Reality

Late last night I was watching the news channel and a government expert was being interviewed about people struggling to leave the house since lockdown was eased. We will ignore the fact that the easing has been halted and areas are starting to fall back under emergency regulations. The experts take was that it was perfectly safe for everyone to go about their normal business. People should get out, go to the park or better to a restaurant. Those struggling should be brave and get out. Those still struggling to get out should arrange to see a health professional. This Government had put in support to facilitate this.

Ok…..

We’ve been lucky. We might get to see a nurse this month but we’ve had to fight tooth and nail for that. Because of cutbacks son has not been seen by a Paediatrician in well over 2 years now… 6 of his 7 support services have been removed. But again we are lucky. Far too many don’t get any support at all.

It’s 3am and I heard our son call. He had gone to the bathroom and because he had gone barefoot he desperately needed to wash his feet. So just before the morning bird chorus started I was running the bath so he could ease his anxieties. He is currently not able to touch taps. Towels can only be used once before they are washed. His bedding has to be washed daily. He has to wash his hands every few minutes. He can’t even touch is own shoes and clothes with his hands. Tell me how he is supposed to be brave and just get outside. The government just has not got the slightest idea of the problems facing so many in our communities. The health professionals just don’t have the resources to cope. It’s taken a pandemic to expose the true folly of focusing cutbacks on mental health and support services. When will our leaders wake up to the reality of life for so many households in our countries.

Snappy

Lockdown did have some advantages. One being – No Aeroplanes. Something about seeing a sky without any evidence of man made birds which are polluting the atmosphere. Now the number of vapour trails are slowly rising but clearly not back to the crowded skies of pre pandemic times. Which is still a bit of a win for the planet. Got to be pleased about that.

I did something that I’m not pleased about. Not at all. I snapped at Hawklad. Not a massive snap, but still a snap. Some post arrived and I quickly put the offending letters into the designated quarantine area. I quickly washed my hands then headed out to cut the grass.

Dad have you washed your hands.”

Which towel did you use.”

Which soap did you use.”

Then…

I don’t think you washed your hands for long enough. Can you wash them again.”

Maybe I was tired. Maybe it’s because I had gone 16 hours without food. Maybe I just wanted to get the grass cut before it rained. Maybe I was annoyed at myself for not washing my hands for long enough in the first place. Maybe it’s being seemingly stuck in Groundhog Day. For whatever reason, I snapped. Slammed the front door shut, did that teenage sigh, let out a little mild expletive, stomped to the bathroom and purposely washed in the noisiest fashion possible. Not massive stuff but unusual for me. We’ve all been there. Even Super Hero Parents are human…….

I quickly apologised and went outside to cool down. Easily done in today’s Yorkshire weather. All I could think about was school. What happens if he does decide to go back on the 11th September. His hyper hygiene mode will meet a school system which is basically winging it. Maybe they could make Hawklad into the Hygiene Monitor. Wow he would sort out the teachers and pupils. Definitely the iron fist of authority. But in all seriousness, the teachers and other kids will just not have the time or inclination to get anywhere near the hygiene levels that he’s got used to at home. The levels he needs for his own well-being. I can see some of the less patient teachers issuing so many negatives to him. But that was me just a few moments ago.

So more food for thought. As is the fact that in the broken cloudy skies, I can see three vapour trails. That’s the most in months…..

With one hand

August 2018

It’s been too long since I stood by the sea. Far too long. For someone born in a small north eastern seaside town, that’s tough. Genuinely don’t know when it will happen again. My gut feel is not in 2020. Our Government of Fools has now start reversing it’s rushed reopening plans. Yesterday it was perfectly safe to visit cinemas without a mask. Today you MUST wear a mask for your favourite movie. Yet kids and teachers are still expected to go mask free in classrooms. Last Friday we were being told to support the holiday industry and travel as it was safe. Just days later that all changed and more countries are being urgently added to the quarantine list with thousands of tourists now already out there. Even though those countries have much lower rates of deaths and infections than the UK.

