The Irony

The old Apple Tree. Definitely enjoying the sun and the rare windless conditions. A good day for a garden meeting.

Well today didn’t go as planned.

Son was primed for his garden meet-up with his new nurse counsellor. These things don’t come easy to him. Often it’s about trying to build a bond. A bridge. Only when that link is formed can any meaningful work be commenced. He had that link with his last person, we can only hope a similar one is formed again.

So yes he was as ready as he could be. The garden was setup…..

Then the call from Nurse Reception. Unfortunately the counsellor had taken ill in the car and had turned back. Headed home. Really sorry and they will rebook the session when the counsellor is back at work.

So hope that she is alright. These things happen. But the irony.

A session to work on Hawklads Health and Pandemic related fears cancelled due to illness.

The irony has not been lost on him. Oh sorry forget, HES not supposed to get things like irony….. A Doctor once said that to him during a consultation. Hawklad fixed him with a Paddington Bear Stare and said “Are you a proper Doctor?”. The Doctor looking a bit flustered and talked about his qualifications. Hawklad them calmly said “ok a Doctor but clearly not a very good one…..”.

So we just have to wait for another appointment. Absolutely no idea when that will be. Probably after schools go back in September? That’s another potential return complication. It’s certainly added a little to his fears, now. When the meeting does happen I’m betting on Hawklad asking for the garden chairs to be further spaced apart. Thats something which won’t happen at school.

We dust ourselves off and we just have to go again. The cancellation may be for the best. Stops anything unpleasant coming into our safe area. Plus it forces me to do something rather than rely on others. Just got to up my game.

Yes another odd Monday.

Visit

By the time you read this then hopefully Hawklad with have had a garden visit from his new nurse counsellor. We got a late go ahead with lots of safety caveats. Hopefully it’s a start.

Things are not easy for him. The hand washing is escalating. He now doesn’t feel able to touch taps or surfaces. Before he uses anything like an iPad then these have to be disinfected. All bedding including pillows have to be washed on a daily basis. Currently ok in the hot weather, dread to think what it will be like trying to dry pillows in wet weather. Clothes have to be changed several times a day. And this is just living in his home and garden bubble. A very small bubble. He hasn’t physically met up with another person his age since March. Actually I’ve not met up with anyone my age in months – it’s difficult since I predate the Dinosaurs…..

But there is always hope.

We have potential access to counselling. The weather is currently grand. We have a freezer filled with ice cream and slush puppy flavoured ice pops. We have a lovely (if slightly overgrown) garden. Hawklad has his pets. I have friendships. Birds of Prey fly close to the house. Disney Plus is ace. It’s the summer football break so my team can’t get beat. We live in Yorkshire. Nobody can see me make a fool of myself doing yoga.

So yes there is always hope.

Get it

The rain is finally starting to pass. The cold is moving on and the temperatures are slowly rising. Perfect time to visit a Rose.

Over time we all lose things that are so important to us. That could be love, friendships, people we care for, pets, our health, our passions, relationships, parts of our very essence, our personal freedom, a space to breathe in, that perfect job, our hopes and dreams. Life can be so very hard.

Often it’s so easy to think that you are alone dealing with these things. That no one understands. It’s such an unsettling feeling – thinking that no one GETS YOU. Believing that you are alone in these struggles. I’ve certainly been there. When you do open up, the awkward or baffled looks you get. The indirect suggestions to ‘get over it’, ‘move on’ or ‘sort yourself out’. The overt signals to ‘please shut up and change the subject’, not even wanting to listen. Often these come from those who seemingly know you the best or are close to you. Friends, family and partners. You do end up feeling isolated and alone.

But there are people out there who understand, who have been through similar experiences, who care or genuinely will listen. Just got to find them. Maybe they end up finding you. Maybe it’s just a random encounter. They could be many many miles away. That’s what happened with me. I’d given up hope, fully accepting that it was just me alone taking on this struggle. But I was randomly found. Suddenly I was genuinely listened to, understood again. BELIEVED IN. Now I don’t feel alone on this journey. Yes I can do this and if I do fall then support is there. A shoulder to cry on and a comforting hug. Will always be so very thankful for that. 💙

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.

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.

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.

Bit battered

Poor thing has been a bit battered in the recent bad weather. Well I still think it deserves a moment to shine.

I was having a chat with our son last night about how life has changed recently. It’s only really now that some of the implications are starting to feed through. I will only focus on one small part of the conversation as this post could have ended up as long as the extended Directors Cut version of War and Peace.

