“Dad if the bus was like a Swiss Train then I might be happier about getting it everyday”
My son if it was like a Swiss Train and served the same chocolate I would live on the bus. To someone who has been brought up on the infamous UK train network the concept of clean, comfortable and sometimes opulent carriages is rather alien. That’s before we even think about precision punctuality and a nice food service.
I remember waiting for a train in Switzerland one morning when the station announcer informed us that an avalanche had blocked the track (the announcement was in 4 different languages). In the U.K. that would mean the track would be shut for about 9 months. Or if our Prime Minister is sorting it out maybe never. A few minutes later the station master started speaking to all the people waiting on the platform. In perfect English he informed me that the specialist team was on site and he genuinely seemed horrified that the train would be late. After a couple of minutes it was announced that the avalanche had been cleared and they were deeply sorry that the train would be 10 minutes late. Ten Minutes……
Son survived today’s bus trip but it wasn’t a bundle of laughs. Although he did appreciate Dads attempt at a slushy drink when he came home. The dog enjoyed chasing the ice around the kitchen when someone forgot to put a lid on the blender. Silly dad.
When budgets are tight it is difficult for councils to run a school bus service. We actually should be thankful that we have one. But the school bus run is often so difficult for many kids, especially those spectrum kids. I’m not sure I like that phrase for some reason, may not use that again.
So many factors contribute to the difficult school journey:
- Different drivers everyday. Our son would really appreciate just one familiar face and it spooks him when a new driver appears,
- Frequently dirty bus interiors. Let’s be polite and say they tend to be not that clean. Again to someone who hates touching potentially dirty surfaces this is not conducive to a relaxing trip,
- Poor behaviour. I think the term bear pit comes to mind. To someone who finds social settings challenging this type of behaviour is really distressing,
- Different sized buses used daily. Because of his Aspergers he likes routine. Not knowing what type of bus will turn up can and does disorientate him. It is a big issue if the bus randomly changes from minibus, to medium size bus, to large super coach,
- Because the bus size changes and the large number of kids using the bus, seating position is random. On an ideal day he can have a window seat by himself just behind the driver. However when smaller buses turn up, seating is restricted so he is often forced to sit next to someone who he probably does not know. This is an absolute nightmare for an Aspergers kid.
- The buses have such a tight timetable. On arriving at school the kids only have a few minutes to get to the first class. If you are late you get an automatic negative. After the final lesson the kids only have 10 minutes to get on the bus before it leaves. Added to this it is a big school site and also due to its age it’s a bit of a maze. That’s a lot to cope with especially for someone who can go into meltdown when he needs to rush and who struggles with the concept of time. He also takes a lot longer to pack his bags and put things like coats on. It’s a recipe for anxiety and stress.
I haven’t got an answer. I have contacted the school and council. Our Health Service has repeatedly raised similar concerns in connection with many of its patients. Nothing changes. My last offer was that I would be more than happy to volunteer to work with the authorities in designing the next tender process for school services. I suspect I know the two word answer to that, something like **** off. In an ideal world we could get the Swiss Public Transport experts to run the school bus. That would be problem solved and wow the chocolate…..
Parenting is a great but frustrating gig. You think you have cracked it and then it bites you on the bottom. As annoyed as I was this morning it is now out of my system. So many kind words eased the pain….I can’t thank you guys enough.
Anxiety and frustration builds. It makes you tired and makes you do strange things. I always look at it like a house. Everything is fine and then something goes wrong. A pipe bursts. The house starts to fill with water. The pressure builds. The first thing you need to do is release the water pressure. Find a window or door to open. Once the pressure is released then you can fix the pipe. Everyone has to find their own window to open. It will be different for each person.
In my case I did have a rather foolish window. When the frustration built I would go outside and literally find a wall to punch. Not good. Going back to my house analogy. I am no Captain America or Hulk. As hard as I punch the wall I’m not going to break through and release the water.
But a few months ago I found a new window to open. This one seems to work and is also scalable. When the frustration builds I go outside to our wheelbarrow. Fill it with all the stones, bricks and sandbags I can find. Then I push it round the garden. It’s hard work on the grass and slight slope. For minor frustrations I do one circuit of the garden. The greater the frustration the more circuits I do. Todays was a 10 circuit frustration. I call it my Wheelbarrow Train of Pain. It does relieve my frustrations and is quite good fitness training. The dog frequently adds his own dynamic to the circuit.
Our son just laughs at the Wheelbarrow Train of Pain. He is trying to convince me to modify it. His idea is rather than increase the number of circuits I should do just one circuit but reduce the amount of clothes I wear according to the frustration level. As a result a defcon 4 frustration would see a very cold and naked man pushing his wheelbarrow. Thats not a pleasant thought. Not at all.
