cold sweat and struggled to say I’m not catholic. In the end I blurted out ‘I’m the other side’. Understandable this produced a strange look. Poor chap probably thought I was a devil worshiper….

Even that brief last paragraph has unnerved me. So I tend to keep my religion and my views on it strictly to myself. Which is bizarre given my propensity to waffle – especially about the weather.

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Lakeside

New Years Eve. A walk to a local lake. For our Son a good walk as apart from a couple of anglers we had the place to ourselves.

This might have been the first place we walked to when we moved to the village. A time before parenthood. But parenting was at the forefront of our thoughts. It was the main reason we left the city. It looked a good safe place to raise a family. A perfect fit.

Fast forward far too many years and again I’m walking around this lake. This time as a parent. Still thinking about parenthood. Realising with hindsight what an excellent location choice we made. It’s perfect for our son. A landscape which can inspire dreams. Quiet. Isolated.

Yet even here sometimes it’s not isolated enough. Two anglers fishing at the far corner of the lake. A hundred yards away. Yet son still pulled his hood over his head and talked quietly. Just in case. It’s so difficult for him to interact with our society. Imagine how difficult it would be for him if we lived in a busy city. How difficult it is for him trying to learn in a school with 800 pupils.

Looking back to my life I can understand his anxieties. I can understand the effect those two anglers can have. I’ve always struggled in social settings. People thought I was outgoing and confident. They didn’t see the nervous kid with a stammer. The child only truly at ease when he was playing by himself. Only happy to laugh and joke when in small groups of trusted friends. Or within a trusted sports team where I would allow myself to take down some the self erected defensive walls. Yet throw in a stranger and I clammed up. I remember the teacher telling the class that the next day would be different. Kids from another school would be visiting us. The thought of strangers spooked me. The next day I bunked off school. As I walked towards the school gates I panicked. I spent the rainy day crouched under a bush. As an adult again I was often seen as the outgoing confident joker. Oh so wrong. Often my social skills needed to be fuelled with alcohol. Those antics masked my anxieties. I kept to a small circle of close friends. Avoided strangers. Constantly battling with my insecurities and nervous stammer.

These years later I’m still wracked with social anxieties. Now no alcohol to fuel the alter ego. So yes I can understand what our Son is going through. I’m no expert but what he has to deal with makes my struggles look like a cakewalk. So everyday I ponder on ways I can find to help him with his anxieties. Yet apart from Sport, Alcohol and hiding under bushes I’ve not been able to help myself. Maybe we could add – walking around completely deserted lakes to the list.

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Pesky New Year

A late evening walk. Not easy for our son. Full of anxieties. But he only had 36 hours to meet his goal for the year. Twelve new places visited in 2019. We had two more to tick off. Too many crowds at the places we ventured to over the last few weeks. So a walk in a desolate dark wood became the next best option.

New Years Eve brought a walk down a little used path. A path that took us to a couple fishing lakes. Thankfully few anglers today so we could have our space. Son counted this as his 12th new place visited. His goal achieved. Not an easy goal for him because of his social anxieties.

*******

Dad I’m going to set a target of 15 new places for 2020. Surely we can find 15 deserted areas. Maybe one or two places will be allowed to have a few people there. Are you going for any New Year goals?

Just my usual trying to end up looking like George Clooney.

Who is George Clooney? Is he cool?

He was Batman.

That’s cool enough. Don’t expect any help from me getting you into the Bat Suit.

No I suspect I would need scaffolding and a construction team for that.

*******

2020 goals……

The only thing I’m specifically aiming for apart from looking like a George came from a blog I was reading this week. It mentioned changing things up. So I’m going to do some writing which takes me out of my comfort zone. Not sure what yet. Maybe I will write a professional looking post. That will be a first. Any volunteers for the ghostwriter for that one.

2020 goals……

Apart from that writing one I can’t think of any new ones that will stick. This year it feels like just dusting myself down and going again. I do tend to struggle with Day 365 of the year.

New Years Eve. I hate it. I’m sorry I just can’t buy into the fondly saying goodbye to the current year. Let’s look at all the highlights. Then welcome in the new year. It’s a new beginning. Is it really. You wake up January 1st to find that your slate has not been wiped clean. Sorry that’s just me. I’m so pleased for the people who can see the New Year so positively. I just can’t.

This year we add the end of the decade. Pictures of people ten years ago and now. For us it would be a family of 3 and now a family of 2. Not going down that road tonight.

So for those who enjoy New Year then I wish you a really happy time. Hope it’s great for you. For anyone who feels like me – I send you all my hugs and we will hopefully reconvene on the other side of this pesky midnight.

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New couple in the village

How often do you overlook what is so close to you.

Today we ventured out into the mist and the rain. No car needed. A walk from the house. In just over an hour we were back home.

Son was convinced to go as it counts as a new place. That’s number 9 of the 12 new places he set himself for 2019. A place so close to home yet this was sons first trip here.

A time machine could take us back to early in the century. We had just moved into the house. Within a few days with a map in hand the new couple in the village set off to explore. Twenty minutes later we walked hand in hand through this very landscape. What a wonderful place. Splendid isolation – must come here often. My partner never went again. Now I’ve been twice.