Son struggles with social settings. It’s a well established element of Aspergers. He will actively pull away from crowds and groups. One of the only exceptions to that has been Rock Concerts. He still feels uncomfortable there but for a variety of reasons he can cope. He can put his hood over his head and no one will notice. He likes the fact that rock crowds seem very welcoming of any person, any look, any characteristic. With the noise no one is likely to talk to him. When the lights go out, no one can see him. You are just one hidden person in a sea of people. Plus he really loves the music.

So far he has seen Iron Maiden, Hollywood Vampires (with Johnny Depp), Alice Cooper, Kiss, Lynyrd Skynyrd, Thunder, Shinedown, Status Quo, The Darkness, The Damned, The Stranglers and Status Quo. He’s also seen his favourite band – Alter Bridge.

Before the pandemic kicked in he was hoping to see more. The likes of Whitesnake, Foreigner, Europe, Ozzy, Aerosmith and The Who. But the pandemic changed the world. Most of these have been postponed or cancelled.

When concerts restart what will they look like. Will the days of standing shoulder to shoulder return. Will people have to wear masks. What number of fans will be allowed in. How close will you be able to get to the band. Will you need to be vaccinated before you attend. Will certain fans be excluded (age, health factors). Will all the fans want to return. Will it just be open air concerts. Will it be the new idea of drive in concerts. Will some bands just give up. Who knows.

The pandemic also changed son’s life. It has sent his social and health fears into overdrive. Changed the balance and how he sees the world. Things which were acceptable have been tipped into the no go area. Those changes might be temporary or they could be permanent. Only time will tell. But certainly his concert days are at best on long term hold. That’s the thing about Aspergers, changes in external factors can have a huge internal impact. Lasting impacts.

Regardless of any more virus related developments, I just can’t see son wanting to go to a concert this year, probably next as well. Maybe that fragile corridor that allowed him to venture into a concert crowd has been broken on a much more permanent basis. We just have to wait and see. Maybe going forward our own music festivals are the way forward. Buy a concert dvd and hold the event in our living room or garden. We can still put the T-shirts on, have the snacks, drinks and a burger. We can even turn the lights out and crank up the speakers. Best thing – no masks required. No queues for toilets as well….

That doesn’t help the concert industry. I just hope they and the bands find a way through this mess.

So maybe that’s no concerts for Dad as well for sometime. But it is what it is. I’ve been so lucky to see so much music over the years. So as I move into a barren concert period let’s pause and see what my memory is like. Lets see how many of the artists I have seen over the years, I can actually remember. The good, the bad and the ugly. I’ve set myself 10 minutes (so I might miss a few). Here goes….

Whitesnake x4, Motörhead, Deep Purple x3, Black Sabbath, Ozzy, Dio, Rory Gallagher, Tin Machine (David Bowie), Scorpions, UFO, Meatloaf x3, Blackfoot, Mountain, Alaska, Saxon, Magnum, The Firm, Eric Clapton, Tom Jones, Ronan Keating (x2) my partner to blame for that…. Blue Oyster Cult, Alice Cooper x3, Gary Moore, Deacon Blue, The Kinks, Kirsty MacColl, Pink Floyd, Nils Lofgren, Killswitch Engage, Birdland, Bernie Torme, Roy Harper, Suzy Quatro, Paul Rodgers, Chris Rea, Marillion, Runrig, Asia, Al Stewart, Neil Young, Peter Gabriel, Tracy Chapman, Terence Trent D’arby, Simple Minds, Lou Reed, Bonnie Riatt, Chrissie Hynde, Jackson Brown, Little Steven, Bryan Adams, Squeeze, Tina Turner, Extreme, Was Not Was, Lyle Lovett, plus those with son.

Ten minutes up….

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.

Red rose

Whisper it very quietly. A red rose in Yorkshire. The white rose is our counties symbol and our historic rival, Lancashire has a red rose. The two neighbours have had bloody civil wars and conflicts over the crown…. Now thankfully the battles are restricted to the sports field.

Not the only battle being waged here.

Anxiety and adverse reactions to it, are very common for individuals who are on the autistic spectrum. It can take so many forms

  • Social fears and crowds
  • Fear of being alone
  • Noise
  • Thunder
  • Germs and illnesses
  • Eating and food types
  • Animals
  • Heights
  • Darkness
  • Bright lights and colours
  • Types of clothing

Too many to list. Some of these may have sensory origins and appropriate medical help should be sort. Whether that help is available is another matter….

