Posted on by bereavedandbeingasingleparent · 58 Comments

Another odd day

Another odd Yorkshire day. Mixture of sunshine and then chucking in it down. Warmish then freezing. Still and then gales. But it wasn’t just the weather that was odd.

This morning started with a broken works computer system. Won’t be fixed until this – Saturday so that’s several late nighters then to catch up. Didn’t really want any sleep this weekend.

Next came a heated exchange with school. Due to a school admin error son never got his Year 8 injection. Not an issue as the school nurse will be returning next year BUT just a picking minute. If parents or kids make one mistake it’s an automatic negative yet no sanctions on school when they mess up. Apparently in schools case it’s just one of those things as mistakes can happen. Have you had one of those calls where you can feel the blood go from boiling to nuclear. One of those calls where you are increasingly squeezing the life out of the telephone. This was certainly one of these.

The call rapidly moved onto the lack of support for our son and the refusal of school to move him (at least in a couple of subjects) to a higher set. Last school year his Form Tutor told us that he was performing so well even without support from school. She was one of the few teachers who seemed to understand dyslexia and autism. As his marks were in the top 2 of the class then he should be moved up in at least 4 subjects. Unfortunately she left in the summer. On the call school said the Form Tutor was incorrect and it is not just marks that determine academic performance. Now apparently he is viewed as being in the lower middle of his class with many children ahead of him. In effect he is a low performer and any moves up in set are out of the question. The call ended (to the phone handset great relief) with a terse Dad demanding another meeting with school and the council. Not that it will do any good.

Needing to cool the raging core meltdown within I went for a run. A couple miles into the run a hot air ballon appeared over the trees. A quick photo and off I set again. Head down.

Running through the woods I started to hear voices. But nobody was insight on the path. Oh no it’s those Viking Ghosts. Then a roar of a burner above. Now the balloon was directly above and just above the tree line. I’m being buzzed by a mad balloon pilot.

Then a shout and they started waving at me. You wouldn’t be waving if I had a pellet gun with me.

Then it slowly started to rise and off it went.

Just before school finished I had a dreaded dental appointment. Might as well buy a yacht in Monte Carlo – unbelievably expensive. I ended up being told off for trying to be healthy. I have always had lemon water when I am training. Even more since I’ve stopped drinking coffee. The Dentist was not impressed. Apparently lemon (even watered down) is really bad for the enamel. Good job I didn’t mention the super strength lemon drink I have when I wake up. So now I am supposed to switch to Cucumber Water or Thyme Water. Cucumber Water taste like the liquid you drink as the last resort if your stuck in the desert. I’m only guessing that as NO I have not drunk my own …….

One last odd twist. Son came back from school with a letter. The letter was issued to son before my heated argument with school. In a few weeks the school is having an awards night. And son is getting an award for the number of merit awards he got last school year. This is fantastic. BUT. Not sure how this tallies with the schools current assessment of him.

Definitely an odd day.

Posted on by bereavedandbeingasingleparent · 26 Comments

Commitment

This photo is from a couple of days ago. It was reasonable weather.

Over the last couple of days the weather here has been a little more damp. The Photograph below from The Guardian sums up today’s dampness. Welcome to Yorkshire – the worlds best cyclist competing at the UCI World Championships and enjoying the welcoming Yorkie weather. As my Dad would have said that will put hair on their chests. Bet the poor riders didn’t expect to be riding through lakes. Amazingly the race was completed. Thats commitment for you.

Parenting is about commitment. Even I realised that before our son was born. The bizarre assumption we made was that at some stage the kid(s) would fly the nest and we would go back to something like our old life’s. Maybe after school, after college, after university, maybe a bit later. But at some stage it was happening. At some stage parenting becomes more part time and the stuff we had to park can be resurrected. In my case socialising with friends, climbing, playing sport, career, astronomy….

“WE” would get our life’s back – yes I never envisaged one tragedy…..

But maybe the full time parenting commitment may last longer. I remember our sons lead health professional telling us

“It is possible that your son will be largely independent at some stage. However on the current evidence this might be the least likely outcome. You need to prepare yourselves that he may find it very difficult to live independently at any stage.”

As a family we are so fortunate. Son is making great progress in many areas. So many families don’t get this level of progress. But there are clear areas where progress is not being made. We have to be realistic that progress may never be made. Support may be needed life long. That’s a sobering thought and raises so many knock on considerations.

