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Cold

Today we have an outbreak of manbola. Streaming cold, coughing, sneezing, sore throat …. just didn’t want to get out of bed. I have to admit I am a …….

The dog walk must have been some sight. Gloves, 2 T-shirt’s, Fleece, Jumper, body warmer, waterproof and woolly hat. And that was just the dog.

It’s one of the big downsides of being a single parent. Whatever the relative severity of the manbola – you don’t have the option to not get out of bed or just sit in a chair with a hot water bottle. No one to share the workload. So you just have to get on with your jobs while croaking out conversations with our son. Powered by hot ginger drinks and tea. It’s days like this you want to drop your caffeine ban.

It also gives you plenty of worries. It emphasises that many single parents (and a number of parenting couples) often operate without having an option b in place. If something serious happens to a parent(s) what happens to the kids. It’s a sobering thought.

I am an amateur at these things. So many parents have had much worse situations to deal with for so many more years. I have so so much respect and admiration to you heroes. So we battle on. In the scheme of things manbola isn’t that bad really.

AND one definite plus of manbola is that you just can’t smell the cat litter when you change it….

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Anxiety

Anxiety is far too often an unwelcome visitor to our house. I have suffered from it since childhood. It got so much worse after the world changed. Never ending road. Virtual all the worries now focused on our son. Not sure I am that bothered about myself these days….

This morning I woke to that unwelcome guest again. So many voices in my head. All saying the same thing … son is due a anxiety meltdown. Unfortunately that was the truth.

Anxiety and Depression are real inhibiting factors for so many in our society. Research clearly indicates that the risk of suffering from these awful conditions are increased for those living in the world of autism. At least a two fold increase is often reported. Yet from personal experience this was never identified in any of the briefings or guides we received during our journey. It is just not addressed appropriately by society. This can and does have catastrophic results. In our case it took several years of pushy parenting before our son started to get some help.

It’s so difficult to unpick the anxiety for our son. Is it Aspergers related, is it Dyslexia related, is it bereavement related, is it human life anxiety, is it all four….

With our son we have a frequently returning swirling mix of worries and demons. They recede then they blast back. On really bad days they all materialise at the same time. He has many repeating spectres.

  • Dyslexia and it’s unwanted consequences.
  • Friendships and social interaction.
  • Not understanding this strange, alien world.
  • Fear of death (his, mine, his pets, his remaining family, the people he cares for).
  • Related to the fear of death is his fear of illness. Everything is catchable. Everything can be a risk. Every sneeze, every ache, every speck of dirt is a potential harbinger of a health disaster.
  • School. Homework, rules, punishments, no support, cold and scary environments.
  • Feeling different, feeling inferior, fearing the finger pointing, fearing being laughed at.
  • Running out of money, going broke, losing everything.
  • The climate, wrecking the natural world, world politics, Brexit. World is going wrong.
  • Being alone.
  • Having to fit into large social groupings.
  • Fear of being long term depressed.

This is someone so young.

Today it is the return to school and fear of illness. The anxiety vortex is building strength. The bag of tricks we try only helps take the edge off but doesn’t fix today. All we can do is just be busy. Constant activity. Try to stop the mind thinking. These apply to both of us. My world is full of anxiety today as well….

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Cragfast

Somedays you wake and the world is full of hope. Yes it’s a challenge but you stride purposely towards the light.

Whether it’s the alignment of the stars, or the moon, or the lack of sleep or the weather or the cards are stacked against you or the demons have woken ….. but for whatever reason somedays the world appears different. You are alone and operating without a safety net. It’s is dark, cold and scary. Often I liken the feeling to a Tolkien like scene. You are stood on the ramparts of Helms Deep. It is cold and the rain pours. You are besieged by an evil army of Orcs. But this time you are stood alone and Gandalf isn’t riding over the hill top to save you that day. You feel like hope has deserted you. A battle you didn’t ask for and one you cannot win this day.

In climbing the dreaded word is cragfast. Basically you are stuck. You can’t go up, down or sideways. Less polite terms also exist for this ……

My mind drifts to The Eiger. Back to 1936. Four young climbers attempt to be the first to scale the infamous North Face.

Andreas Hinterstoisser, Edi Ranier, Willy Angerer and Toni Kurz.

On the ill fated ascent Hinterstoisser opened up the mountain with an astonishing traverse now named after him. Tragically they decided to remove the ropes they had fixed in that section. A huge storm set in so they tried to retreat. They discovered that the Hinterstoisser traverse could only be completed in reverse with the aid of fixed ropes. They were suddenly out of options. A suicidal decent was attempted. Over the next few hours three climbers died. Rescuers got close to the remaining climber Toni Kurz. But they did not have enough rope to reach him so they had to retreat leaving the young climber stranded. They left to the echos of a climber pleading not to be left alone. The next morning a second rescue attempt was launched but they found the young climber close to death. He quietly said “Ich Kann nicht mehr” – I cannot go on. He died feet from rescue.

