Searching in the dark

Just after my partner died I remember reading a book which suggested that grief was like a black hole. All consuming yet over time it’s energy shrinks and eventually it disappears allowing new life to replace it. I’m still waiting….

Everybody is different. Everybody deals with grief differently. This approach worked for the author but not for me.

Maybe another way to look at it could be that life exists outside the black hole. The black hole is always there. Somedays it’s powerful and sucks so much life force out of your universe. Other days not so strong. But the key thing is that although it never disappears a new life exists outside it – it’s your choice, your journey that determines how far you move from it. – that’s a bit of my inner Carl Sagan coming out in me.

My current take is a little different. It’s a dark place with doors – maybe it’s inside the black hole. My thinking is that when Bereavement occurs doors begin to shut (many permanently) on my old world. My old world will always be there I just can’t go back to it. It’s up to me to decide if I want to continue to stand next to these closed doors. As well as doors I will also discover windows into my old world. Those windows are too small for me to re-enter my old world but they do allow memories to enrich my soul. In the darkness other doors are created. They lead to new worlds, new experiences. On my grief journey I will come across these new doors. It’s my choice whether I decide to open the new door opportunities or not. Maybe I will make a few drinks, pull up a chair and take my time.

I carry my family’s trait of not having any sense of direction. What could possibly go wrong with me stumbling about in the dark trying to find some random doors…..

Silence….

5 Days 14 Hours xx Seconds

No my blog has not been sponsored by Jack Bauer and the 24 TV Production Team. It’s the time I’ve gone without speaking to anyone (excluding our son). I’m not sure if I should be proud or a tad worried. Maybe both.

So almost a week without a phone call, chance meeting or random conversation. Even on two long runs – didn’t bump into a single person. Its one of the prices you pay for living in a small village.

It’s an odd feeling. Have I been secretly ostracised. Has my liking for Nickelback finally caught up with me…….

I had assumed my streak would have ended today as today was the food shopping trip. However I managed to get round the aisles without uttering a word. I did smile a few times at random folk. Surely a conversation will be struck with the assistant on the cash till. But no. All the tills were full so I opted for the self service lane. No scanning problems encountered so the streak continued.

Tomorrow I have to go to the work unit but that is in a largely deserted industrial estate and I will be the only person in our building. So the streak may continue into Thursday. Hang on a minute Thursday is Valentines Day. Wow am I going to be seriously cranky by the 14th…

Anyway we have started a little wager, who will break my streak. I’ve gone for a random cold caller with my first words being “will you just bugger off”. Son is going for the postman or randomly a lost Donald Trump.

I will keep you posted…..

Put in my place

The directness and purity of autistic children is a blessing. It certainly puts you in your place….

I told a really bad joke and got no reaction. So I told it again but this time started to explain it.

“Dad just stop. You don’t need to repeat it. The greatest artists and musicians never copied their masterpieces, they moved on to new ideas. Never repeated themselves.”

After a few seconds of silence

“Dad in no way am I saying you are a great artist or musician. The phrase can apply to others as well”

Made up

Today I was thinking about how nice it would be to have some colour in the garden again. I tried to picture some flowers. The flowers I could see in my mind were last years plants. Couldn’t imagine any new flowers.

Our son’s school does ask the kids to do an awful lot of homework. Too much really. One of his assignments was to start putting together his autobiography. Red flag alert. This is a recipe to just reopen old wounds. Son was equally apprehensive. So I contacted school and expressed my concerns. We agreed that rather his own biography he would come up with a fictional one. As his hand is still not fixed I was going to scribe his thoughts.

“Ok I am in my 70s”

“I was born in the South of England”

Good start.

I like music”

“My best friend is called Keith and he also likes music”

“I have another friend called David who I often share clothes with”

Not sure where this is going.

“I joined a band with my friend Keith”

“We played our first concert in 1962”

This sounds a bit like Mick Jagger.

“Well it is Jagger”

No you can’t use him, it’s supposed to be made up.

“Oh, Ok.”

“I am middle aged and I am a lecturer”

This sounds more like it.

“My father is very religious”

“I am an archaeologist”

“I’m scared of snakes and I am also an adventurer”

By any chance does he go looking for the Holy Grail.

“Yes, how did you know?”

Because its Indiana Jones. You can’t use him.

“Why he’s made up”

You just can’t use him, make one up about a child not a famous adventurer.

“Alright can I be an 8 year old boy”

Yes much better

“I am a bit cheeky”

“I live with a large family with many kids. I have a really annoying older brother and uncle”

“I am always getting shouted at”

This will make an excellent biography.

“Every Christmas my family go on holiday but they always forget me, so I am home alone”

Deep sigh…. Fine you win, you can be Kevin….

What works

Anxiety, sadness and fear. Three words which unfortunately are too often near the top of our household vocabulary. Along with fart, burnt food, turn the music UP, where’s the remote, sorry I forgot and Dad you Muppet.So what have we found that actually works for both of us. Here are some of the winners.