Tougher lockdown regimes are being reintroduced into some areas with significantly rising infection rates . One such area is uncomfortable close to us. That is doing nothing for Hawklads anxiety levels. And now his garden consultation with his new health worker is in doubt. Such visits are now under review again. Somedays it feels like it’s one step forward and then one back. That’s at a time when his obsessive hand washing and fear of touching surfaces continues to mount.

But there is always hope and is it really one step forward, one step back…

When I first started climbing I hated having to retrace steps. One step forward, one step back seemed such a waste. A failure. Something to be avoided at all costs. But over time I learnt wiser ways. Things like climbing in things like pink compression tops and tight blue leggings is really not cool at all. Things like collecting rain water from rocky pools to drink might be a life saver but it doesn’t taste as nice as a can of coke stuffed into my climbing pack. Things like it’s not a great team building idea to lead a pitch when you have spilt asunder your tight blue leggings. I also learned that retracing steps is often a good thing. The times a few moments of retreat and sideways steps actually leads to a much easier and safe climbing way forward.

So yes things are tough and that garden visit would be useful but…..

The word BUT sounds to negative, maybe however is better.

However we do at least have access to the service still. That’s a huge bonus. The garden visit would bring stress currently, so if it doesn’t happen then it’s one less thing for Hawklad to worry about. It also encourages us both to try new things, see if we can find our own way through this maze. There will be things we haven’t tried. Maybe potential help has been there all the time and we just haven’t looked hard enough for it. Too much relying on someone else to find it for us. Maybe the only solution for Hawklad is to bunker down for a few more months until those clever vaccine people find something that works. So maybe retracing some steps is the best way forward.

There is always hope and yes I still have a pair of tight blue leggings…..

Nice

Love seeing a deep blue sky. Today we had glimpses. Nice while it lasted, which wasn’t very long. But it’s better than nothing.

Thankfully we have been able to secure a replacement for his lovely nurse counsellor. Might actually get a consultation sometime in August. Even better it will be in our garden. So Hawklad won’t be stressed out at the thought of travelling 30 miles to the hospital. It’s something. It’s another start. The first stages will be to see if son can build up a link with the new person. These links don’t come easily. If a link is established then work can start on this germ anxieties and obsessive hand washing. It’s a long term project. Certainly won’t be seeing any results prior to the schools returning in September. It’s one step at a time. Some things go beyond my parenting capacity so I’m really thankful for any help.

Where does that leave going back to school. Nothing has changed. It’s still Hawklads call. I just can’t see how he can go back given his fears of touching any surfaces. Even the expert health opinion is that any return is unlikely any time soon for him. It might take months of work to start to see any progress and progress is not guaranteed. The school situation complicates things. On the one hand our PM is saying schools are perfectly safe to open without observing social distancing. On the other hand schools are being warned to make plans for shutdowns starting in October. It’s just a mess.

So I need to make plans for both homeschooling and for a return to the classroom. Must admit I’m currently too tired to think straight on these matters. I will leave it for a week or so. Let’s see if we can sort out a true staycation. Might do both of us good to have break from the worries. Given we won’t be leaving our own little word, maybe staycationing is another way of saying doing the same stuff, just don’t worry about schooling. Sadly it’s still not really Tent in the Garden weather. We need a little more blue skies. That would be nice…..

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.

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.

Really

There was a time when you could put some faith in the UK Government doing the right thing and providing a modicum of truth…….

So the Government are instructing parents to send their kids back to school after the summer holidays. The clear message is that it is perfectly safe. No need to worry. In fact no need for schools to observe most of the current pandemic and social distancing regulations. Those things just complicate the return process. Parents who fail to comply will be fined.

On the other hand….

A number of areas are reporting spikes in Corona Virus cases particularly amongst the younger age groups. The Director of Public Health from Liverpool issued the following warning – “this is a really dangerous moment for case numbers and we need people not to let their guard down.”

