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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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Waiting

Every morning we get a scene from Hitchcock’s Birds. Hordes of feathered friends waiting for the me to get my act together. Come on it’s about time we got breakfast. Just remember what happened in The Birds. No cute Angry Birds here….

We watched Angry Birds 2 a few nights back. It’s very funny. Red and Big Terrence are my new role models. The Birds in the Hitchcock movie are just a bit too Deadpool for my liking.

Everyday the garden birds wait and every day it’s worth it. Free, easy and safe food within feet of their nests. So sometimes waiting is worth it.

We finally managed to get our sons Education and Health Care Plan approved a few months after WE lost his mum. I remember a few parents saying well that’s the job done, your quids in now, it’s top class education for your son now. You could feel the sarcasm dripping off the words. Many parents buy into the idea spread by the media that kids with learning disabilities are taking money off their kids education. Schools are short of money because of these privileged kids. And anyway what’s the point – they are just low attainment. So undeserving. Just give the money to the normal kids…..

Welcome to modern, inclusive, caring Britain…..

Thankfully I didn’t assume it was job done. Now the real battle had begun. Trying to get any meaningful support from our factory farming education system. In practice the small level of funding nominally provided to our son effectively bought him a place in a secondary school. Nothing else. The money is put into the school budget for general classroom Teaching Assistants. These Teaching Assistants then are a resource for ALL kids in the class. The Teaching Assistants are not trained in learning disabilities. The school does have one who has experience in the area yet she has never spent anytime with our son. The school does not provide any additional help to kids like our son. It so much easier to label the kids low attainment and do nothing. So we get into a never ending cycle. The media vilify kids with learning disabilities. The government never contradicts these miss truths and the schools continue to do provide any support. The kids fall further behind. The parents pull their hair out.

So we are still waiting. Still waiting for progress. Still fighting battles. Still listening to the campaign of hate promoted by the media. Trying to get any help which might give our kids a chance. Not asking for special treatment. Just an opportunity for a decent education. So many kids are suffering in silence.

Still waiting. But there is now a sobering thought. A thought to take into 2020. Many of the current failings with the school system can be traced directly back to government policy and educational dogma. Ten years of taking schools back to traditional teaching practices. Back to Victorian values. Back to a time of unmitigated suffering for any child not fitting the expected mould. NOW we have 5 more years of this Government. A government proposing an even more stringent traditional approach. But here’s the rub. In 5 years son will be leaving secondary education.

We wait. So we probably will be still waiting in 5 years.

So as we move into 2020 the conclusion is that the school system will will not help kids like our son for many years. It will never help our son. It has and will continue to fail him until he leaves. I’m still trying to get my head round this. We will keep fighting but with little chance of any progress. So we are now in Plan B zone. What is Plan B? I’m not sure yet.

Sometimes waiting is not worth it.

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Breaking his body

Running past this monumental feels like a daily privilege. Must admit running anywhere these days is a privilege.

The last two years brought injury after injury. Clearly doing the same thing over and over again was not working. Finally the penny dropped. But it did take the doctor warning me that actually I might have to PERMANENTLY STOP running and working out for common sense to finally take hold. Change was needed. A new exercise approach was put in place. Alternate Home CrossFit days with a day of running or cycling. No same exercise on two consecutive days. Sunday is a gentle exercise bike session and yoga. No pre exercise stretching warmup. If an exercise is causing the body pain stop it for a few days. If the exercise hurts again stop for a few weeks. If it hurts again then ditch the exercise. THATS IT. So far it’s working (touch wood). Four months of uninterrupted, mostly pain free exercise.

Change worked.

Our sons Aspergers journey continues. It’s a journey without a map. Who knows where it may lead. But I do have a gut feeling. The health professionals have talked about the possibility of our son becoming increasingly ill at ease with social interactions. Although from the age of 5 he has always struggled with this 2019 certainly has seen this intensify. Increasingly he just wants to spend his time in the safety of his home realm.

Although he seeks isolation from the outside world he struggles to be on his own. In our one parent, one child, mad pets kinda world that in practice means he struggles to be without me. With the advice from his health experts we have tried to gradually change things up to help with this. But it hasn’t worked. We tried things like him staying on his own at the house while I took the dog for a quick walk. Even though I would tell him the route. Stay in the village. Talk to him on the phone while I walked. The brief periods of solitude would throw him into a nervous meltdown. Any longer than 10 minutes and he would have to come looking for me. The only thing it achieved was to spike his anxiety levels. We decided to abandon the changes.