5,4,3,2,1

We have found that this technique is really good at taking the edge off panic attacks. It doesn’t work on any underlying problems but buys some time. At the first sign of increased anxiety:

Think of 5 things you can currently see,

Think of 4 things you can currently hear,

Think of 3 things you can currently touch,

Think of 2 things you can currently smell,

Now do 1 large breath.

The Sweetie Jar Oracle

If our son is going through a period viewing the world through unhappy filters we start the Sweetie Jar Oracle. Find a large clear jar and a bag of brightly coloured sweets. Not sure about the rest of the world but in the U.K. smarties, fruit pastilles or Skittles work well. Sort out say the red and yellow sweets. Then identify one of the colours as good and the other as bad. Then over a period of a few days, maybe a week start to fill the jar with the appropriate coloured sweet every time a good or bad thing happens. After a few days hopefully you will see more good sweets than bad sweets. This usually convinces our son that although bad things do happen, good stuff happens more frequently. You can then eat the sweets….

Good Memories Store

We have an old small suitcase which we use to store good memories in. It’s full of old photos and handwritten notes. Every time we remember a good memory I write it down and put in in the suitcase. When times are bad we can then dig out the memory store and hopefully receive an instant boost to the soul. Has the added advantage of making sure you don’t forget those all important wonderful moments in time.

YouTube

Just losing himself in a YouTube documentary works somedays. I remember one occasion when he had an awful day at school but after 45 minutes of YouTube watching he was a happy little bunny. Worryingly he had found solace in documentaries about Caligula. What happened to Peppa Pig…

Wheelbarrow Train of Pain

Talked about this in a previous post. It stops my sudden urge to punch the wall with frustration. Basically load up a wheelbarrow with heavy stuff then push it round the garden. The number of circuits depends on the severity of the frustration.

Lego

Found that building a Lego set really helps take our son’s mind off his anxieties. It’s also good for his fine motor skills. It’s often frustrating for me as it just reminds me that I never got round to buying the Star Wars Death Star Lego set. Now it would be cheaper to buy a real Ghostbusters Proton Pack and get Bill Murray to personally deliver it to us.

Trampoline

Almost everyday on his return from school our son heads for his trampoline. 20 minutes later many of the frustrations of the day are put to the back of his mind.

Late night dog walking

Walking the dog never really helped our son. He was often too concerned about bumping into others. We would be having a happy conversation but suddenly someone would appear on his radar and he would be lost to anxious social thoughts. Almost by chance we then found the delights of night time dog walking. At night no one is about in our village. We have the fields and lanes to ourselves. Now it has become an excellent stress reliever. We frequently use the walks to plan out in detail the next days schedule.

Bad things league table

Every so often we run the bad things league table. We both list all the things worrying us. We then work together to rank them in order of how much pain they are causing us. Points are awarded for the severity of the issue, it’s frequency and how difficult it is to solve. It quickly identifies the stuff we need to focus on or prepare for. Because it’s done as a league table our son finds it easy to talk about and work with. For the issue which is the league winner we then spend a few minutes working out a couple of actions which might help knock it off its top spot for the next league table.

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One of the activists 100% guaranteed to raise our spirits will feature in the next post…

Top Cat Trumps

Our son has always loved Top Trumps. It’s the same ritual every time. Before we play he loves to line the cards up in order for each of the categories. Clearly the girl cat is not a fan of straight card lines. Apart from the cat the other thing which frustrates our son with the game is that he has to rely on me to read out the text on each card.

We continue to try and work together on our son’s dyslexia. Some progress is being made. Although he still struggles in general he now can just about spell the player names from his favourite football team. He can spell my teams player names as well. ‘Loser’ covers that one.

But for all the progress he still can’t read the books he is so desperate to enjoy. This is made worse when he hears other kids talking about the stuff they have read. So I have bought him a reading pen. Basically it’s a pen shaped scanner with a headphone. It reads out scanned text. He has used them sporadically at school and they do give him a sense of independence.

We have opted for the C-Pen Exam Reader. Will report back on its performance. However today a very happy boy enjoyed reading a comic by himself. Plus the scanner works on Top Trump Cards. The signs are good.

Jelly Bean Challenge: How many ScoobyDoo movies and episodes have been made?

Different sites have different numbers but going to use these as our marking scheme

Shows (not including cross overs and stuff not including Scoobie) – 406

Films – 39

Specials – 11

Total about 456

My guess was 350. Son’s guess was 399. So again I visited the Jelly Bean Lounge. This time no bullet in the chamber – lucky to select normal apple flavour. However due to earlier attempted cheating I was forced to select a second bean. This time I can confirm blood flavour is revolting.

The next challenge was set by a random question setter we have found on the internet. The question is how many types of poisonous snakes live in Australia. Apparently the answer “too many” is not specific enough.

Bridges

Sunday seems such a long time ago. I just love the quayside area of Newcastle. Yes it’s built up. Some of the architecture is 18th century housing modern wine bars, restaurants, fast food joints and pubs. But it just seems to work and dovetail together.