When the Prime Minister’s Chief Advisor broke lockdown rules he was defended by our so called leader. Johnson said the following “he behaved responsibly and with integrity and followed the instincts of every father.”

I will happily see you in court Boris….

Penny drops

I tried to get an appointment to see my doctor for the first time since the pandemic hit. That was an experience….

  • First listen to the 3 minute recorded message about the pandemic,
  • Then listen to another recorded message about the importance of wearing masks,
  • Now listen to a message about the doctors and nurses avoiding making unnecessary face to face contact with patients,
  • Then join the queue for a receptionist,
  • Finally a real person. Need to describe any symptoms and the reason for calling. I can have a telephone appointment for later in the day,
  • Doctor calls and basically says that it is currently unsafe to bring patients in for appointments. Much safer to stay at home and avoid crowds. A few questions and then it’s a quick medical opinion. Time for stress busting, relax, have a break and hopefully things will sort themselves out. Probably been trying to burn the candle at both ends since 2016.

Having a break is not happening so it’s stress busting time.

  • Eating healthily – well I will try……
  • Mediation – I really must get my head round this, more free apps downloaded…..
  • Mindfulness – I thought that was mediation, free apps downloaded……
  • Yoga – the mind is willing the body is less inclined to bend…..
  • Plenty of sleep – I’m trying, been trying for ages……
  • Go hill walking – not going to happen this side of Christmas, tempted to add 2022……
  • Calming and relaxing music – I guess that rules out metal then…..
  • Make time for friends and doing fun stuff with them – I certainly will……
  • Find more time for reading – it would be great if I could……
  • Herbal teas – ok I can do this one……

In a nut shell I will try to improve things but need to recognise the current life limits. Maybe the secret is to be grateful for the life I have and to smile. Yes smiling more is a good start.

Sometimes the penny drops….

Hedge

A completely random photograph of our hedge…..

A hedge which has many roles. Too many to list but I guess the main ones are

  • Photosynthesis,
  • Making more hedges,
  • Survival,
  • Home for wildlife,
  • Boundary marker,
  • Barrier to try and keep a dog this side of it,
  • A Barrier to try and keep a football this side of it,
  • Boost to Son’s feeling of security,
  • Something to look at,
  • A home of long lost toys, balls and garden gnomes,
  • And now something to photograph.

Our brush with hospital this week reinforced one issue. Many people including single parents often have few backup options. Plan B’s are rare. I was sat trying to get my head round what would I do if son had to stay overnight on the ward. I wouldn’t leave him (wasn’t allowed to leave him alone). So how was I going to

  • Bring in a change of clothes,
  • Fetch stuff to entertain him (his iPad and a charger),
  • Bring some food and drink which son would actually consider having,
  • Fetch my phone charger,
  • Feed the pets, let the dog out into the garden,
  • Put a new parking ticket on the car,
  • Bring my reading glasses,
  • Check that I had locked the back door……

Yes in normal times I would have a couple of family options. But these are not normal times. They are either unavailable or would take many hours to arrive. No other immediate options. Thankfully son was allowed to go home at 11pm. But it’s a stark reminder that many of us operate with the most fragile foundations. I was lucky as at least an option existed, even though it was far from practical. Too many people have zero options. That’s a sobering thought.

Questions

A hospital visit is now an even more unpleasant experience. Masks at all times except when you were in a separate room with no other people. One temperature check. All staff with masks and gloves on at all times. The place filled with clearly very panicky people keeping their distance. The children’s ward only allowing one parent in with a child.

But here’s a thought for you.

We faced far more detailed pandemic questioning from the Boiler Repair team (over 20 questions) than we did when we had to access two separate Hospitals and a Surgical Theatre (one question) ….. I guess that’s what happens when people are confused, scared and left without clear trustworthy guidance from the Government.