Whether this is Aspergers or whether it’s to do with losing his mum or both – who knows. But currently as a single parent I have to make the necessary adjustments to work around these constraints. One of which is that when he’s not at school my exercise programme is tied to the house or garden. Hence that rather puzzled look I got on Saturday. A group of walkers giving this rather odd looking chap a puzzled look. Even standing to watch for a few seconds. In the pouring cold rain why is a man in his garden dressed in shirts and a T-shirt jumping on and off an exercise bike to throw a 20lb kettlebell about.

It’s because I’m a single parent who can’t leave the house who has found a way to keep himself fit while not breaking his body. At least allow me that.

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Names on Christmas Eve

Christmas Eve has been very damp and exceptionally grey. No colour at all. So it called for some colour from a couple of weeks ago. Today this is as colourful as it gets. I can’t think of a name for this at the moment.

As I’ve got older I’ve become more used to dealing with the inevitable life curveballs. But not completely. The dreaded demon curveball still gets through.

Dad if I had been a girl what would you and mum have called me.

I couldn’t remember and that’s a great start to 24th December. My defence is that we found out very early on in the pregnancy that it was boy names only. But I still should remember that. Those fun brainstorming seasons for two unprepared newbie parents in waiting. But nothing. It felt like I had let down our son and lost another important link with my partner. It hurt. It hurt like mad. Yes you can hurt at this time of year. Sadly so many do. Sending everyone of you a hug.

To try and clear my head I went outside to do my odd outside thing. Push a wheelbarrow around the garden a few times. It’s hard work but that’s the point. In the middle of the garden was a stray Santa’s Hat – presumably courtesy of Captain Chaos. So as the effort started to do its job I donned the slightly soggy hat. Wheelbarrowing in the rain. Like to see Gene Kelly’s face if that was the song he was given all those years ago to dance to. Wheelbarrowing in the rain did its job. Mind reset. I have one job and that is to make our son happy. Make him happy this Christmas. Need to get back to my A Game.

“Son when was the last time you had whip cream direct from the canister into the mouth”

Never Dad.

“Well you are now”

So that’s what we did. Soon this was escalated to shaving foam covering my entire face. It kinda suited me. Still no George Clooney but a vast improvement. A look all the more better for the sound of laughter filling the house.

Dad do you fancy a first to hit the crossbar challenge.

Followed a few minutes later with

Dad you do know it’s first to kick the ball onto the goal crossbar not first to repeatedly kick the ball into next doors garden challenge

As I spent a quite a bit of time retrieving the football from next doors garden I got to spend a bit of time noticing how a garden should look like. Very neat and tidy with immaculate lawns. Well almost immaculate. A couple of ugly holes courtesy of an escaping Captain Chaos. That’s compared to our garden which is more akin to a ploughed farmers field courtesy of moles, son and CAPTAIN CHAOS. Maybe 2020 is the year of the NEAT GARDEN. More likely it’s the year of the NEED A NEW GARDEN. So as the ball sailed over the hedge again son shouted.

Dad what would you call me now if I was a girl.

This time the curve ball missed.

“Laa Laa Po Dora the Explorer Elsa Tinkerbell”

Really Dad. All those names.

“No son Dads fibbing.”

Good I was getting worried. It’s a joke then

“Yes”

Maybe you could call me either Daphne Blake or Velma Dinkley

“Jinkies that’s a good idea”

So a day that threatened to be scuppered on a girls name ended with laughs about a girls name. Like many folks I operate on such fine margins. With so little separating happiness and sadness. I really hope this Christmas you find happiness.

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So which view

Looks wonderful yet a couple of yours later stood 30 yards down the path and it’s looking not so hot. Two different views.

School argues that son is doing really well. His behaviour is excellent. He works really hard. His grades are good. Often best in the class. He has plenty of friends thanks to the actions of the teachers. Last year one teacher told us that in her subject he should really be in the top set. No additional help required. Yet when I ask why other kids are moved up but never our son the response is so different. Oh he’s low attainment, the bottom class is right for him. Other kids are better at reading. So which is the real view then.

One minor point. Just sitting son next to random kids doesn’t count as establishing real friends.

