Posted on by bereavedandbeingasingleparent · 62 Comments

Uncertain

Over the last few days nature has been providing its very own washing service.

Many people are doing more and more washing over the last six months. Especially hand washing. That’s certainly the case here in our little corner of the world. Since about the age of 6 son has had anxieties relating to touching unclean objects. This would result in fairly frequent hand washing exercises. Thankfully only a few seconds of soap and water was sufficient to calm the fears.

That all changed in 2016 when his mum died at a relatively young age. Suddenly the world was filled with uncertainty and unseen dangers. His hand washing rapidly spiralled out of control. It became more frequent and went on for up to a minute at a time. Thankfully he started working with a wonderful nurse counsellor who over a couple of years brought his hand washing back under control. He was taught to wash like a nurse and get it done in under 20 seconds.

Then a pandemic hit. All the reassurances, all the hard earned confidence was blown out of the water. His fears re-emerged worse than ever. Life is now an ‘avoid touching anything and hand washing’ fest. He will wash his hands several times an hour. When he starts washing, he will wash for anywhere up to 5 minutes. All without trying to touch the tap and only using elbows (usually my elbow).

Any delivery or letter has to be taken into the garage for several days of quarantine before it is opened. After I have touched the item then I need to change my clothes completely and be seen to wash my hands. If I venture out then almost full decontamination procedures have to be followed.

Welcome to 2020.

This time it feels different. More engrained. The health professionals agree. All we can do is try to manage the situation until he sees that the pandemic is under control. A vaccine works and he has had it. But even then there are no guarantees. His fears and anxieties may never truly fade. Maybe they will but only until the next killer bug emerges. The future is uncertain. It is uncertain for many.

Posted on by bereavedandbeingasingleparent · 70 Comments

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.

Posted on by bereavedandbeingasingleparent · 43 Comments

Revolution

I was asked about if our son was any closer returning to school. This is his fourth week at home since the school returned full time. Well two things from today really paint the picture.

First an email from school advising that the school had now had its second confirmed case. This time a member of staff. Apparently the confirmed cases so far are not considered to be linked. A small number of individuals have been asked to isolate for 14 days and the school remains fully open.

The second was a conversation with our son. His words need no more elaboration.

“Dad I go into meltdown if the bedroom window is open. In fact I can’t even touch the window handle to close it. I just can’t go back. Can’t go back for some time to come.”

And there is our answer in a nutshell. At present government ministers are telling parents to ensure there kids go to school as it’s perfectly safe and is in fact our civic duty. To not do now apparently makes you a bad parent, someone who is not acting responsibly. Must get those words on a T-shirt.

I will continue to act irresponsibly and avoid doing my civic duty. Our son will return to school when he is ready to do so, when it is safe and when he is comfortable doing that. Until then – Viva La Revolution…..

L

Posted on by bereavedandbeingasingleparent · 73 Comments

School, school, school

Captain Chaos is carefully guarding his new great tasting toys.

That Apple Tree needs a serious trim. I had a go today. Managed to fall out of the tree. Bruised shoulder but the fall ended with a fabulous forward role which was perfectly landed. The boy has still got the moves…..

School definitely still has some moves. Sadly not always great ones.

We are in the early stages of a long road trying to manage and help with our son’s serious anxieties. Anxieties about illness, unclean things, viruses and diseases. It’s so easy to tip him further into the realms of excessive hand washing and isolation. Yesterday started off heading a little too close to the rocks. News broke that the small local cafe had to close as two members of staff had tested positive for the pesky pandemic. I’ve managed to keep that from him so far. I can imagine his reaction to the thought that the pandemic was only a couple of miles away.

So while I was managing the news – SCHOOL got to work. Firstly an email was sent to him letting him know that the virus had arrived at the school. Then we got to the Food Technology lesson. All about poisoning, bacteria and viruses associated with food. James was asked to research the main offenders, the symptoms and the associated health risks. So now food has been added to his worry list.

A rather cheesed off email was sent to school…..

And today in Science it was all about diseases. The class being asked to research childhood diseases and viruses. Further they were asked to look at the risk of inherited medical problems.

Thanks that was a big help….

You couldn’t make it up…..

Posted on by bereavedandbeingasingleparent · 55 Comments

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…..

Posted on by bereavedandbeingasingleparent · 58 Comments

Questions

This is a little tree which is close to our house. It sits at the side of the farmers field which backs onto our garden. It’s close by as a couple of my garden football shots have nearly hit it….. In the years that we have lived here it has never grown. It just seems to lean over a little further each year. I know how it feels…..

So many questions today. So many school work queries.

“Dad what are your thoughts on Gladstone‘s and Disraeli‘s political reforming achievements. They didn’t go far enough and do you think their colonial record negated what good they did do?”

“Dad what do you know about DNA structure and it’s impact on identical and fraternal twins?”

“Dad how would you write the mass of the earth in standard notation?”

