Posted on by bereavedandbeingasingleparent · 79 Comments

Hope

A mass of pink.

Thankfully every year this happens.

This rose is clearly very old. It’s been here for nearly 20 years. Before that it was at Hawklads grannies house in Thornton le Dale for several years. And before that it was blooming in K’s childhood home. So it’s well travelled and clearly very old. It provides a symbol of hope to me. A beacon. We all need these in whatever form. I am so lucky to have a number of these sources of hope. Some are close by like this one which is next to my bedroom wall and some are much further away. Regardless of the distance and location, they are special to me. So I care for them and yes worry for them. In terms of the plants, we did have a few more of these symbolic plants but slowly the Yorkshire winters and living on an exposed hill have taken their toll. Now we are down just to three of these well travelled old plants. Yes the numbers are dropping each year but the hope they represent still shines so brightly. Each winter I hope and pray that they make it through the rough months. So yes, I am always thankful for another year of those treasured flowers.

Over time I have lost things which are special to me. Things change and that is life. But if I open my eyes and heart then new beauty will enter my life. Hope is renewed and flourishes again. That’s why it still can be a wonderful life.

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Needs trimming

That hedge needs trimming……

Hawklad likes to think that this bush has become so large and overgrown, that if it was one day cut then it might destabilise the earths orbit. Better not touch it then. That’s what I call a quality excuse to avoid hard work. A few minutes later it was absolutely chucking it down. At least we got a few minutes sun.

Well that dreaded day has arrived. Been trying to put it off. Yes Hawklad is now taller than me. Certainly if you include the hair…. Even discounting hair then he is now above me. Waiting till he was 15 or 16 would have been nice. But only just gone 13 – really….

I was happy at 5ft10.5 (179cm). I was just above average height. Yes a few more inches might have given my goalkeeping career a boost, but I was cool with my height. I was the tallest in our family. But deep down I knew my title would be lost. Especially when Hawklad was 9 and the Doctor told him that he was above the 97th percentile for height at his age. 97th is always going to tower over something like the 51st.

Now to work on his weight. He is tall but very slim. He struggles to maintain his weight. He’s underweight for his age and height. That’s a label that I have never, ever had. In the words of his Doctor – if he wants to eat chocolate then let him, no need for calorie counting, just eat…. It maybe that he is always moving, brain always in overdrive. It’s something I have to keep an eye on. Evidence is rising on the link between Autism and eating disorders. He is conscious of his weight but thinks he is overweight. He does love eating salads and vegetables. I need to find ways to get more calories in him in a sustainable way.

At the moment we are probably just about maintaining a balanced approach, but only just. I don’t want to make light of this. Many families and adults are so struggling with eating disorders, which too often end tragically. Much more needs to be understood and done. We will treat this so seriously and will continue to look at options. In our case the best approach often involves humour, so…. So maybe a better baker than me is required in our house. That’s something Hawklad would sign up to.

Posted on by bereavedandbeingasingleparent · 97 Comments

Remember

Sadly I won’t be able to visit here today. Its 50 miles away and currently just so out of reach. My mind will wander there today. Not for too long as my mother would give me a stern talking-to for fussing too much. So I will make myself a cup of tea and take a few moments to remember some mum memories.

  • Her famous meat and two vegetables Sunday lunches. She even amended that to Quorn and two vegetables for an awkward son. Followed by the best ever apple crumble and custard.
  • How she would call everyone (including the pets) Pidge so that she never forgot a name. You knew you were in trouble when she called you by your real name,
  • Going to her house and hearing Sinatra or Cash singing as you went through the door,
  • Walking into her living room and her first words being, Do you want a cup of tea and a biscuit,
  • Sat on a plane at Heathrow Airport with her and she started eating toffees to stop her ears popping. She finished all three packets of sweets before the plane had even started taxiing. And yes her ears popped,
  • The day she went into a small shop for a paper and she ended up being smiled at by one of Europe’s best footballers, who had come in for a prematch chocolate bar,
  • Every year asking me to put a 10p bet on the big horse race. I never told her that I always made the bet up to a £1,
  • Her refusing to be called Granny or Great Granny, so she became little Nan,
  • Every time I would take Hawklad round to see Little Nan on a Sunday and she would somehow have managed to find another Mr Men book which he had never read,
  • Mum with my oldest sister running out of the Dracula museum in a fit of giggles when a man dressed up as the Prince of Darkness had unexpectedly appeared behind them,
  • On a morning finding various little garden birds stood patiently in her kitchen waiting to be fed.