I had a chat with our sons doctor last week. We discussed how son was increasingly struggling with social interactions. How he tried to avoid them. His Doctor said that it was important that he wasn’t pushed into doing anything he wasn’t comfortable with. Make progress at his own speed and avoid being put in highly stressful situations. He also stressed that he had written to school asking for dyslexia support for son and also stressed that any support should not take place in the classroom (it needed to be undertaking in private). However. School are insisting that as part of English son has to regularly read out sections of text to the wider school audience. It will be good for his dyslexia and his personal confidence. They also argue that it will help him integrate. So which view is right.

I was reading a blog yesterday which talked about grief and Christmas. It talked about this time being the perfect for renewal and celebrating wonderful memories. It’s a wonderful time. Yet the next blog I looked at talked about the desolation of Christmas for the bereaved. How it was a time for trying to forget and just surviving. So which view is right.

An American Doctor was on the TV talking about Autism. He had been working on a cure. He was confident that in the coming years Autism would be completely treatable. A burden on society, parents and individuals would be removed. But many like our son have a different view. It is who he is. It’s his unique personality. He doesn’t want to be cured all he wants is society to be more understanding. So which view do you trust.

My partner was in coma for the last few days of her life. At her bedside I whispered to her that I would stay faithful to her for the rest of my life. Partners for life. It was the right thing to do. Now a few years down the line what happens if I meet someone else. Say yes or no. Two different views.

Some views can be questioned. Some views can be argued with. Some views can be agreed with. Sometimes there are no right or wrong views. Sometimes seemingly genuinely held views are seen by others as dangerous and downright wrong. I will let you make your own mind up. You probably can guess what I think on some of these. At least one of these I really can’t make my mind up on. Maybe I never will.

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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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Christmas Diaries 1

It’s been a grey moody day. It never once looked like clearing. At least it didn’t rain for a change.

The zero based hours contract gave me me three hours work today. For the next couple of weeks any work demands will be minimal. Not great for the bank account but it allows me to now focus on our son. So with a couple of days before the school breaks up – Christmas is about to start in earnest. So an early warning. You may get a few Christmas Parent Diary entries coming your way. Hopefully most will focus on the happy side of life. It almost certainly will feature a few cooking disasters. In fact let’s sort the first diary entry out right now.

So after the work dried up it and the grey run was completed it was time for a bit of baking. Time to make a stunning gluten free stollen cake. A few chaotic shopping trips had stocked up the larder with all the ingredients. This time it’s going to be baking heaven. Hang on a minute where’s the marzipan. As I love the stuff I bought 4 slabs worth. But where are they. Absolutely no sign. Don’t you just hate it when that happens. No problem I will just pop to the local store. Don’t stock it but they did have infeasible amounts of glazed cherries. So off to the supermarket. How can a supermarket run out of marzipan. How can the only other store reasonably close by also have none in stock. I gave up so let’s just make a Christmas cake. Three hours later I’m looking at a baking abomination. Crispy on the outside, undercooked on the inside and a ginormous sinkhole at its centre. The birds will eat well tomorrow.

So ends the first Christmas diary entry. But let’s do the diary preface now.

Christmas can be lovely and fun but wow can it hurt. It’s one of those times which naturally draws you to what you have lost. I was reading a blog which talked about this in such a haunting way.

All aboard! The holiday struggle-bus is pulling into the station, and I’ve got a ticket to ride.

That bus hit me yesterday. I was simply wrapping our sons presents up. Instantly I’m taken back a few years. Christmas music on. A couple of glasses of wine. My partner a ninja master at unwinding the cellotape and securing the edges of the wrapping paper. Unbelievably I was an expert at finding the best way to wrap the presents up. The perfect production line. So effective and so loving.

Now I sit on the floor with a tea and whatever is on the radio. To be honest I’m not listening. The presents are still being wrapped well but the cellotape has won the battle royal. It’s wrapped around my fingers, on my clothes, stuck to furniture and yet refusing to go anywhere near the wrapping paper. Love and happiness replaced with frustration and sadness. It’s never going to be like it was. That love is not going to be replaced. Those shared dreams are binned. It’s a truly sickening feeling.

It’s so easy to forget that this can be such a tough time for so many you are bereaved. For so many in pain. For so many without anything. For so many who are lonely. My heart goes out to you. You have a soulmate here.

Yes over the next few weeks this blog might get a bit silly. I really hope it does because it shows that I’m doing my only important job. Trying to make Christmas as fun as possible for our son. But underlying it will be someone still grieving what has been lost. My hope is that some of that Christmas magic which hopefully is enveloping our son will rub off on me. Showing that you can grieve but it’s still possible to have fun. If it works for me I really prey it’s rubs off on you as well.

