See what the wind brings.

Sometimes you just have to sit back and see what the wind brings.

Drying clothes outside is proving a bit of a nightmare. Every few minutes the wind brings in another shower. Thankfully the bench cover is just about big enough to quickly chuck over the clothes horse. Given the dirty state of the cover rather defeats the purpose of washing. But needs must.

Sometimes you just have to sit back and see what the wind brings.

Further lockdown measures are set to be announced for northern areas next week. For the last month our part of the north has been an island. Surrounded by areas having significant pandemic outbreaks. Here it’s been reasonably calm. That means that things like shopping and daily life have continued without too much disruption. But is that about to change. Has our area succumbed.

Sons school has had confirmed cases. The local cafe had had to close due to a local outbreak. All public events are being cancelled (that includes Christmas events). Now the local city is reporting a huge growth in cases. 79% rise in 7 days, our rural area has gone up by 60%. Higher than some of the areas already under lockdown. Police are starting to enforce lockdown laws.

It’s the confusion that makes it so much harder for people. One week the PM tells people to grow a backbone and get out. Then suddenly the PM tells us it’s our fault fir getting out. Some places (often government supporting areas) have high infection rates but are excluded from lockdown while other areas with lower rates are forced into lockdown.

Feels like we as an area are about to be forced into a tough, restrictive extended period. All we can do is continue with our own family approach. Try to shield son from as much of the negative, doom loaded news. It’s the last thing he needs to hear. Much better for his (and my well-being) to sit in the back garden and see what the weather brings in.

Which way

In life you get asked so many questions. But some questions keep repeating themselves. Like the classics ‘Are we there yet?’ and ‘where’s the remote control?’.

Then there are other questions. More vexing questions. One question keeps popping up. I’ve been asked this by family members, other parents, teachers and even once a nurse. It does have a number of variants but it’s basically the same question

Will your son get better?

Will his Aspergers improve?

Will his Aspergers improve as he gets older?

I’m no clinical specialist. Just a bumbling parent. But here’s my take on the question.

Aspergers is a lifelong syndrome. It’s not going to get better. Its not going to be cured. It’s not going to disappear. What might change is that over time the individual and the family may develop strategies to help deal better with some of the situations life will throw at them. Also some of the specific symptoms may fluctuate over time. For example in a number of individuals something like repetitive hand flapping may become less prevalent with age. Also Aspergers often coexists with a number of other conditions – dyspraxia, ADHD, dyslexia…. It is possible that some of these conditions could improve with time. For example our son has with hard work started to overcome some of the issues which his dyspraxia and dyslexia had caused him in his earlier years.

So yes it is possible that improvements may occur. But here’s the thing, it’s not guaranteed. Each individual case is different, unique. Things may stay the same with age. They can also get worse with age.

So we just don’t know.

The Clinical Psychologist who did the full review of our Son was quite clear. The majority of his Aspergers related traits will stay with him over his life. However at around the teenage period changes may start to occur. It could go either way. He could become fully independent or he may regress and may need some form of life long support. She talked through a number of possible scenarios. One scenario was that some improvements would occur potentially in the areas of dyslexia and the diminishing of some of the repetitive behaviours. Another scenario painted a downturn in his existing anxieties and fears. This could occur naturally during his teenage years or could be triggered by a single significant event which effects his view of the world. Tips the balance in his risk assessments of the world. This could lead to significant mental health concerns and potentially social isolation. Where we are sat currently, we are not a million miles away from that scenario. The triggers – the death of his mum, a pandemic, his teenage years…. He is currently physically cut adrift from the world. His fears and anxieties ramped up to the rafters.

Nothing is set in stone. We just have to go with the flow and see what life brings. It could be still be a fully independent life. But it could also entail a lifelong requirement for support. In this country we don’t cater for the latter scenario. Support has to be fought and won for young children. That support is at best is patchy. During the teenage years the support tends to be reduced due to funding cut backs. By early adulthood the support has completely vanished. That’s a sobering thought for parents in this position. It really is.