The German 2008 movie of this tragedy “North Face” is one of the bleakest movies you will ever see. I have stood at the bottom of the North Face. Your mind can’t help thinking of those brave young climbers. Too many climbers have been lost here. It’s a truly cathartic experience.

What is the point of this post. I am not sure. Maybe it’s just about saying that life can be bleak and dark. You will come across times when you become stuck – cragfast. You find times when you are on the ramparts alone. You hope that when that happens people will come to save you. But rescues sometimes fail – even heroes stumble. These are the times you have to stand alone. Those are grim times. Times we must endure. You hope to just make it through the night. The morning may bring new light or a hero. Or you may have to struggle on for another day alone. It’s a sobering thought.

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A letter dilemma

Out of the blue I received a letter addressed to my partner. It was a friend who clearly hasn’t heard the sad news yet. Reading the letter was heartbreaking as this lady had tragically lost her husband. She was clearly in a bad place.

This leaves a dilemma. Do I tell her or not?

I know the right thing is honesty and I should inform her. And yet…. does someone who is in such a bad place really need another piece of bad news. I told our son when he noticed that I was distracted. Interestingly he said that I shouldn’t make her even more sad. I had assumed his Aspergers Truth Filter would have made him say – just tell her straightaway. It rather puts a lie to the frequently heard argument from experts that people on the spectrum are cold and uncaring.

Even after a few hours I can’t make my mind up.

It doesn’t help that I remember when my partner found out about a friends death. She had met this wonderful lady from Channel Islands on a trip to China. They became good friends. I remember she came to stay with us for a few days. We hadn’t heard from her for a few months. Unfortunately a birthday card my partner has sent her was returned unopened and marked ‘person has died’. It had such a profound effect on my partner, I’m not sure she ever fully healed from it.

The circumstances are different but do I want to put someone through this now. I really don’t know. I just don’t know….. What I do know is that I can feel those icy fingers of sadness starting to circle my soul again.

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12 uncomfortable things

Our son realises that he doesn’t naturally fit into this world. Certainly not in its current format. His attitude is basically

I might wait for the world to come round to my way of thinking but just in case I had better dip my toe in the icy cold water which is the big bad world. It’s something I’m not going to enjoy but it’s probably worth it….

As part of this process we have agreed to visit 12 new places this year. Doesn’t sound a big commitment but in-fact it’s huge for our son. We will have our first new excursion next week….

Tonight we started discussing potential places to visit but somehow the conversation careered off topic. It suddenly became name 12 things you like about you and your life.

I went first and it was a really uncomfortable experience. I do find it difficult to think constructively about myself these days. So much easier thinking about negatives. Anyway for someone who basically hates himself I kinda did ok

  1. Son
  2. Memory of my partner
  3. Family
  4. Pets
  5. Friends
  6. My eyelashes
  7. I am pretty fit
  8. I occasionally can be mildly funny
  9. Musical taste
  10. Decent imagination
  11. I’m kinda resilient
  12. I’m still here

Son went next with his 12 things he likes about his life

  1. Family
  2. Jimmy – Dog
  3. Bluey – Cat
  4. The gerbils I am going to get for my birthday (mad scramble – news to his dad)
  5. My dreams (don’t care if people think it’s not right for me to have dreams, I still dream)
  6. My house
  7. I’m funny (don’t care if lots of people think otherwise I still think I’m funny)
  8. I’m cool (don’t care if lots of people think otherwise I still think I’m cool)
  9. I’m clever (don’t care if lots of people think otherwise I still think I’m clever)
  10. I’m tall
  11. My memory (don’t care if lots of people think otherwise I still think I have a good memory)
  12. My ambition to be a scientist or a zookeeper or a wrestler or a goalkeeper or a falconer or a historian (don’t care if people think I can’t do these things …)

I think this reveals that he is quite comfortable with himself. The problem is that he doesn’t have that much faith in the outside world. I could go on but GERBILS are a pressing concern……

Posted on by bereavedandbeingasingleparent · 100 Comments

Let’s break some rules….

Our school like so many others prides itself on discipline and the behaviour of its pupils. This is achieved with an inflexible set of rules. If a pupil breaks a rule then it’s an automatic negative. Four negatives in one week means detention. Repeated detentions bring the sanction of isolation. A serious negative can lead to an immediate spell of isolation. It’s all a bit Dickensian – was going to say Shawshank Redemption but that’s probably not a good example to use really…

The rules must come in about 7 volumes so too many to list. But let’s give a flavour by quoting some of the negatives which our son has seen issued.

