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Wembley

The Yorkshire version of Wembley Stadium. Can you spot the pet trying to once again sneak into the photo.

Even comes with a discerning crowd.

If Aspergers Parenting was a football game, well today feels like we have had a key player sent off….

I always naively assumed that if and when son got an official diagnosis then a support package would be out in place to help with his life chances. How silly of me. I didn’t count on year after year, having to fight the system. Trying to prize just the hints of support from a system which has been hammered into the ground by a Government which only looks after itself and it’s friends. To summarise

  • A school system repeatedly fails kids who do not fit into the factory production line which is the UK school system. Two options, either fight for a place in one of the few special schools or accept your child being bracketed as ‘low attainment’ and consigned to the bottom set. The school will then forget about the child and then pat itself on the back if the child gets just one certificate.
  • Letter after letter, call after call trying to find a clinician who is prepared to look at your child’s case.
  • Passed from specialist to specialist who don’t have the time or resources to add your child onto their case load.
  • Service after service cut by a Government which believes that only the rich should be able to buy access to essential healthcare. A Government that sees Mental Health as no more than an excuse to avoid work. Let’s not forget they described a child taking time off from school after a bereavement as an extended holiday.
  • When you do finally get access to a service you then join the growing waiting list. Finally when your child is seen it’s virtually always by someone new, with no understanding of the back story.
  • Finally your child starts to get older and the few services he has had access to are withdrawn as he is now above the age threshold. You see the Government likes to think that after 13, services are pointless and far too expensive. Adults have to sort themselves out.

We have had three brilliant exceptions to this.

  • A Clinical Psychologist who worked with out son consistently for three years. She even delayed her retirement to ensure son’s diagnosis was officially approved.
  • An Occupational Therapy service that worked with him every few months to help with things like coordination. A service which was cut when he reached 13.
  • A wonderful Nurse Counsellor who worked with our son for 3 years helping with his anxieties and joining the fight for additional help.

We entered June 2020 with just the Nurse Counsellor left from his entire care package. And now the player is sent off.

The Nurse phoned today to let us know that she had been reassigned. She is great and some other kids are really going to really benefit from her time. We are eternally grateful for everything she has done. She is going to desperately try to find another clinician to take over from her. I know she will really try. We may get a replacement. The Nurse was the only clinician he really has connected with. Those connections are rare for him. Making a new connection is going to be tough and most certainly not guaranteed. As the Nurse said it feels like we have lost the progress made over the last few years.

Today feels like one of those tough parenting days. As a friend wrote recently we pick ourselves up, dust ourselves down and start again. We most certainly do. But it feels like it’s a much depleted team taking on the struggle. Forgive me I’ve not used a Lord of the Rings metaphor for a while. It feels like the heavens have opened. The hordes are massed outside the walls and I’m stood alone on the Battlements of Helms Deep. Just me protecting our son now. Doesn’t feel like Gandalf is riding over the horizon in the morning. I’m going to have to just find a way of doing this myself.

I’m off now to kick the ball into the net a few times. Maybe with a bit more force than usual. Then the fight starts again.

Posted on by bereavedandbeingasingleparent · 101 Comments

Fragmented

Good to see the local motorway is busy…. It’s still too busy for our son. I got special dispensation to step 10 yards out of the front gate to take this photo. Life on the edge.

It really does feel a bit like that at present. On one hand we have what apparently counts as our Government rapidly relaxing restrictions and on the other hand kids like our son….

His social and health phobias are in a pandemic fuelled maelstrom. Every few minutes he feels the need to wash his hands. To repeatedly rinse his mouth out. The fear of germs and hidden dangers becoming a real nightmare for him. He struggles to touch items like taps and handles. Even putting potentially unclean shoes on is a challenge these days. Deliveries have to go into garage quarantine for at least 4 days. Clothes need changing every few hours. And then another spanner in the works. The old house boiler completely failed. So a service call out is required. It’s now way beyond a temporary Dad patch up. That means an additional new threat to sons safe area. A house visitor! After much discussion we agreed a plan. The service engineer would come into the house only via the back door. The engineer must wear a mask at all times. I will keep 2m away from the engineer at all times. When the work is finished we will effectively lock down half of the house. We won’t venture into the areas the engineer visited for three days. Not ideal but it’s a plan. Son’s stress levels will rise but hopefully not too far. The damage to his safe area minimised.