It was an odd feeling. Not sadness. More puzzlement. Why did we not come here more often. A place the villagers label The Hag. Maybe it’s because it’s a bog fest. Maybe it’s because the local farmers come game shooting here sometimes. Maybe it’s because it’s just too close to home.

The place has an eerie feel. Beautiful yet very moody. Although that new couple in the village only came here once. I’m sure this place holds some hidden memories. For that reason it’s going to be put on my running routes list. Let’s see what memory gifts it yields in 2020.

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Kings, Queens and Telly Tubbies

4am When the world hopefully sleeps.

The bedroom door bursts open.

Sorry Dad can’t wait to ask. If you had to be related to a king or queen which one would you most want it to be and which would you be most embarrassed to be associated with.

Erm top of my head probably Queen Victoria and probably not mad King George III. How about you son.

Henry V would be so cool but he only had one child and he was pious so it’s not likely. Many would say King John as one your embarrassed with as he is seen as the most useless one but he was actually not as bad as that. Henry VII probably as his claim to the throne was illegitimate. Night Dad.

I then I had a bizarre dream about being late for a meeting with the Queen. A meeting which was to happen on a train in a random rainy town. And I got lost. At least Son had not asked about my favourite Telly Tubby. Getting lost on the way to meet my favourite Telly Tubby would have been a dream too far.

So at breakfast I decided to continue the historic theme. I convinced son to have a trip to see the beautiful ruins of a local Abbey. He wasn’t convinced but finally we set off. I really should stick to my level. The Telly Tubbies. We arrived to find the site closed until March and that knowing look from son. At least we got a few lovely views from the outside.

I gave our son the option of extending our trip but he just wanted to go home. Too many people about. That’s becoming an increasingly common comment from him. As the months go by he finds it harder to deal with social contacts. He can still cope with rock concerts. It’s because he thinks they are still very inclusive. Doesn’t matter what you sound like, dress like or look like – your just accepted. No condescending looks. It helps that it’s dark and noisy so it’s unlikely anyone will talk to him. He was also ok on our recent train night but that was onboard the train. Luckily no one was sat opposite us. On the platform he struggled. We basically stood inside a coal shed until we could board. He had been ok with the cinema but now if the screen has more than handful of people in then he can’t watch the movie. We were going to see Jumanji but the screen was half full and that was the end of that. At school he’s just not happy. The crowded school bus is becoming impossible for him. You can see the change in him when he’s back home. He’s confident and happy. Outside he’s nervous and wants to hide. As soon as we leave the front door his hood goes up.

I remember a conversation with a really good Child Psychologist who worked for a time with him. She thought that his social difficulties may well become more pronounced as he became a little older. She had worked with a number of kids a bit like our son and they had all found mostly happy life’s. But isolated life’s. One or two friends and some family contacts allowed into the inner sanctum. Pets and animals definitely. But the rest of the world – preferably not.

It’s early and things may change. He will follow his own path. I will be there as long as I’m needed. But it’s his own path and he needs to find the type of world he’s most contented with. A closed abbey with a handful of walkers being too busy is potentially an indication of the direction of travel. If that path takes us inevitably into a more isolated world then so be it. And for those interested my favourite Telly Tubby was Laa Laa.

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Just like that Tree

A couple of photos of a favourite tree of mine. And Captain Chaos – saves an extra special cock of the leg for this one.

It’s sits on the edge of a forest. It’s in a field all by itself. Is it part of the forest or does that 50 yards of separation make it a loner – in its own forest of 1 tree. I guess it once was part of the main forest but over years the trees around it have died or been felled.

There’s a photograph from our sons old nursery which comes to mind. I can’t share it as it has other kids on it and I don’t think it’s right to show it without their agreement. It was taken when our son had just turned four. He was a kid which every other kid wanted to play with. Up to that stage no real indication of Aspergers. In fact I really didn’t know what Aspergers was. The photo has all the nursery kids and nursery staff stood in a group. The Nursery Team photo. All huddled together except one small boy. Our son was stood by himself about 2 yards in front of everyone. Giving the camera a real Paddington Stare. They tried to get him into the group but he just kept saying ‘NO I’m fine here’. Unusual for him as he was normally the one hiding at the back with a hood over his head as soon as a camera was produced.

Was he part of the group or was he becoming a loner.

Maybe he thought he was the leader. Maybe he thought it was his moment to shine. Maybe he just took a dislike to the photographer. We will never know.

A note was shoved through our letter box yesterday. The Village Committee are holding a village Christmas party at the little Village Hall. Children can come so WE could go. But I’m not sure I feel part of the village these days. The friends we had have all left now or passed away. The few I still know are elderly Residents and they will either be off to spend time with family over Christmas or are not interested in socialising anymore. So if we did go WE wouldn’t know anyone there. Part of me is saying WE should go as it’s a chance to meet new people. But WE won’t in the end. Son is adamant that he would rather do a spelling test than go to that party. A large part of me shares his view. Stood in a cold village hall with people who either have no idea who I am or with people who I share nothing in common with. They live in a different world. A world of dinner parties, bridge Clubs, Conservative Party Socials and going pheasant shooting at the weekend. You see the problem is that although I am living within yards of these good people – I am not really part of them. I once was but those close to me have either left or died. Slowly isolating me from the village. Just like that TREE. Hopefully the dog doesn’t cock his leg on me.