  • Unbuttoned shirt
  • Incorrect positioning of the tie
  • Throwing a snowball – after school and not on school premise
  • Small coloured markings on white sport socks
  • Parent not signing off the weekly planner sheet
  • Forgetting your planner or text book
  • Incorrect colour pen used. Has to be black, unless it’s a correction which has to be green – still haven’t worked out what blue is supposed to be for
  • Forgetting to bring your cooking apron
  • Bringing the wrong measurement of food ingredients
  • School iPad running out of battery
  • Carrying snacks in a rucksack
  • Going to the wrong lesson if you misread the timetable
  • Getting lost in the school – it is a big school area with several separate buildings
  • Bringing the wrong type of calculator
  • Repeatedly asking to go home if you are unwell
  • Pointing out that the teacher had got a fact wrong (son’s only negative so far)

And on and on

Our son came home yesterday to say that he had to complete a series of corrections in his book. Failure to do so would result in two negatives…. When I checked he had one answer correction to make – fine. But he also had to correct spellings. As you can imagine with dyslexia he had many. We had the dreaded red “spelling mistake” label on almost every line. I gave up counting at 30.

The school has another rule which says that for every spelling mistake the pupil has to write out the correct spelling three times.

Call me awkward but he’s got dyslexia. How can this be right. I have spoken to the school on several occasions but I am told it is the rule for all pupils. Well bugger it. I have emailed school to tell them that he is not doing the corrections. We will add the words he has struggled with to our home reading work. But he is definitely not writing out the corrections three times. If he gets a negative for this then I have warned them that I will consider legal action against the school. U.K. organisations need to take reasonable steps to avoid discrimination on the grounds of disability. Under the Equality Act Dyslexia is classed as a disability. OR the school could just give me the detention – that could be really interesting (unbelievably I have never suffered that punishment).

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Being stupid

Son accidentally knocks something off a shelf and it’s smashed. Son is mortified but I try to reassure him that it’s fine. These things happen to everyone. But he’s not happy.

“It’s because I’m stupid. It’s the same as why I am in the bottom set, it’s because I’m stupid. It’s the reason the teachers don’t spend much time with me, it’s because I’m stupid.”

Poor kid. It is so difficult for him. His logical mindset cannot fathom out school politics. He can see kids he consistently gets higher marks than sitting in sets above him. He can see teachers focusing on other children in class – often the disruptive ones. He hears me and the health professionals complaining to school about them not recognising his potential – but nothing happens.

Today homeschooling is looking a likely option. Practicalities still to be worked through. Finances will be a challenge. Maybe looking for a switch in the summer. This allows for one final push with school. Months to sort out the details – plenty of time.

Piece of cake. Talking of a piece of cake.

Our Prime Minister is still telling us that we can do Brexit in a few weeks. Really.

She assures us that they have the best people handling the process. Really.

My Dad wouldn’t have trusted them with a stick of rhubarb never mind the keys to the country.

But our Government does have it uses. They give us so many examples of real stupidity. I told our son about how our Government had decided that we needed extra emergency ferry capacity. The Government decided to give the contract to a company which has never run any sort of transport service and unbelievably doesn’t have any ships….

When our son heard that he smiled and said “Now that is properly stupid. Maybe I’m not as bad as I think I am.”

Son you are brilliantly gifted. Unfortunately the Government is not…..

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Which mountain?

It’s just over 2 years since we lost her. It doesn’t feel like 2 years. It still just seems like last month..

This photograph was taken on our last family holiday. It’s the view from the hotel. The view brings back so many happy memories. But it’s a sobering thought that the next time I see this view for real it will be on a trip to scatter her ashes. That wasn’t in the script…..

I feel a bit like Dr Strange in the last Avengers movie. Scanning all the possible life outcomes and probably only seeing one which involved ashes within such a short time span. Unfortunately that one came to fruition.

On that last holiday we spoke briefly about if something happened where she wanted to be laid to rest. I never paid too much attention to it. Surely that life option isn’t going to happen for many years – I would make a really crap Dr Strange. But now we have a bit of a problem. Can I remember the preferred sites. Two in the UK are reasonably simple and straightforward. The two in Switzerland ……

One is easy as it’s an instantly recognisable location, we have been to it several times before. The other location is a tad more problematic. She wanted to be scattered at the same location as her beloved Dad. It’s at the top of a mountain I have never been to. Assuming I have remembered the right mountain, Switzerland are not short of one or two. Then I can vaguely remember the instructions. Get the cable car to the top. Start the path down and it’s next to a bench near a small pile of stones. Unfortunately looking at the internet the mountain has at least 8 paths and I’ve counted at least 20 benches. As our son helpfully points out – you will know if you have picked the wrong mountain or wrong bench when that bolt of lightning strikes. No pressure then….