Yet individuals like our son are expected to just re-enter the world by July 4th. The date our part time PM is declaring as the day he defeated the virus. The date he can heroically restart England. It’s perfectly fine to open overcrowded public schools in September. A few more hand sanitisers in the corridors and relaxing the rules further to allow for even larger class sizes to cope with increased teacher sickness is now the best way to deal with a pathogen. We are told ‘everything is now fine’ by the very leaders who have been proven to be wrong on virtually every single major decision they have made over the last 6 months. The very leaders who now widely seen as charlatans and pathological liars. People see this. Our son sees this. This just adds fuel to his anxieties. It’s making a bad situation even worse.

So when England reopens on the 4th July a small bungalow in Yorkshire will not. It stays on lockdown until son is able to face the world again. Who knows how long that will take. Much patience is required. We won’t be the only family facing this prospect. Again my country further fragments. I’m not entirely sure it’s ever really going to come back together again.

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Lost Friends

And another rose photo…. I have to say out garden is blessed with weeds and roses. Each year they appear and they always feel like the return of friends.

Last night I had another weird dream. This time it took me back to my university days. It started off by showing that my career path had been influenced by a slip of a pen. I had applied to do a degree in Economics but had been put on a Home Economics course. A degree in cooking for the worlds worst chef, OK.… But the main part of the dream was centred around friendships. All my college friends were on the course but no one recognised me. As hard as I tried, nothing. I was just blanked by them. Most unsettling.

As ever the weird dream put an end to my nighttime sleep hopes. So it was time to drink tea and think. A quick search on the internet found recent pictures of some of my old college friends. I just about recognised them. Would they remember my face which is perfect for radio – probably the same I guess. But here’s the key thing. These were really close friends. Yet when was the last time we met up in person. Our careers and life’s moved us apart. I’m not sure it was even this century. But it doesn’t stop there

  • I haven’t seen my schools friends since I first left my childhood home to go to University.
  • One really close school friend I did keep in contact with. We would meet up every few months. But again our life’s drifted further apart and the last time I heard she was living in Israel. That must be over 20 years ago.
  • My climbing friends still keep in touch via letters. Yes letters – how old fashioned does that sound…But we haven’t been climbing together in 6 years.
  • I still keep in regular text contact with a good friend who I went to football matches with. But I’ve stopped going to games now due to circumstances, so we don’t meet up in person.
  • Work and parenting friendships have come and gone.
  • Friends in the village have dwindled. Some have moved away, some have sadly left this world.

So in terms of actual physical friend meet-ups it’s down to one chap I normally work with. He occasionally drags me for a game of golf. There are so many stories right there – my golf career is about as good as my cooking career. But due to the pandemic I have not seen him since the start of March.

Life and my choices have sent me down this path. Living in a rural area, bereavement, single parenting and autism in the house have all contributed. But it is was it is. A huge element of personal choice comes into the mix as well.

Yes this is sad but I am so lucky. The gaps left here have created space for blogging friendships. I’m doing the best job in the world – parenting. Job is the wrong word, it’s more a privilege. I have a great life. But I do so worry for others. Feeling alone can be such a dark place. Alone and yet claustrophobic. No one to reach out to. No one to interact or grow with. Some choose that option freely. But many are forced into it by circumstance. Illness, age, special needs parenting, single parenting, location, social factors, fears and yes a pandemic. It’s so easy and unfortunately very convenient to forget about those who drop off the grid. Last night was a timely reminder for me.

Take care my friends.

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Needs work

Another moody Yorkshire summer afternoon. Everyday it’s such a blessing to wake to this view. No wonder my partner fell in love with this house within seconds. And as ever she was on the right side of the conversation. The ‘needs work’ line was a little weak. Actually it still needs work but that view is still here. Tell me what’s more important.