This is the Hospitium a 14th century listed building in York’s Museum Gardens. These days it’s a venue for conferences, weddings and special events. Many years ago it was a support building for the Abbey.
St Mary’s Abbey was founded in 1088. The surviving ruins date back from about 1270. York is such a good place for kids to actually touch history.
Over Christmas our son spent a few hours here trying to imagine what life was like before it fell into ruin. Recreating the sounds, the people, the buildings, the life. Big scale creative play. I must admit I was lost in the world of dreams to. Mine was a world of ghosts, ghouls and vampires. I had almost forgotten how much fun you can have when you release your imagination.
This was the visit when the first seeds of home schooling started to be scattered. Last term had been grisly. No real sign of development. No evidence of school making any effort to provide an effective and supportive teaching environment. Most importantly a really unhappy and anxious child.
Our son loves subjects like history but not the way school deliver it. He likes the History Teacher, she is really nice. But being in the bottom set and given his encyclopaedic knowledge – he’s not learning anything. Plus regardless of which class you are in the teaching is so traditional. Text book after text book. Very dry and not very dyslexic friendly. Unfortunately it’s the set teaching approach dictated by the government.
Between my thoughts of ghosts and ghouls I also pondered with so much real life history so close to hand, why not bring the classroom here. Bring the lessons alive. That’s when the thought pinged, if school won’t teach here, why don’t I.
We will see.
The trip was completed with the required extra portions of ice cream. That night my imagination had clearly not been put back in its box yet. A dream about Dracula. But not the bloodthirsty vampire. This one was about a reformed Prince of Darkness. He had sold his Transylvanian castle and bought York’s Museum Gardens. He wanted to turn the gardens into the finest history school in the world. All the teachers were ghosts and ghouls. And Dracula was selling the ice creams and he didn’t skimp on the portions. Now that’s a school.
Thankfully we made it to the end of the week. Some random animal photos helped. But it’s the weekend and at least for a few hours our son is in a happy place. While he is happy then I am happy.
A few weeks ago we talked about his second favourite animal in the world. Let’s meet his favourite now.
The Peregrine Falcon.
Since an early age he has just loved the Peregrine. Luckily he has had the opportunity on a couple of occasions to handle this just stunning bird of prey. In the U.K. one of our main nature presenters is Chris Packham. He has Aspergers and is brilliant. A tireless campaigner for good. Chris has openly talked about his life with Aspergers. As a child he developed a special bond with a Kestrel. His fascination and bond with the Kestrel mirrors that of our son with the Peregrine.
I now hand over to our son for fact time (his words now)
- The Peregrine is the fastest animal on the planet. Likely to be the fastest creature ever to live on earth. Potentially the fastest creature in the Universe. In its dive (the stoop) it can reach over 215mph
- They have special baffles in the nose to stop them blacking out during dives
- Sometimes called Duck Hawks
- Favourite diet is pigeons, starlings, doves,
- It’s nest site is called an eyrie
- Wingspan is 3ft
- It flies high, uses its super eyesight to see prey below. folds its wings like a jet fighter and nose dives towards its prey. It will then strike its prey with great force.
- They can be kleptoparasites. Steal pray off other birds.
- Lifespan up to 15 years
- They have larger eyes than humans and can see prey over 300m away
It only takes us 30 minutes to drive into our closest city, the beautiful York. We are so fortunate to live so close to such an historic city. Such a rich pedigree.
- It was founded by the Romans in 71AD,
- The Emperor Septimus Severus ruled the entire Roman Empire from York for 2 years,
- Constantine The Great was proclaimed Roman Emperor in York,
- York was captured by the Vikings and named Jorvik,
- Guy Fawkes (remember remember the fifth of November) was born in York,
- York Minster is one of the worlds largest Cathedrals and took 250 years to build. It is the largest Gothic Cathedral in Northern Europe,
- The Shambles is the best preserved ancient retail street in Europe dating back before 1086,
- Dick Turpin the famous Highwayman was executed in York,
- It has 3 miles of ancient City Walls still intact,
- It is regarded as one of the worlds most haunted cities with over 500 recorded ghosts,
- It has the worlds largest Railway Museum,
- While other Northern British Cities built their wealth on coal, steel and textiles – York made it on Chocolate and Sweets. Rowntree’s and Terrys.
That was supposed to be the end of the post. Trust me York is worth a visit. Basically it’s a really cool City. Especially for a young kid with aspergers whose thirst for facts just keeps growing. He just laps up the facts. When I started writing this post I asked our son to supply me with the information. I completely trust his memory and haven’t bothered to double check the facts.
