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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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Christmas Naughty List

Unbelievably Santa did not give Captain Chaos coal for Christmas. How did he not make the naughty list.

He got more presents than I did. Even the neighbour whose prized lawn he’s dug up sent him his own card. Unbelievable. Actually it’s not that hard to understand. He brings such joy, fun and life to the house. Humans really don’t deserve dogs as friends. We need to learn from their unconditional love.

No visitors, no phone calls. Splendid festive isolation. Perfect for our son. The dad from a few years back would have balked at that. That’s before Aspergers entered our family. Now isolation is the new rock and roll. Thats where a Captain Chaos comes in. He fills the gap created by the isolation. He more than fills that gap.

Dad I thought you had bought yourself a present. Are you not going to open it.

Maybe a bit later.

Looking at that puzzled look on your face you have lost it haven’t you.

Yep put it in a safe place so I wouldn’t lose it. And I can’t remember where now… Don’t you just hate that.

*************

Anyway the missing present is not missed. Too busy trying to duck and weave to avoid a flying well chewed Christmas Cuddly Robin. This is actually the quiet before the storm. Captain Chaos has still got to open his odd looking present. A 3ft long squeaking cuddly snake. Really wish my missing present was a set of ear muffs and maybe a safety helmet. Think I’m going to need them.

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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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Music at Christmas

Christmas and Music go together. For some it’s carol singing. For some it’s festive number 1 pop hits. For some it’s relaxing classical music. For others it’s LOUD rock music.

The last week has seen not one but two concerts.

The first required a trip over England highest motorway to the other side of the country. To Manchester. This was to see Sons favourite band Alter Bridge. On this night they were supported by the wonderful Shinedown.

Lots of people but thankfully son coped well but it did require the full hood for the entire night.

Dad did his normal trick of keeping the ticket costs manageable by buying discounted restricted view tickets. It’s interesting that in our restricted view section it was mainly families. All probably dealing with the same financial concerns.

Son really really enjoyed himself.

Then 2 days later we had another concert this time in our local city. We don’t often get decent bands but it nice when we do. This time it was The Darkness.

Such a good night. Very loud and they are so entertaining. Very loud and very funny. They even did a Christmas song. The band wouldn’t start the song until they could see everyone holding hands with the persons next to them. Son was ok as he had me and his uncle. Meanwhile Dad had a liberating few minutes holding an enormous bear sized hairy bikers hand.

I often talk about how tough Dyslexia is. The problems it can cause. But occasionally having a young son with dyslexia is a much needed parenting help….

Posted on by bereavedandbeingasingleparent · 79 Comments

Need the full picture

Glorious weather for this morning’s run?

Looks can be deceiving. Looks good with a creative but of zooming. The actual full picture taken seconds after the first photo tells a different story.

Actually it was a cold, dark and damp run. Only seeing part of the picture can make such a difference.

One of the current on going battles with school relates to our sons dyslexia. What support does he need when answering written class questions or when he’s taking tests. At present he receives no help with reading questions or is given no additional time. The schools argues that because his marks are generally really good then he clearly doesn’t need help. Interestingly school seem to think his marks are too good to warrant help and yet he is classed as low attainment. The other reason school argues for not providing any help is that he doesn’t put his hand up and ask for it. Seriously which kid is going to put his hand up in a class of 30 plus pupils and announce that I can’t read this. It’s not going to happen. I don’t think I would put my hand up if I was in that position.

Let’s look at a few of questions our son has got wrong recently.

How many sides and angles does a parallelogram have?

The teacher was surprised he got this easy question wrong. Now let’s look at how our son reads the question. Remember with his dyslexia he can pick up no more than about half the words with the other words he fills in with educated guesses or leaves them blank. So the question he worked with was

How many sides and a……. does a p………………….. have? He correctly guessed the missing a was angle but the p was more of a problem. Is it parallelogram or Pentagon. He guessed Pentagon as he thought parallelogram would be too easy a question. He answered his maths correctly but got the actual question wrong. No marks. So let’s look at another maths question.

In a sale, the price of a notebook is decreased by ten per cent. What is the new price if the old price was one pound twenty pence?

Need my calculator for this one. Now let’s see the question our son read.

In a s…, the price of a n…………. is d…………. by ten per cent. What is the new price if the old price was one p…….. t………. p………? Suddenly this question goes beyond a calculator. He guessed the d was discounted which was ok but the price he used to work out the answer was one pound thirty pence. He used the right calculation method in his head but on the wrong amount. So he got no marks. His mathematics was perfect but he was penalised for his reading skills. Ok let’s look at a science question.

Tissue is a structure made of many cells performing a similar function and different tissues do different jobs. Which tissue carries the fluid containing nutrients, oxygen and waste products?

This question made me think. Now let’s try to answer the question our son could see

T……. is a s……….. made of many cells p………… a s………. function and different t……… do different jobs. Which t……. c……… the fluid c…………….. n……….., oxygen and w…….. products? To me that now becomes almost impossible to answer. He correctly guessed the T was tissue but was not sure as it could be tongue. He guessed the W was water. Unsurprisingly he didn’t answer this question just leaving it blank. Let’s look at one more question.

Refer only to Paragraphs 3 to 9. How is the author trying to build tension. What emotions are the two Detectives experiencing?

I will address the elephant in the room soon but our son read this question as

R….. only to P………………. 3 to 9. How is the author trying to build t………. . What e……… are the two D………………… e…………………….? Son eventually worked out roughly what the question was asking but it took him quite a bit of time. That’s limited exam time used up before he can even start thinking about answering the question. And the elephant in the room. That’s someone with dyslexia expected to read two pages of literature without help…..

This just does not feel like a level playing field. Not a fare chance. I know school argue that he’s doing ok in tests. But how good could he do with support or with straightforward adjustments. We just don’t know at the moment. Maybe this is his level. Maybe his level is higher. What’s the harm in giving him and kids like him a chance. That question is aimed at school and more importantly the Schools Minister. I wonder if they properly see the big picture.

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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….

Posted on by bereavedandbeingasingleparent · 60 Comments

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.