Vexing

Time passes. It keeps on passing. A wander round this small graveyard provides proof of this. Many of the once proud gravestones are now weathered beyond recognition. Time passes.

Five years ago I had just driven to the crematorium to pick up my partners ashes. They joined my mothers ashes on the sideboard. At that stage a real urge to get on with laying my those two precious spirits to the earth. Definite external pressure for this. I remember listening to one so called expert talk about it being unhealthy for society for people to linger on those who had left us. Maybe that’s the hidden message there – it might be ok for the person grieving but it’s uncomfortable for everyone else. Anyway it seemed like the right thing to do. The only thing to do.

Within weeks I had scattered mum on her family grave. I remember it so well and I have already wrote about a bizarre memory from that experience. I was alone in the graveyard. As I started to clear some earth away, to my side I noticed a little squirrel. A squirrel apparently doing the same thing on a neighbouring grave. Was it a case of burying nuts or was it a burial. It made me smile, two souls getting on with important stuff, maybe the same stuff, almost happy to have company there. Mum would have loved that sight.

Now time to get a move on laying my partner to the ground. Partly in England and partly in Switzerland. A bit of a logistical nightmare. I secured the paperwork to allow for the transport of ashes overseas. Ready to begin.

Five years later…..still waiting to begin.

Now I worry. Have I left it too late. Have I missed the window of opportunity to follow my partners wishes. Being a single parent and with son’s Aspergers, European travel is a nightmare – feeling like it gets more problematic every year. No similar excuse for the English sites. But it just didn’t feel right. Should I really put our son through more grief when he was still so young. No right or wrong answer here. We all need to do what’s best for our close ones and ourselves here. Unfortunately just like most things, just like European travel for us, it seems to get more daunting the longer it goes on.

Have I missed the best time to do it?

That feeling is making feel very anxious at present. Will we ever get round to doing what we have to do? Was life really supposed to be this vexing…..

Help

Sometimes you need help. Help with routine stuff. Something like Broadband. So Saturday brought a broken service. Our broadband doesn’t like rain. Certainly doesn’t like 14 hours of solid rain.

No service, no internet on an afternoon is not going to cut the mustard with a teenager. So it’s time to make the dreaded call to the BT helpline. One hour later I finally speak to a human who then decides to play me some more annoying music. Another hour later I’m handed to a service engineer. Having explained the situation in some detail to the expert he agreed to look at his system. After 20 minutes of much tutting the expert told me that the service was ‘not optimal‘. When I told him it was in fact ‘not working’ I never did get to hear his response. Rather an automated voice kicked in to inform me that the department was now closed and would reopen again at 8am on Monday. Dont you just love service…..

So we have resorted to my very patchy mobile signal as our broadband option. It kinda reminds me of what it was like a few years back with dialup internet. How did we survive.

Angry armour

Chestnuts are ready. Shame about the angry armour they leave behind.

Maybe I could do with some angry armour. It’s actually very possible given the advertising I’ve been receiving recently on my iPad. If I say angry armour enough then surely the Skynet computer system will flag up angry armour and then it’s adverts about sale offers on the latest Hulk Busting Ironman suit.

In this modern every situation is a selling opportunity world I understand the need for targeted advertising. But really can it be a little more, what’s the words I’m looking for – pigging accurate.

If I was targeting me then I would send adverts about decaf coffee, sleep inducers, heavy metal cds, gym kit, parenting guides, Pet Hair removers, Newcastle United footy shirts and muppet memorabilia. Guess what!!! Over the last month not one single advert received on any of these things. So exactly what have I been targeted with….