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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.

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Pink

Colour hanging grimly on in Yorkshire. This is an oasis surrounded by unremitting greyness.

Truly dreadful weather day. The wind has been blowing horizontal rain at the back door all day. Currently on the third towel trying to keep the utility room dry. It’s a bit of a losing battle. Let’s hope it’s the only losing battle today. I went to vote straight after the morning’s school run. Let’s leave it as that. Tomorrow will either be a hopeful post or a monumental rant of a post. You have been warned.

I’m writing this as son sits on the sofa watching a documentary on his tablet about Auschwitz. Yesterday he watched a few videos on the plight of the Palestinians. Puts everything into perspective. The fact that the youth of today watch this gives me hope for the future. Let’s hope we leave the next generation with a habitable planet so that they can mould a far better world.

With work for the day completed I set off for a run. Better described as a splash. Wow it was wet. After a few miles my poor hands were frozen so I foolishly put them in my waterproofs pockets for a warm. Rather than finding a haven of warmness they found a hidden pool of cold rain water. Lovely. I’m pleased that I opted for shorts. Not sure I fancied my leggings shrinking. My mind goes back to a mountain marathon during my university days. A six hour night drive to the Highlands of Scotland ready for the 9am race start. Everything was going so well until we arrived and changed for the race. I had forgotten my shorts. 30 minutes to the start time and the nearest sports shop was 20 miles away. The strange looks I was was getting as I walked around the runners saying ‘have you got a spare pair of shorts’. Looking like I would have to sit out the race when my race partner came to the rescue. ‘I can wear my shorts and you can try to use my leggings’. The problem was my partner was called Suzanne and she was somewhat more petite than me. To much laughter on her part I squeezed into the tight leggings. I was the only male competitor running in bright pink. It was also the only competitor that completed the race in with tears. Must admit the constrictor leggings did wonders for my dodgy hamstrings. But since then tight leggings have gone nowhere near my nether regions.

With my wet run completed it was a quick change and off on the school run. As a I arrived a very sodden Son trudged across the car park still in his sports gear. You could see him shaking with cold and the water dripping off his clothes. With the car heating full on he tried to get changed into his dry school uniform.

*****

“You’re drenched why didn’t you get changed out of your wet kit”

I didn’t want to risk it. We only get 5 minutes to change. If we are not out in that time you get a negative from the teacher.

“Have any kids been given negatives”

Virtually every week at least one kid gets a negative. It’s unfair especially as it’s the last lesson of the day.

*****

And another telephone call will be made to school. Five minutes. When I played football it would take me at least 10 minutes to get changed. It took five minutes just to prize my constrictor pink leggings off my butt all those years ago. Five minutes sounds tight before you factor in Aspergers and Dyspraxia. Getting changed does not come easy to him. School have been told this on several occasions by me and in writing by the Paediatrician. So much for the school making positive adjustments to make his school life comfortable and enriching.

It’s the frustration felt by far too many children and their parents. Everything has to be fought for. It’s a battle to get a diagnosis in the first place then the real fight starts. Trying to get any positive adjustments and help. As much as the media try to paint a different story … we are not looking for special treatment … we just want our kids (all kids) to get a fair chance in life. Is that too much to ask for.

*** late addition *** it WILL be a monumental rant….

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Change

That’s either a years supply of fire wood or one monumental nature hotel. I strongly suspect it’s not for nature. It’s strange how things can change. One week a pile of wood is home to nature the next its ashes in a fireplace.

Immediately after my partner died I suddenly started to experience significant isolation. Largely cut adrift from society. Your life becomes intertwined with that of your partner and your own sphere of social contacts gradually drops accordingly. Rupture that partnership and you rupture your social life. On most days my only opportunity to socialise was at the school gates. The daily school run became a source of much comfort. I could talk to other parents and son would interact with the other kids. Being a small school really helped him.

Fast forward a couple of years and the school run experience has completely changed. Bigger school. No gate anymore. The parents who do turn up stay in the car and wait for their son or daughter to find them. No one gets out of the car. Very isolating.

Then you see the kids leave school. Mainly groups of kids. Twos, threes or more. Occasionally you see one walking by themselves. Son always walks by himself. Suddenly it feels a very very dispiriting experience. It wasn’t supposed to be like this.