Our son has had to face down and battle a number of these fears. One fear in particular has been ever present. The fear of illness, germs and death. These are genuine, life altering fears and anxieties. Fears which became even more real to him when he lost his mum and both grannies in such a short period of time. We were lucky in that finally his medical notes were passed to a young nurse counsellor. Over the last few years she has done stellar work with him. He trusts her fully – no mean feat. Unfortunately government cutbacks have resulted in far less contact time. Any contact has now temporarily ceased due to the pandemic.

The pandemic has really shaken things up. For our son it has ramped up his fears and anxieties. Now they are off the chart. This manifests itself in so many ways

  • Constant hand and face washing,
  • Frequent hand washing finally taking its toll on the skin,
  • Repeated changes of clothes,
  • Reluctance to leave the house or garden,
  • Refusal to touch many items – telephones, handles, gates, letters, food packaging, surfaces and clothes which have not been washed that very day,
  • Trips to the bathroom every time a bug or fly brushes against him (summer and living next to farm land mean that can be every few minutes),
  • Refusal to venture anywhere near strangers and anyone outside of our household – one of the reasons I can’t arrange for someone to come and repair our boiler,
  • Any food deliveries or parcels having to go into quarantine for at least 4 days before they are let into the house.

So we battle on. Eventually his nurse counsellor will be able to see him but until then it’s self care.

  • We try to maintain a diary. Record and document the anxieties. Try to get a handle on what we are dealing with. Is it improving or getting worse. What improves things and what makes things worse.
  • Trying to balance avoidance with small doses of learning exposure. Yes avoidance works but it doesn’t address the route cause. So carefully controlled small anxiety exposures needs to be factored in. Yesterday that involved both of us putting our hands on the grass for a minute. Then without washing our hands observe if anything bad happens….
  • Trying to slowly control the hand washing. Setting a time limit on the seconds he is allowed to wash his hands for. Currently that’s the time it takes to say a nursery rhyme. Trying to encourage him not to use soap for a number of the hand washes. Get into the habit of properly washing hands when IT IS NECESSARY.
  • Yes he has a range of fears but we can’t deal with them all at the same time. So we only ever deal with one fear at a time.
  • Allow as much access to those things which help him relax. If he wants to go on YouTube, or play an Xbox Game, or watch a movie – then he does….

We all have fears and anxieties. Some disappear, new ones appear and some stay with us for life. With Autism and Aspergers these fears can so easily be ramped up. Yes we hopefully can find ways to eliminate our worries but realistically some fears are with us for life. I guess the secret is trying to provide a range of tools and strategies which we can have at our disposal to help manage those fears when they strike. In that way it still allows us to keep living and enjoying life. That’s the plan with our son.

Finding Popcorn

The very observant amongst you will notice a plant pot which looks remarkably like a drum from a tumble drier. Best and safest use for those which had a habit of catching fire. Ours did get modified to make it less likely to explode (after many months of waiting) then promptly died one day after the new warranty period ran out. So better get some use out of it. So we acquired a large metal plant pot.

Some things are more challenging to find and acquire.

Things like Popcorn. It’s a staple part of our Saturday Night Home Movie Experience. Well it has been until now. At the moment it is like gold dust at the supermarket which is our only real pandemic option. For two weeks it’s been sold out. Maybe it’s become the new currency of the survivalists. Replacing bathroom paper (toilet paper). As a result I suddenly have a real urge to go popcorn hunting. Must be able to find some popcorn somewhere. Must have a rummage.

Another challenge which is far less enticing and attractive is the prospect of trying to get our son to venture past the front gate. So far the tentative attempts have failed. Even just venturing onto the road, just a few paces from the front gate is proving a challenge for him. This won’t be just isolated to this family. So many others will be in a similar position. Trying to deal with these issues largely without any help. Our leader of the opposition party has been pushing the need to address the mental health consequences of the last few months. Sadly our government doesn’t seem to get it. The response seems to be well we have released the lockdown, just go out and act normally. Unfortunately that response is typical of the last 10 years. Mental Health funding has been one of the easy targets for government cutbacks. This has led to untenable waiting lists for some essential children services and worse. Many parts of children and adult support have just disappeared. You can just see the likes of Johnson and Hancock smirking while telling us

If you have the money then you can buy help, if you can’t then tough. It’s your fault for not having massive bank accounts. Let’s think of the real issue. How can we get our hands on the profits from a switch to a US type health care system.

So we will keep trying to take those little steps. Trying to raise awareness of this issue. This is going to be a long and very winding road. Importantly it’s a road which will be driven by our son. He will decide when and where to take those steps. He has to find his own way and be comfortable with it. Today he won’t be going down that road. That’s for another day.

So I will go back to dreaming about popcorn hunting.