And so many more memories from a truly wonderful mum. So it’s time for a cup of tea and a biscuit. Time to remember. Days like this that photographs from so many years ago become treasures.

Posted on by bereavedandbeingasingleparent · 71 Comments

Life snapshot

The Aspergers life can be racked with anxieties and obsessive behaviours. Additionally Aspergers can frequently coexist with OCD. Add the death of a mum and both grannies. Then on top of that you add a pandemic. Something has to give with that kind of pressure building up. That’s what our son is dealing with and it is so very tough for him. What does that mean in practice. Well here is a snapshot of life and the impact it has on him.

Every ache, every sneeze, every spot, every pain is seen as a potential sign of a serious disease or the C word. Anxieties bring on indigestion and constipation. These are then seen by him as more potential warnings of serious, life threatening health conditions. The natural response was to frequently wash his hands. It was both to cleanse his hands but also an attempt to pour water on the raging anxiety wildfire. Washing to the point of red raw skin. These issues have existed for years but slowly during 2019 slow progress started to happen. The hand washing was just about brought under control. Then the pandemic hit. The progress was instantly lost. Suddenly the months of reassuring talk a out avoiding serious illnesses, the bodies capacity to fight back and the advances in medical science are basically blown out of the water. The problems started to mount up again and escalate to new heights.

  • Hand washing every few minutes. From 15 second washing now to washing for minutes at a time.
  • A reluctance to dry washed hands as towels might be a source of germs.
  • Harmful germs are seen to exist everywhere. Suddenly it’s difficult for him to touch taps, toilet handles and door knobs. Sheets of paper have to be left next to these so he can avoid touching them directly. Even pulling on a shirt may result in the potentially unclean sleeves coming into contact with his hands. Shoes have to be put on without using his hands.
  • iPads and joysticks have to be washed frequently and definitely before he touches them. It’s the same for things like pens.
  • When he strokes his pets he will immediately run to wash his hands.
  • He needs to see evidence that I wash my hands before I touch any of his items.
  • Clothes have to be frequently washed often multiple times a day.
  • Outside he is constantly looking out for flies and flying bugs. If they come too close then he will need to go inside to wash.
  • He has to have his own seat and no one is allowed to touch it. If they do then the seat has to be cleaned.
  • When he goes out the the front door then he consciously tries to avoid walking over any areas that the postman or others might have walked across. When he comes back in them his shoes will need to be completely cleaned. If he ventures through the front gate and into the outside world then on his return he will completely strip, shower and change to new clothes. Those rules apply to me as well.
  • Mouth-washing and gargling is frequently repeated during the day.
  • Any item which hits the ground (inside or out) will need to be deep cleaned.
  • Any new food items have to go into the garage and complete a quarantine period if at least three days.

This is daily life in our little home. I do my best to reassure, reason and modify behaviours. But it feels nothing more than trying to plug a leaking dam at present. One hole maybe plugged but in the meantime another two new holes have appeared. Counselling was there but government cutbacks have taken their toll on services. The pandemic has temporarily suspended specialist help. The result is massive backlogs and no access to help. These are tough times. For him and yes me as well. As a parent you feel helpless, definitely so underprepared for these challenges. But we keep going. We pick ourselves up and go again. Yes we will get there. We will. But it will take time. Realistically maybe well into 2021. In practice timescales don’t matter, we take each day as it comes, fortified by the love of friends.