Looking back my line about ‘needs work’ was more about avoiding change. Sticking with what we had. Avoiding that leap of faith. That’s been a theme of my life story so far. I always think my past climbing hobby is a perfect reflection of life. Many goals set but never attempted. It was easier to avoid them, find excuses. Too much caution climbing routes. Using fear and self doubt as an excuse to avoid those more challenging climbs. Backing away from leaps of faith. Yes I had fun but what could have been.

Now the life safety net has been removed. Single parenting and being without that person who held my hand on those big steps. Life has changed but so am I. It’s a slow process but it’s happening. Now is the time to face some of those fears which have held me back. Time to start ditching those constraints that have grounded me. Time to re-evaluate myself. Only by doing that can I be that parent our son truly deserves. Yes the one who protects him but the one who also encourages him to truly flourish. To be that person who he truly wants to be. To live his life.

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Rain…

Rain, rain, rain.

Chucking it down.

Raining cats and dogs.

Hammering it down.

Siling down.

Bucketing down.

Teeming.

Nice weather for ducks.

I think we are moving from weather for ducks to weather for fish. It’s a good job we are on top of a little hill. Any lower down and we might be considering a life raft.

“Dad what are you doing?”

Listening to the rain.

“Why?”

Because it’s almost hypnotic. It’s kinda nice.

“The only reason I would listen to the rain is to workout when it’s stopped…. Dad I‘ve got a little question….”

He does have a point with listening to the rain. That last line is his favourite saying. He is always asking questions. Dozens and dozens every hour. When he says a little question he really means one question followed quickly by a bombardment of another 30 questions. Random questions to me but completely linked to his way of thinking. Often it seems like the same question but in fact each question is subtly different. Questions followed by a chance to demonstrate his Dads rather sketchy knowledge in these areas. Then a chance for son to instruct his Dad. This happens always in the garden, every day. If it’s raining then on go the coats.

Today it was three hours of football and fantasy world related questions. Looking at player stats, team records, form, tactics and formations. Intertwined with questions about characters, storylines, plot arcs and new worlds. Yesterday it was 4 hours of questions about politics and history.

Over time the daily fact and knowledge bombardment can tire my mind. Lack of sleep doesn’t help. Two parents allowed some time to share the questioning. A time to rest the mind. But it is what it is. Constantly walking about and hot drinks keep me going. But here’s the key thing to remember. It’s an absolute privilege to be granted this time with our son. To be welcomed into his world. A beautiful world which is more pure than ours. It’s what life is all about. So yes it can sometimes feel like it’s wearing me down BUT I wouldn’t swap it for the world.

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Not my berries

Wild strawberries get everywhere. Now they have found a way into the large tub which contains the old blueberry bush. This raises one of the great life mysteries. Wild strawberries are cropping up all over the garden. Even on the stone drive. Yet I find it impossible to grow them when and where I want them to. Nothing ever happens with my strawberry seeds. Most frustrating….

So officially no work until September at the earliest now. I guess it gives me more time to tend my strawberries. But we are SO fortunate compared to many others. We have beautiful memories. We have a nice (if slightly chaotic) garden with a lovely view. We are relatively secluded. Son can feel safe here. We can scrape by and pay the bills. We can still have fun and enjoy life. Yes another 3 months of this self contained world can at times seem a claustrophobic thought. But that thought is there only if I let it exist. In reality I’m losing a few brief encounters, some knee jarring runs and an occasional trip out. Counter to that – Son is gaining a feeling of security. For that security I can more than cope with a few inconveniences. Everyday we still have the ability to create memories and live out our dreams. Maybe not my frequent night dreams featuring talking cows and dinosaurs. But you know what I mean.

So let’s be thankful for what we have. Let’s use what we have. Let’s remember to live.

Let’s take the time to watch the wild berries grow…

The other thing about the wild strawberries is that they don’t last long. The are stripped bare by our frequent garden visitors. That’s fine with me. I guess they were the ones who brought the seeds here in the first place. So they grew them, so why not let them enjoy the rewards. And the answer to the great life mystery. I should leave the gardening to the experts. The wildlife. Having said that – they don’t seem very willing to cut the lawn.

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Useful Book

Yes we can do blue skies…..

It didn’t last long but it was most gratefully received.