Those parts of my life I assumed would restart at some stage may in fact not happen. I don’t like admitting it but this thought makes me sad. But that’s life. I now realise bad things happen and you have to deal with them. You never know son might one day take up something like climbing. I suspect not in the case of climbing. He is a natural risk assessor. He might make sufficient progress to become fully independent. We just have to see what happens.

I know I’m not the only one who is in this position. I was reading a similar thing from a blogger I really respect just the other day. Parenting sometimes doesn’t work out the way you have imagined. Parts of your world are lost. Dreams become unattainable. Although parenting is the best gig in the world it is so hard to explain to others how part of you can still feels so sad.

I now know that this is parenting. Its about sacrifices. It’s about commitment.

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Is Phonics the wrong path

Our much beloved School Minister (and first holder of our Boris Numpty Award), Nick Gibb declared “the debate is over”. He was referring to his decision which meant the all kids in English schools would have to learn reading by phonics. Kids are taught to break words up into parts and then learn individual sound parts. Previously kids were taught with a mix of phonics and the old approach of memorising the whole world.

Interestingly our School Minister who is an expert in all things education has no practical experience of teaching. He is an accountant. Which makes me equally qualified to set school policy….

Yes phonics does work for some kids but not for others. For example many kids with dyslexia or kids on the spectrum struggle to decode words and then struggle to produce the right sounds for each individual part. I’ve tried phonics and I struggle with it. It’s a disaster with son. We could be trying to use phonics for the next 100 years and it will still not help our son to read.

We all must have done this. Set out for a nice walk. In the case of the photos across the stunning North Yorkshire Moors. Then you come to a crossroads. Paths going in all directions. You look vaguely at the map. Try to look like a professional. Fold up the map carefully. Then go Eeny, meeny, miny, moe and randomly guess the right path. In my case it is usually unerringly wrong. After several miles you get that sinking feeling – wrong path.

Actually wrong path is not the best description. It will be the right path for many. It will take them to their desired location. But for some (like me) we could go down this path for years and it will never ever get us to our desired location. So what I need to do is get off this path and find a path which works for me. That is the sensible thing to do. As a I am not that sensible I won’t retrace my steps back to the crossroads. I will try to break trail in a different direction in the hope that I will find the path for me.

Now according to our Schools Minister all kids should go down the same reading path. Unfortunately doing that will guarantee that some kids never do arrive at their destination. Endlessly walking down this path, getting lost, getting disillusioned. That’s what happened to us. We blindly went down the phonics path and basically got no where.

But then we stopped and said stuff you Nick Gibb. And we broke a new trail.

  • We started learning some of the most common words the traditional way. Son would memorise the whole word.
  • We started playing around with various learning to read games on the internet.
  • Using trial and error son would try to use app’s like YouTube, Google Search or games like FIFA by himself.
  • Son would watch TV shows with the subtitles on. Movies like the Avengers were perfect. He knew them virtually off by heart. So he could focus on the subtitles and start to make links.
  • He would relentlessly work on his coordination. He would read a grid of letters while clapping his hands. He would bounce a ball while trying to learn and read words.
  • We would jointly read books. Normally Mr Men books. They were just the right length and fun. He would join in when he wanted to. I would never correct a mistake. He would process that himself.

The new trail has started to work. We haven’t reached our son’s destination but it feels like we are heading in the right direction at last. Enough for son to call himself now – a reader.

So I hope our Schools Minister finds his own path. Preferably takes him a million miles away from this countries classrooms. Then we can get back to trusting parents, teachers and kids to pick the education path which best suits them.

Posted on by bereavedandbeingasingleparent · 44 Comments

Just be happy

I was hoping to have a trip to see friends this evening. Its been a long while. Going to see a footy game at teatime seemed an ideal opportunity. Son was primed to spend a few hours with his aunts. But with Autism you never get your hopes up too high. Same with being a single parent. Things happen. Your needed elsewhere. Change of plans. So it’s a night of movies on the sofa. Son is in charge of the programme so can’t rule out having to endure Alvin and those pesky Chipmunks. It’s going to be different from the original plan BUT it’s going to be lovely. A blessing.

This brilliant quote comes to mind.

“How beautiful it is to find someone who asks for nothing but your company” – Brigitte Nicole

Posted on by bereavedandbeingasingleparent · 76 Comments

Autism and football

The Blueberry Plant is anything other than blue now.

That looks too like a Liverpool and Manchester United shirt for my liking. But it’s still better than that black and white barcode which your team wears. Watching barcodes run about a pitch must give you headaches.