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Schools out for now

Today we received an email from the Headteacher setting out the plans for the coming school year. Clearly he is being hamstrung by both government rules and the lack of any clarity on those rules. But currently this is the plan.

  • Each year group will be largely kept apart from other year groups.
  • Each year group will return to school on a different day. For our sons new year group that will be September 11th.
  • School buses will run but each child will have a named seat and the bus will be split into year groups. That will mean son will have to sit with 3 girls and separate from the boys he would normally sit with. All pupils will need to wear a mask on the bus and use hand sanitizers when they board the bus.
  • Masks will not be worn at any other time during the day.
  • Corridors will operate as normal but pupils will be encouraged to maintain as much social distancing as possible.
  • Social distancing will not be enforced within the classroom, so room layouts will remain unchanged.
  • No catering facilities will be available at break times.
  • Access to the canteen will be restricted at lunchtime. Pupils will only be allowed to have lunch within narrow timeframes.
  • More hand sanitizers will be available but it will be up to the pupils when they use them.
  • Toilets will be restricted to only 3 people at a time.
  • Year groups will be kept where possible in there own area of the school. Sons area would mean that he does not have access to the quiet room which is set aside for children with autism.
  • Parents will be given details of mental health services available to those children struggling.
  • No onsite temperature checking will take place, that is the responsibility of the parent.
  • If any child is showing a Covid symptom then they should be kept off school. They are also encouraged to undertake a virus test.
  • Class sizes may have to be increased to take account of increased teacher sickness.
  • Pupils will be encouraged to avoid meeting with friends who are not in their year group.
  • School will not be closed if virus cases are recorded.
  • Online tuition will have to be abandoned with the government dictating a full return to normal schooling.

So that’s the plan. I’m so hoping son decides to opt for homeschooling. Frankly opening up large schools during a pandemic with only the minimum of additional safeguards, appears reckless. So many unanswered questions, which the headteacher openly refers to. Why would you shutdown online tuition in schools which are actually up for awards on the quality of that online service. What do families do when they have several children in different year groups. Most people with the virus show no symptoms yet testing is being restricted. Why masks for buses yet no masks for classrooms. How do kids with autism access the autism services which are in a restricted parts of the school. It’s ok giving out mental health service details but those services are already overrun with significant service backlogs (waiting lists of up to 12 months) – kids need help now….. And on and on.

It’s all a bit of a mess really.

Posted on by bereavedandbeingasingleparent · 94 Comments

Potatoes

It’s potatoes for tea tonight….. Something nice about eating your own vegetables. Anyone for chips or crisps or boiled potatoes.

In the end a few went into a warming vegetable stew. Didn’t predict that.

Before 2016 I (We) spent far too much time living the future. Thoughts about retirement. Marriage in the future. Visiting places like Canada and New Zealand – in the future. Planning for retirement, maybe even an early one. Dreaming of moving to Switzerland, down the line. Another child, one day…… And yes worrying about the future. Too much time thinking about what could go wrong with meetings, plans and life. Given all the time spent worrying it’s telling that the one thing that happened was never thought about.

Then the world caved in. That future had just died.

Suddenly my mind set changed. From spending too much time living in the future, I suddenly was living in the past. Reliving memories. Too many what if, why didn’t I – questions. Refusing to move from a door which had just shut permanently. So much wasted energy.

Now in 2020, hopefully the balance is now better. It’s more about living in the moment. Yesterday has gone, tomorrow does not exist yet and is so unpredictable. The only thing I can influence is the present. Just try to enjoy every single moment. It’s not easy but so worth it.

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Meaning of life…

Fast coming up to four years since my little world changed forever. One day maybe Hawklad will write about his feelings. I won’t try and second guess them or put my words into his mouth. So it’s time for a bit more me, me, me….

2016 sent me into some really dark places in my mind. My life was shaken to the point that the foundation’s crumbled. Those dark places are scary and very lonely. I felt completely helpless and alone. I was suffering in silence. Unable to think straight and utterly disoriented. Thankfully I never got to the point of suicidal thoughts but I now better understand why far too many sadly do.