But the highlight for me are the bridges over the River Tyne. All so different and just stunning.

Too often people look towards the famous Tyne Bridge and forget to look in the other direction.

Son was really brave and made it into the football stadium. He enjoyed the full Mr Men display from his dad. He even got animated with the pompous and bumbling referee (without prompting). For anyone who follows English Football – Mike Dean is infamous. Yes it ended up with my team losing again but that misses the point. It was one of those days where our son ventured into a world which is not his and rather enjoyed it.

Fungi

This little beauty has appeared in a shady corner of the garden. Possibly something to do with it being an area favoured by the pup for his early morning constitutional. I was going to pull it up but …

“Dad don’t kill it. It’s got as much right to be here as us”

Already getting the all so familiar sinking feeling of an argument slipping through my grasp, I tried one feeble counter thrust. An incoherent ramble about weeds.

“What’s a weed?”

That vail of defeat rapidly falling towards me … one last throw of the dice … it’s the wrong type of plant in the wrong place (all those years in the greenhouse with my gardening dad and that’s the best I can dig up!!!!)

Well strictly speaking that’s not a plant , it’s in the separate fungi classification. Also who defines what the wrong type of plant is. Didn’t you tell me that being different is one of life’s blessings”

Total defeat. The weed, sorry no – plant, sorry no – fungi STAYS. Now I have to build him his own little fence to keep the pup away. Deep joy.

Probably

One of the most frustrating thing about autism is that nothing seems to be certain. You can say the same about Dyslexia, Dyspraxia and ADHD. The stock reply to questions seems to be “probably”. It feels a bit like that old beer advert “Carlsberg, probably the best lager in the world ”

  • Is Autism hereditary – probably
  • Are environmental impacts associated with Autism – probably
  • Are Autism and Dyspraxia linked – probably
  • Will the behavioural aspects of Aspergers become more pronounced as he gets older – probably
  • Is his Dyslexia linked to his Aspergers – probably
  • Is ADHD linked to Aspergers – probably
  • Will a coach or therapist help with Autism – probably
  • Is a main stream education the best option – probably
  • Could going to a special school help – probably
  • Would home education be more suited – probably
  • Will the loss of his mum have a long term impact on his Aspergers – probably
  • Will he get any specialist bereavement counselling – probably
  • Would educational psychologist be able to provide a tailored educational programme for our son – probably
  • Will an educational psychologist assess our son – probably
  • Could medication help – probably
  • Could medication make it worse – probably
  • Is Aspergers and Sleep Disorders linked – probably
  • Could the use of a reading Scanning pen help with his Dyslexia – probably
  • Could Occupational Therapy help with Dyslexia – probably
  • Could Speech Therapy help with Dyslexia – probably
  • Could the use of a reading scanning pen hinder any potential reading improvements – probably
  • Will the use of coloured lenses help with Dyslexia – probably
  • Have we now ruled out that coloured lenses will not help – probably
  • Will my son get any additional help during his secondary school life – probably
  • Are we trying every available route to try and unlock his full potential- probably

Probably, probably, probably….

Apart from the definite diagnosis everything else seems to have been on a probably basis. That’s frustrating for a parent as all you want to do is try and find the best course of action for your child. It’s more frustrating for the child as he or she tries to come to terms with life and the future.

But one thing is not probably, it’s not maybe, it’s definitely. When your child has had a bad day at school. When the parent is crying inside with the frustration of not being able to take your child’s sadness and anxiety away. When you need a lift.

The pets never let you down. They are our Ghostbusters our Captain America. Guaranteed to save the day and lift the spirits. They don’t need a proton pack or a shield. Just a few cushions will do the job. What a hero. Son and Dad happy again – probably for the rest of the day.

Night out

A few weeks ago I was contacted about an old school reunion. Surely this was an excuse for a night out. My first night out since the world changed over two years ago. The old me would have been really excited about seeing some old friends and having a fun night out. How times change.

This potential night out sent shivers down my spine and I agonised over it.

  • Where am I going to find a child sitter. A child sitter my son is comfortable with. A child sitter with experience in autism. I couldn’t come up with one viable option. After our son was born we hardly ever went out as a couple. If we did go out for a night, it was as a family. But as the autism became more prevalent these family nights out stopped. But at least one of us could stay with our son if the other partner wanted to go out – it worked well.
  • Because the venue was over an hours drive away, even a relatively short stay at reunion would have meant an extended period of childminding.
  • How would I react having my first evening/night away from our son in over two years.
  • Would I be able to cope at the reunion. It feels such a long time since I’ve done anything socially like this.

In the end I sent my apologies. I’m sure that the correct approach would have been to go. Yes you can list a number of valid reasons why I should have gone. But was I disappointed, not in the slightest. For the night of the reunion we ordered a pizza delivery and watched the two Paddington Bear movies. It was another lovely night. This is my world until our son is ready to fly the nest. Yes it does have its downsides but it is the biggest privilege I could possibly have. I count my blessings for this opportunity.