Trying to facilitate son’s return to the big bad world is not going to be easy. It’s going to take a long time and much patience. It has to be done at a pace which he is comfortable with. That’s the plan but then the real world comes a knocking.

His fears of bugs and illnesses have gone into overdrive in 2020. Can’t think why! We have established routines for accepting deliveries and post. Any trip through the front door requires what feels like full biological decontamination protocols. It’s not really about blocking out a virus, it’s about managing anxiety.

Over the last three months we have managed two very short circular car drives. But now we face our first real test. A phone call from my garage telling me that finally an essential car part has made its way from China. So it’s time to get the car’s breaking system fixed. So on Monday I have to drive 20 miles, drop off the car and pick up a garage pool car. Then later in the day return to the garage and pick up a fixed car. Normally this process would be done seamlessly. Now it’s a logistical and anxiety nightmare.

Does son stay at home while I go to the garage? On my return I can undertake full biological decontamination. Son struggles with being alone. He will be stressed out with being by himself for a couple of hours. He will be super stressed out with my exposure to the real world.

Or does he comes with me? Yes that avoids the stress of being alone BUT…. Suddenly son would be exposed to the real world. And lots of it. A garage filled with strangers. A pool car which will have had other people sat in the seats. Touching the surfaces. Another stress inducing nightmare for him….

So currently I don’t know what will happen on Monday. I’m getting stressed out trying to run through all the possible logistical permutations. But that pales into insignificance to the bucket loads of stress which will be hitting our son. Again I can’t find a helpful section on this in the How To Be Parent Book. One day someone is going to make a bucket load of money writing this. Well if they could get it published within the next few days you can count on one sale from me…..

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An old trip out

This is from a couple of years back. A two hour car drive to the west side of Northern England. The Lake District. A place that sometimes feels just a little bit Alpine.

We stopped off at Castlerigg Stone Circle. One of the countries finest historic sites set amongst the countries highest mountains. It’s was erected in the Neolithic period. Sometime around 3000BC. Yes even before I was born. It’s one of those special places. Yes it’s popular picnic site now but it still has an atmosphere. It just feels different. Many years ago after a days climbing, I spent the night here. Just sat on the ground in the middle of the circle. I’m not sure why. Maybe waiting for a ghost or something. Didn’t see anything but when I walked away after sunrise, I had never felt so calm and relaxed. It’s that type of place. I could so imagine a great fantasy author coming here for inspiration.

What struck me about the second photo is the look on my two faithful companions. New visitors had just arrived at the site. The four legged one, I suspect was eagerly checking them out for food or toys. The young boy was definitely not so eager. Once the site started to fill up a little then it was most definitely time to go. Crowds and Aspergers are not great bedfellows. That’s why the time to visit places is such a delicate scheduling task. The choices tend to be

  • Go when the weather is bad,
  • Go just before they are closing,
  • Arrive super early. Try to get round before the masses start to arrive.

As a result visits tend to be fleeting. They also sometimes require really early starts. In this case we set off at 5am. That’s not ideal but needs must. One definite advantage. Nothing better as you drive away from a site and passing the traffic queues waiting to get in. Does that thought make me a bad person….

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Movies

We are running out of sun cream this summer….. So need protecting from the unbroken sun beating down on parched Yorkshire……

Over time you find ways to protect your inner self and your family. Unlike sun protection, these things are needed frequently here. With Son’s Aspergers he can suffer with severe anxiety attacks. To be fair I struggle as well. But over time you find ways to block out the anxieties for a little while. For me the best blocking techniques are running, exercise, music and climbing. With Son it’s dreaming, talking and watching wrestling. One thing that works for BOTH of us is watching movies.

I remember being told by various parents that I should limit screen and TV time. It’s bad for all kids. Apparently it’s ok for the same parents to watch as much TV as they like. Ok. We need to remember that all kids are different. Unique personalities. What works for one child may not be suitable for another. In the case of our Son, movies help brake the downward descent into an awful anxiety whirlpool. So when he needs to, he can watch a movie. If it takes two movies, then it’s back to back cinematic viewings. I guess the ultimate would be to watch the entire Marvel Universe in one sitting…..