  • Adverts for international holidays to every country except the only one I write about every Sunday.
  • Stairlifts – we live in a bungalow.
  • Hunting clothing – I’m a veggie.
  • Swimming costumes – I can’t swim.
  • Gas Fires – the nearest gas main is 15 miles away, we can only use electricity and home heating oil.
  • Ornamental elephants – why?
  • Online casinos – never once done any like that but I have watched Casino Royal.
  • Prefabricated office space – why?
  • A home delivery service which is not available in our area, in fact the nearest location the service covers is 150 miles south of here.
  • Garlic oil – garlic sets my IBS off.
  • Sports Bras – we are a male only household, what is the point – just a minute, actually…….
  • Snooker tables – not played in 30 years.
  • Wine offers – I’ve been tea total in over 6 years.
  • Farm machinery – bit overkill for our little garden lawn.
  • Ornamental Storks – why?
  • Prams and baby walkers – no chance of babies here.
  • Makeup – Looking at me in the mirror I need cement.
  • And wait for it – a weeks advanced cooking course………

Is it me or am I just missing the point. They must have a very odd view ot me. Maybe tomorrow I get the chance of my angry armour.

Insignificant

It’s a big sky. Its easy to feel very small and insignificant stood under it.

There are so many times when parenting is the best gig on the planet. Then there are other times…

I was trying to convince our son that he had washed his hands enough. He had been at the soap and water for nearly five minutes. Everything I said didn’t seem to have any impact. Finally he decided that was enough. He asked if the towel was clean and had it been washed that day. I assured him that was the case. He left the bathroom and I looked at his hands. His very red and sore skin. That’s what happens when you wash as often as he does. We are using skin friendly soap. I water it down further. But his hands are still red. I encourage him to use his skin care lotion. But his hands are still sore.

These are the times I feel inadequate as a parent. Missing the support of another person. Someone to share the load. Definitely running out of things to try. Actually ran out of things to try. His health professionals try to help but they see this intrinsically linked to the pandemic. Get the pandemic under control and we can start to bring his hand washing under control – hopefully. But that doesn’t make me feel any better as a parent. Feels like I had one job and I dropped the ball on it.

So I’m stood under that big sky. Feeling insignificant. Time to breathe. Reset and go again. Yes significant but definitely not beaten yet.

Family History

I was checking my phone for a photo for the blog and I came across this one. Yes Hawklad has been playing Pokémon Go again. Either that or my last selfie was a bit of a shocker.

I am listening to a cheery Pearl Jam cd and thinking about family history. For a lesson today he is trying to list some of his family tree. It’s easy with my partner as we can go back at least 300 years. Lots of documented history. Long line of Quaker and Liberal Political tradition. An MP. With mine it’s more patchy. Yes we can go back to someone born in 1805 but there are lots of blanks. Someone who refereed a big national football semifinal. Someone who walked on the Jarrow Poverty March. A female relative who went to be an exotic dancer in London at the turn of the last century. Someone who was gassed in World War One and survived. An uncle of mine who was a pilot during the Korean War. My Dad who fell in love with Iceland while serving during World War Two. But that’s about it. So many gaps.

So as Hawklad thinks about being partly English, Welsh, Scottish and German (maybe even more diverse), I have a new project. Time to try and fill in some of these family gaps. I owe that to my son.

It’s so important that we keep our own history alive because it forms a narrative to how we are.

It’s wet

It’s definitely wet today. Pouring down and very cold. All rather depressing so let’s take the time to look at a bit of nature’s colour.

Do you ever have those conversations. Those conversations where the words seem to head in one direction but actual the conversation clearly ends up in a totally different place. Ever so frustrating.

I’ve spoken to school about Hawklads enforced school at home project. I thought I had explained to school that although it’s kind of working it was far from ideal. In particular

  • He is getting absolutely zero feedback. He is submitting work but getting nothing back. The other kids are clearly getting marks and comments back. That’s clear from some of the teacher comments on the set work tasks. But those comments are always aimed at other pupils. If he doesn’t get feedback then what is the point.
  • Have the teachers forgotten that he is dyslexic. Comments like ‘if I don’t get round to sending you tasks for the lesson then just read a book on the subject’ don’t really help….
  • Have the teachers forgotten that he has difficulty in hand drawing. He struggles with fine motor skills. I can’t believe the number of times the set task is to hand draw something – unbelievably that is currently not Art.
  • Some of the subject teachers are still completely forgetting about Hawklad. No subject material at all has been made available.