So it’s so upsetting when he came out with the following Statement a couple of hours later:
“I don’t want to be stupid, I would love to be clever one day”
So off we went for another late night dog walk. I try to provide reassurance. Try to build up his confidence and restore his faith in his dreams. But it often feels like a short term fix. Applying a temporary bandage to the wound. A bandage only protects the wound it doesn’t treat it. As Extreme would sing – I need to find more than words. I need to raise my game…..
I was blog chatting (or whatever it is called these days) with a friend today and somehow politics came up. When I say politics I mean really silly politics. Our politics is grim. Very grim. One of the only fun elements is when one of our smallest parties enters the elections. The Monster Raving Looney Party. It’s almost as if Monty Python had entered politics. It was started in the 1960s by the musician called Screaming Lord Sutch.
This was the Party who had a real cat called Catmando as its joint leader for 3 years.
Some of its brilliant policy ideas have included:
- Make the tax system more complicated so that it is harder for companies to find loopholes
- Make it illegal to walk under ladders
- To prevent global warming all buildings will have air conditioning units on the outside
- All politicians should paint themselves permanently from head to toe in the colour of their party
- All socks to be sold in packs of 3 in case you lose one
- Introduce a 99p coin
- To save money they would only operate our nuclear missiles at weekends
- Build a really big wall (or hang on that’s not one of the Looney Parties policies).
The scary thing is that actually some of the ‘crazy’ policies they came up with have over years actually become rather sensible and have been adopted by the government. We have pet passports now and who was the first party to propose them. They jokingly proposed 24 hour licensing for places selling alcohol (had been very restrictive hours) and a few years later it became law. Back in the 1960s they campaigned to have the voting age reduced to 18 (now the law and how was this ever considered a mad idea).
Sadly they never quite get into government. Maybe because the looney vote is split. At the last election you had the Looney Party, plus you had a chap called Lord Buckethead, some guy dressed as a fish finger and some chap dressed as Elmo.
Some would argue that recent governments have been infiltrated by loonies.
What am I wittering on about. I don’t really know. I think the point is that when the world seems really bleak and sad. When you want to just stand outside, look at the heavens and scream. To hear your own tears raining down on this increasingly alien land. Just sometimes the only thing that keeps you going is a bit of silliness. It brought me back from the edge. Our dip into politics today certainly made our son laugh. It made him forget about his worries for a few minutes.
If the Looney Party has indeed a track record of starting sensible policies off then maybe they should come up with a policy of banishing sadness and anxiety. Maybe in a few years it becomes reality. I could vote for that.
It’s the morning after last nights anxiety vortex and the calming late night dog walk. Our son slept reasonably well, the dog extremely well. Me – not so good. Head is still spinning about trying to solve the educational conundrum. How to give our son the best opportunity to find his wings and so importantly take his anxiety away.
My thoughts keep coming back to home schooling but ….. So many factors
- Does this just increase the isolation
- How to unlock the potential
- Keeping open University options
- Type of education
- Support services
- The bureaucracy
- What happens if something happens to me
- On and on and on
This morning another option popped into my small brain. I remember a few years back watching a programme about a family living in a remote part of Iceland. May have been on a little Island as I think they were hoping to one day have a Bridge or tunnel built to connect them to the mainland. Post and supplies coming in each day by small boat. Many of the community coming out to welcome the boat as it pulls in each day.
The family had kids about the same age as our son. No schools for miles. They attended a virtual school. Rather than the school bus (or in this case school boat) they logged into a computer. Lessons then took place online with a teacher and a virtual classroom. Webcams allowed the teacher to see all the kids and importantly allowed the kids to see and interact with the other kids. It looked fantastic. Unfortunately our Icelandic is a little patchy!!!! But maybe this exists wider and might be another option to look at. Head starting to spin again so it’s time for another long dog walk. Thank you for reading these confused words. Take care. Góðan daginn
Maybe I might buy a Learn Icelandic book just in case.
New Years Day brought the traditional trip to the Yorkshire Wildlife Park. It was a wonderful few hours – more of that in the next post.
On our return things seemed fine. Then steadily things started to deteriorate and eventually we had a full on anxiety vortex. Consuming so much energy and hope.
Our son started to think again about school. Like me he often tries to overthink problems. Visualise potential outcomes. And in a similar way to Dr Strange when asked by Ironman about the millions of potential scenarios to stop Thanos – “he could only find one option which had a chance of success”. In our Son’s analysis he could only see one option with a chance of success – leaving school as a solution to his anxieties.
- Teachers who don’t understand him
- Falling further behind in reading – he realises that although he is making progress this is not catch up progress rather this is at best slowing the widening gap
- Low school expectations
- Little help
- Sensory overload at school – too much noise, too many people
- Too much homework
- Constant fear of getting negative comments and falling foul of the penalty system. Even something like forgetting to button up your top button or forgetting to bring in your planner producing automatic penalties.