When I did pick up the courage to admit this what did I find. I quickly realised who were true friends and who where not. I found a health service starved of resources and with little interest in mental health. The health professionals I saw operated from the same care pathway protocol. Ask SIX questions to determine if I was suicidal. Once suicide was ruled out I was prescribed some antidepressants and sent on my way. There should be many more options on the care pathway, but these require funding which is just not available. I’ve still got the unopened boxes of antidepressants somewhere. Clearly that pathway didn’t work for me.

What got me through those dark times was our son. I had to give Hawklad the best possible childhood. I had to be the very best parent I could possibly be. I had a purpose. That was the key, A PURPOSE. A meaning for life. A reason to live. Without this I dread to think how much darker those dark places would have been. Things like antidepressants would have just been a short term fix. A way to temporarily mask the real emptiness. It would have been the same with things like alcohol, or gambling or splashing the cash on a new car or big television. Just short term fixes. The only way they would have worked for me would have been to continually try to top them up. Continually trying to hide the real underlying issue. The need for a reason to live. A reason to pick myself up again every time I fell.

So looking back my dark places were fundamentally about not being able to see a reason to live. A meaning for life. Bereavement masked them from my view. Suddenly I had no dreams, had no reason to endure the pain. As soon the parenting penny dropped they slowly started to dissipate. Life opened up again. Four years later I believe that I am living again.

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Love

The summer six week holiday of 2016 started and finished with loss. Since then I’ve been living with bereavement. Maybe a better way of saying that is to say I AM A BEREAVEMENT SURVIVOR. Probably always will be a Bereavement survivor. I’ve been very careful to use the word bereavement. Bereavement is that awful thing that we all must go through in life. It can’t be badged up in any fancy packaging and made it to be something nice. It is just awful, will always be awful. It means death, loss and the end.

Over those 4 years I have come to realise that GRIEF is something different. It’s not bereavement. Grief has an important extra component. Grief has one important word associated with it.

LOVE.

Grief and grieving is another word for love and loving. So grief is completely different to bereavement. Ok it’s intrinsically linked with bereavement and yes in a perfect world, it just doesn’t happen. But sadly it does and often far too early. However here is the key – Grief means Love and that is a beautiful thing. Bereavement is something you try to survive and live with. Grief is love, so is something you will always treasure. Yes it can be so very painful but that pain just reflects the depth of your love. That love will always be there. It will strengthen me. If and when I move onto loving someone else, it will make me much more appreciative of that new love.

So yes I am a bereavement survivor but more importantly I am a better person because of my grief.

K

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Outside

It’s been a wet day. Very wet. The sort of day you only go outside for a really good reason. Which basically means just one visit into the garden today. The best of reasons took me out and I’m thankful for that. Smiles, fresh air and unexpected flowers.

It’s strange how quickly your house can become so claustrophobic. The walls seem to slowly close in. The rooms become darker regardless of how much artificial light you try to switch on. The atmosphere becomes increasingly heavy and foreboding. You cling on to those things that make you smile. Finally it’s has to be the time to brave the rain and breathe again. Quickly the mood lifts. Happy thoughts flood in more quickly. You feel alive again. Even in the rain it’s wonderful to breathe.

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Words

I’ve always wanted to be multilingual. To effortlessly switch between languages. To hold actual flowing conversations in another country. So far that goal has eluded me. But there is always hope. There has to be hope. Es muss Hoffnung geben.

At the moment German is my hope. I’ve found a memory technique which is for the first time allowing me to learn words and the tricky part – the gender. So my hopes have started to rise. So how many words do I actually know. So I counted them. Around 450…. Sounds good but apparently you need about 10000 words to be truly fluent. What’s the German for oh pants. Possibly oh hose…

Still it’s a start. Once I’ve mastered German, I’m going to move onto my next big challenge. Master English. Actually that might be beyond me……