That Football team of mine just gives me headaches period.

Son has set his heart on playing football for a team. Over the last few months we’ve tried to kick as many footballs around as the weather has permitted. It hasn’t been easy for him. Difficulties with coordination makes playing any ball sport a tough ask. That’s the issues facing many kids with Autism and Dyspraxia.

But there is hope. For a start dyslexia is not a barrier to sport. So many positive examples.

  • Kenny Logan – 70 Caps for Scotland (Rugby Union)
  • Scott Quinell – multiple caps for Wales in both Rugby Union and League
  • Lewis Hamilton – 5 time F1 World Champion
  • Magic Johnson
  • The great Mohammad Ali

In terms of autism it allows you to see the world in different and imaginative ways. This can be such an advantage in sport. Psychologists believe that some of the greatest sporting talents may be on the spectrum. They can see opportunities that other teammates just can’t pick out. It’s speculated that one of the greatest footballers on the planet (maybe the best) is on the spectrum.

Our son is tall for his age and very slim. He seemed the perfect shape for a modern style goalkeeper. So that’s what we started with. This also made it easier as we could just focus on his hand to eye coordination. For years he couldn’t catch a ball. But for ages now he has been bouncing a bouncy ball on our pavement. With hard work he now has really good catching skills. Then he started trying to catch a tennis ball while bouncing on his trampoline. Again after a lot of hard work he now is great at diving and catching one handed. So the next stage was to change the bouncy ball and tennis ball for a football. Quite quickly he managed to start catching two handed.

A small goal was bought for the garden and I started hitting some soft shots at

him. With hard work he can now dive and make some great saves. He’s now better than I was at his age.

But now he wants to see if he can play as a midfielder.

That would be cool dad.

This is a harder challenge for him as he still struggles coordinating his feet to kick a ball properly. But let’s see what we can do about that. Any skills he learns with his feet will be useful if he goes back to goalkeeping as these days they need to be comfortable passing and dribbling.

This year he has started going to the football club at school. It’s a steep learning curve. Suddenly it’s not just his dad, the dog and the ball. It’s lots of moving bodies, so unpredictable and loads of shouting. The shouting really disoriented him on his first session. He played one short game in midfield.

Dad I didn’t touch the ball but wow did I look good…. (said with a smile)

He went in goal and made some good saves but

I took a goal kick but the defender didn’t see me pass to him and the striker got the ball and scored. The teacher shouted that it was my fault.

Unfortunately too much shouting and blame goes with kids football in our country. Kids should be encouraged to try things, make mistakes and learn from them. Unfortunately too many are scared of making errors. You don’t make dreams come true by shouting at kids. At least son could see the wider picture.

Typical the other team scores and everyone blames the keeper even when it’s not his fault. What did you do when they blamed you for letting a goal in. I bet you let too many goals in.

Oh I just smiled, clapped my hands and immediately forgot about the goal. You move on and think about the next shot. (That’s not the whole story. I was a bit of a hot head back then and I would threaten to stick the ball up the backside of anyone who blamed me. But I won’t tell him that.)

So fingers crossed for the next club session.

Posted on by bereavedandbeingasingleparent · 48 Comments

Clueless

It’s been a clueless type of day.

The company I have been doing some work for asked me if I would phone up the Brexit Helpline to ask some technical questions. Apparently because I talk tosh they thought I might be better placed to understand the helplines answers. I won’t bore you with the whole conversation but basically this was the nub of it.

Can I ask you some technical questions relating to Brexit and my company?

Please do. That’s what we are here for.

If we have staff who need to work in the EU for a short period of time what are the new regulations we must observe?

Don’t know

If we undertake work in the EU but need to employ EU based subcontractors what are the tax implications?

The current tax and excise regime will change on the 31st October. You will need to start planning for the changes now.

Yes I realise that but what will be the new regime.

It’s still being formulated

If we have web based sales to the EU what will be the export tax position?

Don’t know.

And on and on. To all my questions I received three basic replies.

  • We leave the EU on the 31st October and things will change. You will need to plan.
    The Government is still working on the details.
    Don’t know.

Anyway it proves that Brexit is a typo. It should be Breshit….

Absolutely clueless

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

I spoke to school again about our son. He’s had zero additional help so far this school year. It’s actually got worse. At least last year the teaching staff got to know him and some of teachers did try to help. We even had a couple of teachers who really got to understand him and they did try to modify the programme for him. For this school year his teaching staff and teaching assistants have all changed. So we are back to square one.