- A school timetable which brings tight deadlines and logistics pressures to someone with Aspergers.
- In a disruptive class
- And on and on …..
Again today I couldn’t find the healing words. Just couldn’t stem the raging anxiety vortex. The vortex doesn’t just suck our son’s energy it feeds on mine to. Increasingly tired. Feeling broken. Mind keeps crashing back to those 6 weeks when I lost my mum and then my partner.
We try to get some sleep but the vortex continues to rage and our son is beyond sleep.
“Dad we need to do something, anything”.
Come on let’s take the dog for a walk.
“But I’m in my pyjamas and it’s nighttime”
Get changed quickly then.
Ten minutes later at 10.50pm we are walking the dog in the pitch black with one cheap torch to guide us.
The dark, the quiet, the spookiness – whatever the reason but suddenly the anxiety vortex is calmed.
Talk is now about the things we really wanted but never got as a kid. The things we love and hate about England. Favourite foods. Ghost stories.
Hopefully for one night our son is ok. He is asleep and hopefully has a good night. We dust ourselves down and go again tomorrow.
I often feel out of my depth as a parent. Somedays I feel really out of my depth. Today was such a day.
“Dad I struggle to believe in God somedays. Does this make me a band person. I don’t want to go to hell”
I tried to find the words. I told him how pure and good he was. I bumbled on about it being normal to have these thoughts. How it didn’t matter what I think or what anybody else thinks – it’s his choice. About how it’s up to everyone to make their own mind up. How he has so many years left to think things through. But it wasn’t good. It was a mess. My partner who was a Quaker would have known what to say. How to reassure. In my current tired state I can hardly string a couple of sentences together. I was really struggling.
I don’t know how many times the pets have come to my parenting rescue.
“Dad come and look at our cute girl”
This was the moment the girl cat decided that she wanted her tummy tickling. Suddenly theological questions are put to one side as the cat takes centre stage. This has bought me some much needed thinking time.
We had the big reveal. If we won the lottery which of the following activities would be our favourite and which would be our least favourite thing to do.
- Live in the Amazon jungle for a month
- Climb Everest
- Go into space
- Sail to the bottom of the sea
- Drive around a racetrack in a F1 car.
Me: Too many spiders and snakes in the jungle for my liking – so this would be the least likely option I would choose. For me it would have to be Space or Everest. I think the chance to see our beautiful planet from space would just swing it for me.
Son: Least favourite was the F1 car. Surprisingly he didn’t opt for the jungle because he didn’t want to see the damage we are doing to it. He opted for the trip to the bottom of the ocean.
The jungle cost me so I got to play jelly bean roulette. I can report back that ‘rotten milk’ flavour is not good, not good at all.
Today’s challenge: On Christmas Eve we were watching a TV show talking about Home Alone. It started to talk about a couple of big plot mistakes in the film. But before they could tell us what they are we had a power cut. So the challenge is to watch Home Alone again and see who can be the first to spot a plot mistake. Again the loser has to play Jelly Bean roulette.
We have had a decent anxiety free run really helped by the enforced absence from school. But the settled spell started to break down last night. The first indication was during watching the Jim Carrey Grinch movie. Clearly our son was becoming increasingly unsettled by the film (has seen it before and enjoyed it). To the point it was abandoned before halfway.
A few minutes later son was being sucked into the dreaded anxiety vortex.
Again it was concerns over school. Less than 2 weeks before he had to return to that dreaded place. Poor support. Too much homework. New Exams. Does he have to re-revise for the exams he missed. Doesn’t want other kids to poke fun at his dyslexia. Too many weeks until the next school holiday…..
To the backdrop of a repeated pig oinking noise as the dog happily played with his new toy we tried to talk things through. At 11pm we agreed to abandon trying to find a solution. Let’s just try and kick this into the long grass for the next week. Try to enjoy the time off. So we started a little game. The game is to try and guess the other persons answer to a multi choice question. The loser has to play bad tasting jelly bean roulette (a silly Christmas present).
If we won the lottery which of the following would you want to do first and which would you least want to do.
- Live in the Amazon jungle for a month
- Climb Everest
- Go into space
- Sail to the bottom of the sea
- Drive around a racetrack in a F1 car.
We have until lunchtime to come up with our own preferences and guess the others answers. Which do you think our son would go for? Will report back.
But at least it has stopped the anxiety vortex turning into a full on storm for a few hours anyway. Or maybe it’s difficult to have a complete meltdown to the background sound of a pig getting repeatedly chewed.