Anyway the school seemed very supportive, so surely job done. Clearly not as the school responded with an email basically saying that they were happy that things where going so well. They will keep going with the current approach and they hoped that we would keep in touch…..

Sounds like it’s time for me to most definitely stay in touch with them right now.

Tomatoes

Sometimes it’s the little things….

I’ve just started my fifth year on my grief journey. A journey I would must definitely would rather had not started but now I’m on it, well I might as well make the best of it. And that’s what I am trying to do. For several years it was a nightmare. Just awful. But over time things have slowly moved on. Now it’s definitely good weeks and bad days.

I still get so many reminders of the process I am going through. Many of those are repeated experiences but every so often I still find new reminders.

I was checking the garden for things I could harvest for tonight’s meal and I came across these small tomatoes. Then a thought struck me. There was a time when this was not something I would do. Yes I would grow the tomato plants but that was it. My partner loved tomatoes. She would go out every day I see what could be picked and eaten right there and then. Those days have gone and now the ripe fruit sits and waits for me. That thought made me sad. But life has to go on. Hawklad would like a few fresh tomatoes on his plate. He currently doesn’t feel comfortable touching items outside so it’s down to me. Life goes on. Pick some tomatoes, think of my partner then it’s time to get on with living. Time to focus on the here and now. Find happiness in the world around me. It is most definitely there.

Odd sandwiches

The one thing that you get used to as an Aspergers parent is routine. Lots of routine. That’s tough for parents like me as I am not really a routine person. I’m a bit more impromptu. Bit more going with the flow, see what happens person. Maybe some would call it winging it. Which is most odd. On most of the old Aspergers tests I would score very highly yet on one I was way down. Routine.

On this Hawklad is completely different to me. He needs his routine, his order, his plans. He needs to have that safety net and he needs to follow them. It’s reflected in so many things. If we are driving somewhere then we need to follow the usual route, even if that means a much longer journey. He likes to wear the same types of clothing – if he grows out of them then we need to replace with almost exact copies. He has a TV and movie schedule which he sets way in advance. We will often watch the same movie over and over again. School lessons have to follow the timetable without variation. We need to buy the same types of pens and pencils. He likes to go out in the garden and talk at the same times. He doesn’t like me to do things like change my hairstyle or try new clothes. It’s funny I’ve been wanting to shave my hair off for years but that’s just not allowed.

Break the routine and he is immediately hit with waves of self doubt and fear. Over the years we have tried to work on this. Slowly trying to introduce change. Occasionally trying to introduce unplanned but definitely fun routine changes. But it’s never really worked. Routine is just a key part of who Hawklad is.

Another area of much needed repetition is food. He has the same seven day food menu. The same foods on the same days, year after year. Trying new foods is just not something he does really. Normally ends in failure.

Dad what on Earth is that.”

It’s a sandwich.

Yes I can see the bread but it’s what is between that which is the worry.”

That will be cheese and onion crisps. It’s going to be one of the great gourmet experiences. A crisp butty. A crisp sandwich.

Really. That is just wrong on so many levels.”

It’s fantastic. Go on try it. It’s a family tradition. Your Little Nan would always be treating herself with one. But her crisp butty would be made with Ready Salted crisps.

Just No Dad.”

Ok. But if it’s not a crisp butty then what about a chip butty. A sandwich made from fried chips (fries) with heaps of tomato ketchup. Another true taste sensation.

Erm NO. You can keep that as well.”

Ok Hawklad what about a fish finger sandwich. Fantastic.

Not happening. That’s a tradition which is not passing down the gene line anymore. It ends with you.”