In terms of support for Aspergers the school provides no support. It has established a quiet room which kids can go to. But this is a small, cramped room which is frequently used for teacher meetings and storage. Even our gerbils would be able to design a more autism friendly space than the schools attempt. The only area the School has talked about was maybe giving our son more time to change when doing sports – but this in practice has never happened. That’s it – no other help. It’s not seen as a school problem it’s something the NHS deals with.

In terms of dyslexia school argues that it provide a Teaching Assistant in each lesson to provide support. This is not dedicated support. The TA has to try and support the whole class. Our son’s class also has a profoundly dyslexic child and the TA helps this child during any reading elements of the teaching. Again school argue that our son should put his hand up and ask for help. Unfortunately the TA is frequently already occupied. More fundamentally requiring a dyslexic child to put his or her hand up and ask for help completely misses the point. Most dyslexic kids won’t put their hand up because of the stigma still associated with not been able to read. Putting your hand up is seen as flagging up that you are different. Consequently son never puts his hand up anymore. So school argues that the lack of support is down to our son not requiring it. They can’t seem to get their head round being proactive.

Absolutely clueless

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

It’s Autumn so it must be time for home made soup. So the chef places the ingredients in the slow cooker and lets them stew for a few hours. Then it was time for the chef to blend the ingredients in the smoothie maker (it’s a multitasker). Unfortunately the chef forgot to put the lid on . So now the kitchen has gone from a magnolia paint feel to one more a kin to a Ghostbuster ectoplasmic theme.

Absolutely clueless

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

To try and calm down after my two earlier conversations I went for a run. Within minutes my running to the beat of Mongolian Heavy Metal came to a halt as the mp3 batteries died. Still it’s a pleasant day for a run. Halfway round I stopped to tie my shoelaces while a rather inquisitive cow peered over a gate. Thirty minutes later I arrived back at the house. Where’s the MP3 player? Pants I must have put it down when I tied my shoelaces. So I had to run back to that gate. Visions of a head banging cow thinking why she had never come across Mongolian music before.

Absolutely clueless

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

So whether it’s been Government Officials, Teachers, Parents, Chefs or Runners. It’s been a day for the clueless.

Posted on by bereavedandbeingasingleparent · 79 Comments

The tree of hope

Three years ago I was trying to get my head round organising my partners funeral. At the same time I was trying to empty my mums house and wrap up her loose ends. My head was completely spinning. I was in full zombie grief mode.

One family personal trauma doesn’t stop the world from spinning. It carries on regardless. So I was immediately faced with continuing the application for our sons Education Health Care Plan. Sat bewildered at my partners desk trying to find on my own the words for the final application form. The words came so easy when it was two minds. Now the one failed me. Then the black pen stopped working. Couldn’t find another and the form had to be completed in black on the pain of ……

So I set off to the shops to buy a pen. But quickly I was lost in a sea of grief and unanswered questions. An hour later I found myself at a random garden centre. Clearly a good choice for stocking up on pens. I wandered around aimlessly looking at plant after plant. The cctv must have been focusing on me as I was clearly not acting like your ordinary shopper. Then I came across a sad looking tree. Actually more like a snapped twig. The label said ‘discounted Pear Tree due to damage’. I felt sorry for this broken life form pushed to a dark corner of the store. Now no more that an afterthought. It felt like me.

So I went in looking for pens and came out with Groot (Marvel Universe).

Over the next three years Groot has grown and is now about 5 feet tall. Looks surprisingly healthy. AND this year for the first time it’s produced pears. Just FOUR pears. But it’s not the fruit crop which is important here. It’s something completely different. It’s HOPE. When personal tragedy strikes your whole world is turned upside down. It will never be the same again. You move from creating memories together to replaying memories in isolation. But you can’t live your life in those memories. Life has to go on. In my case life did go on. Yes I miss her dearly. Yes sadness always feels just round the corner. Yes I’ve become increasingly isolated from society. But life has gone on. Sons Education Health Care Plan was approved. I’ve changed careers. Progress has been made with Dyslexia. The house no longer feels like a funeral parlour largely down to the addition of a barking mad dog. I’ve increased the range of foods I can destroy. And Groot is thriving. That gives me hope.

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Homeless

Pets have really worked with our son. They provide so much fun and relaxation to him. Since he lost his mum they brought noise and life into the house again. That’s before we even consider the help they have provided with his Aspergers. Best parenting decision ever to bring them into our house. Not such a great financial decision but fiddle sticks to that.