“Dad in Animal Farm what does the character Moses represent and his relationship to Soviet history?”

“Dad have you ever studied John Agard’s poem FLAGS. Is it about the dangers of patriotism?”

“Dad I can’t get my head round French Verb Conjugation. Can you explain it to me?

As any self respecting parent would do I looked suitably vacant and thought wishfully back to the questions about which was my favourite Tellytubby. I was good at those questions.

Posted on by bereavedandbeingasingleparent · 44 Comments

Next stop

Ever got the urge to keep opening those gates. To just keep walking in one direction. To see what you find. No boundaries. No limits. To be free.

One day I will walk to the next stop.

Now if I packed enough egg sandwiches and tins of Pepsi!! then I will eventually arrive at the city of a Hull on the North East Coast. If I have been very organised and packed my floatation rings then it’s next stop Amsterdam.

What’s the next stop on the school at home journey?

I think Hawklad is now starting to realise that a return to school this month is out of the question. His fears and anxieties are not going to be overcome within weeks. So now he is starting to look at January as the next window of opportunity. So it’s looking like another 3 months of school at home (at least). We will continue to try to stick with the school teaching schedule. Cover the subjects they teach. Use whatever teaching materials they make available. If they don’t then we won’t lose any sleep over it. That’s more time for him to try and relax. To try and enjoy life. It’s often easily forgotten that too many are losing out on huge parts of their precious childhood. It’s not all about formal schooling and meeting government targets.

So be it. We have got this.

It’s completely his call. He decides what the next stop is.

Posted on by bereavedandbeingasingleparent · 81 Comments

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.

Posted on by bereavedandbeingasingleparent · 45 Comments

A window

A brief window to step outside and breath. Otherwise it’s been horrible. Many of the places around us have closed due to bad weather. Must admit education feels that way a bit currently.

UK School doesn’t really work for those with additional educational needs. The traditional classroom setup brings much stress. School at home brings a little respite.

So that’s two weeks ticked off from the next stage of the school at home approach.

I was asked why I didn’t call it homeschooling. Basically we are still trying to follow what the school is teaching. Not setting our own learning agenda. Having to do this just in case our son decides to return to school when he is able to. So it’s not the freedom of homeschooling, it’s basically school but at home.

So in two weeks we have kind of found a way of trying to keep up with the class. Covering the same subjects. In some lessons we are getting all of the material which is being used in class. In some we are getting some of the material and we are trying to fill in the gaps as best we can. In a few subjects we are basically getting nothing so we are just winging those – maybe we are following the class, maybe we are heading in completely the wrong direction.

He is getting virtually no pastoral care from school. Absolutely zero feedback on work submitted, not sure some of the teachers are even reading it yet. A couple of the teachers do occasionally send a message asking if he is ok with the work set. That’s it really. On a Thursday all the pupils have to select an option for an additional lesson. It’s supposed to cover non curriculum activities. It’s about learning new skills and building confidence. It could be a gaming option, archeology, performing arts, sports, astronomy. He hasn’t been included in this programme – says it all really.

In my mind I have already settled on the best way forward. It’s for our son to leave school and opt for full on homeschooling. But it’s his call. It’s his future. So when the time is right then he can make a decision. But I have to say school are not bending over backwards to sell themselves.

L

Posted on by bereavedandbeingasingleparent · 69 Comments

Grouse

Most definitely not like this today. The strange yellow thing in the sky has most definitely gone on holiday. Hopefully not a long one.

Currently I am looking out of window into the rainy garden and thinking. I’m guessing this home at school project has many months to run. As a single parent it’s trying to get my head round the logistics of that. At present there is not much work and what work there is can be done at home. Shopping can be done through a combination of home delivery and very quick trips to the small local store. But what happens if I need to make a longer trip out. Hawklad is not comfortable at all being left alone.

The options are limited at the best of times and these are not the best of times.

Normally our options would be one of two sisters (but one-off those is 2 hours drive away, and both don’t drive) and a couple of local parents who have known Hawklad since the age of 5 (they are busy so are not often available). Unfortunately under the new Government Lockdown rules all four options are now banned. Breaking those would leave us open to heavy fines. The Government has even encouraged people to contact the police if neighbours flout the rules. The irony here is not lost, flouting rules if you are a member of the government or the dad of the PM is said to be entirely reasonable. Under the new rules our only option would be for a grandparent to stand in. Unfortunately ours have all left this world. But here’s another irony, those grandparents would fall into high risk groups. Those who should be shielding. Are grandparents seen as expendable….

The other irony is that those who would be an option before they were banned fall into much lower risk groups. They can’t babysit for us but I could go to work with them and sit alongside them in an office – that’s apparently fine. We could even put on green camouflage and go grouse hunting together without any punishment. Maybe that’s the childcare answer, we set up a grouse hunting lodge in the garden. The first ever vegetarian one….