Two years ago this genuinely caused me huge anxiety and anguish. Now I can see the funny side. That’s progress.

Important note. Trying to arrange taking ashes abroad from the U.K. is a nightmare especially if you are planning to fly. You need to arrange a specific flight time with the airline. Then get the undertaker to securely package the ashes and complete the required cover note which has to include the flight details. The airlines I spoke to made the process so difficult. Also straight after the cremation the last thing you want to sort out is air flights. Fortunately the Eurostar train option is so much friendly. They told us to get the ashes securely packaged. Then book as normal when you are ready – just pre warn security when they check your bags. It’s another train journey for my partner then – she loved trains.

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When dreams fade

The pre Valentine onslaught is in full swing. One advert claiming to have the perfect gift for my partner, every base covered….. Really – every base?

I’ve always been a daydreamer. As a child dreams of football, cricket, astronauts and mountains dominated. They gave hope. The years went by and still I dreamed. Dreams of happiness and a successful career. Then I met my partner and the dreams changed. Suddenly dreams focused on starting a family. Then our son was born and dreams shifted to happy family life. Few years further passed and it became more likely no more children would arrive – again my dreams shifted. Now they were dominated by images of us happily growing old together. Walking hand in hand. Sat together in Parisian cafes. Sharing new experiences in new lands. Dreams and hopes intertwined. Then the world suddenly changed….

Now I live in the moment, just focused on the practicalities of the day. When I daydream now (very rare) these are entirely focused on our son. Dreams involving me have gone. When I look – nothing. They died with my partner. No happy thoughts of growing older. Just the deepest blackness. I have heard this phrase used before. Living our lives through our children. It is so true. One role.

One day I do hope my daydreams return. Some things don’t change. I am still a daydreamer at heart.

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Enlightened by a flapjack

Son has always had a healthy appetite, but unlike his dad it doesn’t seem to impact on his body shape. At his last school (with less than 50 kids) lunch was very relaxed, with room to spread out and time for him to have several helpings.

At his new school meaningful intel about the practicalities of the school day has dried up. No feed back from school and a son who often wants to quickly forget about the traumas of the day. So I had no idea how lunchtime was going. I payed the school meal bill online and assumed a balanced diet was being consumed. He never complained about it so it must be ok – that’s my 479th bad parenting example, complacency. I did notice that he had a remarkable appetite on his return. Often eating me out of house and home.

This week as I paid the online meal system I noticed by chance an option to view what the menu was. Reassuringly it looked pretty good. Then I noticed another well hidden option which was tomview what he had actually selected. The selection was very enlightening…

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

5th Sept – Pasta Main Meal

6th Sept – Macaroni Cheese (very surprising as he hates this)

7th Sept – Flapjacks x2 (sweet granola bar)

After that every day has been Flapjacks x2 apart from 2 days which showed up as a Tuna Sandwich.

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

By my calculations that’s 184 Flapjacks since September. Bugger – that’s my 480th bad parenting example, must stop swearing.

So it was time to have a more in-depth fact finding chat with our Son. Apparently on the first two days only his year group was in school. It was fairly quiet and he enjoyed his pasta dish. On the second day he thought the sign said pasta meal and was a bit miffed when he found macaroni cheese on his plate. After those two quiet days school lunch has become a nightmare. Too many kids, too little space and limited time. For a main meal you have to queue up for about 20 minutes. After that you need to circle round the dining area waiting for a space to become free. A bit of a nightmare for anyone, a lot of a nightmare for someone with Aspergers. To jump the queue you can opt for either a Sandwich or Flapjack or icebun. Queue jumping it was then for our son. I was puzzled why he broke his sequence of Flapjacks heaven with two Tuna Sandwiches (especially as he doesn’t really like bread). Apparently they had sold out of Flapjacks….

I have now spoken to school but they can do little, just too many kids to feed. I suggested staggering the lunch starts but apparently this cannot be done logistically. Really!!. They will however think about some dyslexic friendly food signage.

So I’m not sure where this leaves us. Packed lunch is not an option. These have to be dropped off at another part of the school prior to the first lesson and this would just provide more school stress for him. He’s never going to queue. So it’s Flapjacks, sandwiches or go hungry. I suppose at least he is eating something- 481st bad parenting example, it’s not a healthy option. Will just have to ensure he gets a good breakfast and have plenty of food in for his return.

One last thought.

After our conversation he asked what was for tea.

Rather sheepishly I replied

“I baked a fresh batch of Flapjacks this morning”

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

For a different and far more astute take on the autism school lunchtime trials please read Robyn’s great post from earlier in the week.