One day we will get a sensible pet. It certainly isn’t the walking dinner plate which is our boy cat. It most certainly isn’t the mad pup currently outside trying to play hide and seek with the butterflies. The hope was that the three gerbils would bring some much needed sanity to the house. Team Gerbils maybe a super hero team ready to assemble but they are also a unrivalled demolition team.

The first house they had was plastic and lasted minutes. The second house was compacted straw and met a similar fate. We upped the anti for the third house with a construction of wood and wire. It has lasted longer however last night Team Gerbils got to work.

To be fair to them they did stack what was left of the house neatly to one side.

Dad we need to get them a new house don’t want them to get angry. You wouldn’t like them when they are angry.

So it’s wooden house version 2.

Notice that in the time it took me to get my mobile to take a photo Team Gerbils have got stuck into the roof.

If this house fails then it’s a phone call to Tony Stark and it’s time for Ironman Armour.

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Spectrum

Sometimes it’s tough watching TV and Film with its frequent ill informed stereotyping. It’s not often you see Autism depicted as routine ‘normal’ life. It’s the full on Rainman, the brilliant genius or ….

Dad how many people will think I’m a Psychopath or Sociopath when they find out I have Aspergers.

That’s another question I can’t remember seeing in the really helpful ‘A to Z of Parenting Books’.

Those very assumptions have appeared in a few movies and shows we have watched recently. Some quite indirect references and some completely full on. We love Sherlock. In the series it’s made quite clear that Holmes has Aspergers. Further Holmes frequently says ‘I’m not a psychopath I am a highly functioning sociopath”. In another movie the person with Aspergers is a loner, has no empathy and shows no remorse for his actions. Here Aspergers means you are a Psychopath.

The two are not the same.

Our son has developed a good understanding of the important differences between the two diagnoses. He is also aware that unfortunately not everyone understands this equally as well. That’s where inappropriate stereotypes in TV and film can have such a negative impact. Whatever the reason for this. Laziness, widespread misconceptions, Creative Blindspots, or a deliberate attempt to avoid reality. Autism is such a broad spectrum its time this was reflected more accurately in mainstream culture. Yes it could be the brilliant detective, but equally it could be the loving person next door, or someone who is socially awkward, or the loner, or the comic, or the gentle animal lover, or the person who is physically challenging, or the person who focuses on one topic, or the person who has intellectual disabilities or the average person who just blends in.

Just as damaging as the inappropriate stereotyping is the air brushing of reality. Autism is relatively widespread. Yet often it is invisible in modern culture. It’s as if it doesn’t happen. Depending on the research the instance of autistic diagnosis is approximately 1 in every 50 or 60 child. That doesn’t include the majority who go undiagnosed. Yet autism is grossly unrepresented in TV and Movies.

Let’s start properly promoting awareness. Let’s start to be open about it. Let’s start to see it done right more times in TV and Film. That would make such a big impact for so many of us.

Posted on by bereavedandbeingasingleparent · 64 Comments

150 miles apart

Son just looked at me with that knowing smile.

“Well played Dad”

He is accustomed to the occasional mess up. I like to think that it’s all part of his educational journey. You can learn from the best but wow you can learn from the worst….

Our son really loves rock music. One of the few public gatherings he actually looks forward to is a rock concert. He has seen Iron Maiden, Hollywood Vampires, The Darkness and The Damned. This year is promising to to be a good one with a number of concerts already booked. Bank Manager not best pleased. The bookings is today’s educational cockup learning event.

Somehow Dad has managed to book for us to see Thunder in York and on the same night Ozzy Osbourne 150 miles away. That might cause a few logistical issues.

So what to do.

Our son has not seen either acts. His Dad has seen Oswald but never Thunder. I have really wanted to see Thunder for about 25 years. Only thing to do is let our son decide.

A decision I would have agonised over for days was dealt with in seconds by the logical Aspergers mind.

“I would like to see both bands Dad. One is a legend the other is a favourite of my Dads. Both are great live. Thunder will hopefully be going for years. However Ozzy is Ozzy. It’s unbelievable that he’s lasted this long. Probably last time we will be able to see him. Let’s see Ozzy and hope we see Thunder maybe next year.”

Decision made. I can give my tickets to my brother in law.

“But Dad since we are talking Ozzy and anything can happen with him. Can we hold onto the Thunder tickets until the last minute – just in case.”