The other upside to movies is that it helps with my anxieties as well. It’s good sometimes to forget the current world and just escape. Son tends to be in full control of the movie schedule. His choices will work for me. Often these are cartoons. That suits me just fine as I’m a big kid at heart. Nothing better than 90 minutes of ScoobyDoo or Ice Age. Part of me secretly would love to be deposited in one of those cartoon worlds. They always feel so much safer and more fun than ours.

Well the other night we both needed a bit of cheering up. So we sat in front of the TV and Son scanned the available options. Which Scooby movie would he pick. He might even pick a Marvel epic. This is going to be so cool…. Five minutes later we were watching the Playmobil movie.

Now that was not what I was expecting. Son hasn’t played with a Playmobil toy since he was about 4. Ok I will just grin and bare it. Well I will go to the bottom of our garden. WE both loved it. So much so that when I couldn’t sleep during the night, I watched it again. Ok that’s my rock and roll credentials blown out of the water but so be it. Yes its not going to get any Oscars but it certainly wins on the anxiety blocking scale. Now am I too old to get out the Playmobil figures……

Unbelievably while writing this ….the sun has come out. Where is the sun cream.

Posted on by bereavedandbeingasingleparent · 71 Comments

School at home week something

Still summer…

It’s the end of another school at home week. These weeks are just merging into each other now.

School at home has gone pretty well over those whatever weeks. Son has adjusted well to it. He’s been pretty relaxed but we have a cloud on the horizon. Next week the school is starting to bring in virtual classrooms and live teaching via Microsoft Teams. Son hates the thought of being videoed. He really struggles with it. Plus with the other kids present he will retreat into his shell again. So this new teaching development has filled him with dread. The technology will work. Will it work for all kids. Will it work for those kids with special educational needs. That’s a bridge to cross next week.

The other thing which has stood out is observing the impact a slight change in school routine can have on our son. And it’s not just the virtual classroom idea. Sudden and unscheduled changes in teaching style, teacher, timetables…. All these have a major impact on him. He becomes deeply unsettled and stressed out. This really compromises his performance. I’m not 100% certain schools are aware of the impact these things have on kids on the spectrum.

But back to this week. What has this slightly bewildered parent learnt.

  • Son can walk, eat, drink and use his iPad at the same time with ease. I struggle to walk without crashing into walls.
  • Two words have the immediate effect of sending me into the kitchen to eat junk food and find coffee. French and Drama….
  • How many lessons does a kid need just going on about how to make puff pastry. Surely Food Technology can find another food to look at.
  • Apparently the term for you arm hairs standing on end is Piloerection…
  • When I get the feeling that I am right and the science teacher is wrong on magnetic fields, it’s probably best to fact check my knowledge first……
  • Occasionally giving a kid a little constructive feedback on work might be a good idea. Most teachers do. Unfortunately some teachers give nothing back. That’s something like 13 weeks with nothing. Really…
  • Practicing tennis in the garden is difficult when you can’t find any tennis balls.
  • Practicing tennis in the garden is difficult without balls and it’s chucking it down.
  • Practicing tennis in the garden is difficult without balls, in the rain when you can’t find the tennis racquets.
  • Online French classes seem to drain the iPad battery much quicker than any other subject. This is bizarre as French vocabulary seems to have exactly the same effect on me.
  • It’s rather emasculating when your Son decides to film his own art cartoon project. The words maybe getting the cartoon in focus might be a good idea do sting….
  • When your son has Dyspraxia and Dad has basically got the artistic talent of a Brussels Sprout – trying to free draw a pie chart on the iPad is basically a waste of time.
  • iPad voice recognition works with hundreds of languages but can’t handle anyone speaking with a Yorkshire Twang. For example how difficult can it be for a machine to understand someone saying ‘Royalty’. As hard as Son tried the iPad kept hearing Roll over and when I tried it heard Reality. Remind me not to try it with a word like luck.
  • I can’t remember how to programme the microwave or where I left the TV remote control but somehow I can remember school calculus. How is that possible.
  • The school has done a great job in getting the school at home IT working. But it hasn’t cut down the paper usage. Since the project started in April we have used up a full ream of paper….

So another week down. I get the feeling next week will see the return of the really sarcastic parent….