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 · 79 Comments

The third sequel

The third sequel already. The Trilogy done in one day. Eat your heart out Peter Jackson.

So this is the third instalment in the ‘what has changed over the 6 months of pandemic isolation’ saga. This time it’s what has changed for me. I guess this one is called The Return of the Kermit the Frog King. So what has changed then for me.

  • With Hawklads increasingly pronounced Social and Health related anxieties the last six months have seen a ramping up of the parenting pressures. Fewer breaks, more challenges and yes less support. In the UK small amount of support that has survived the Conservative Funding Cutbacks largely stops when kids hit the teenage years.
  • Have become a home educator. A school facilitator. A Classroom Supplies specialist. Much smirking…. After 6 months I’m still winging it.
  • I’m sleeping less. Much less. Just can’t seem to reset the insomnia cycle.
  • Certainly more isolated in terms of actually meeting people outside our little bubble. In 6 months I’ve seen family members twice, one work colleague (and good friend) maybe three times, neighbours a handful of times, the local shop workers maybe a couple of times a month, the dentist once, one visit from the boilerman, a few health workers and doctors. That’s about it. Oh actually forgot one person. The Postman, the only person I see regularly. I count his fairly frequent waves as my most regular physical contact. Luckily I have lovely online friends.
  • With not meeting too many people I’ve started noticing human life more. I notice dog walkers in the fields, cyclists, passing cars, voices from the street, even planes in the sky. A reminder that a bigger world still exists out there.
  • My conversation skills have never come easy to me. I have to work on and practice them. That’s just not happened for months. Even on most phone calls I can feel myself becoming increasingly wooden.
  • My largely unseen dress sense is becoming increasingly avant-garde.
  • I have lost 6lbs but you wouldn’t notice it. Having to resort to consuming far too much Soya (Soy) which isn’t great for my tummy. No I’m not pregnant.
  • I’ve stopped running and walking and road cycling. Must admit it’s not doing my old contact sport injuries any good. Bits are starting to seize up. So I’m trying to find my inner Yoga. Or as I call it Controlled Falling Over.
  • Work has dried up. This was supposed to be a really busy year. Lots of new jobs and major events. In practice that all was cancelled. Remains cancelled. Some plans have been put in place but really I’m not going to get much work until 2021.
  • I’m more able to fill my day without leaving our little household world. No need to visit shops daily, coffee shops, cinema, visit family or friends. I’m not saying it’s a good thing, but it comes easier to me now.
  • I do tend to overthink things now. Can have days when I do sober too much time internalising stuff. With me that’s not necessarily a good thing. It’s such a short stroll to self doubt and negativity.

Yes things have changed for me. They will continue to change as our personal lockdown is not going to end anytime soon. Potentially months more, maybe much longer. With us being an Aspergers Family that was kind of in place before the pandemic. Maybe many of these changes were already happening before the March lockdown. They have just become more pronounced. Maybe these are longer term changes. Maybe it’s much more than a three episode trilogy. Maybe it’s a permanent feature.

Posted on by bereavedandbeingasingleparent · 92 Comments

Where did that go

Where did that go? Where did the summer holidays go. For so many families, where did that lockdown go? That’s 7 weeks of summer and exactly 6 months of lockdown.

We leave the summer holidays like we found them. Grey.

Many leave the lockdown as we found it. Well actually that’s sadly not strictly true here in the UK. The daily rise in pandemic and the rate of spread (R number) is actually higher now than when it forced us all into lockdown. I guess the confusion is the same. Some times it’s safe to meet in groups then at other times it’s considered most unsafe. Sometimes masks are required, sometimes they are not. Get tested but please don’t get tested. It’s safe to meet work colleagues but most unsafe to meet friends and family. There are those in high risk groups but you don’t need to worry about that. You must observe 2m social distancing but it’s ok if you don’t especially in pubs and at Horse Racing events. Don’t worry about the details it will be fine.

But for some families and households, the lockdown is most certainly not over. The Government seems to be demonising those in that position. We are being unpatriotic. Not doing our civic duty. Letting others down. As a result support is being pulled, threats made, blamed for the problems of the country and fines starting to be issued. I can assure the so called Government that it’s not out of choice. We are dealing with the reality of life. And that life is messy, complicated, unpredictable and frustrating. We have to deal with the details.

That part of life has not changed during the summer holidays and lockdown.

Posted on by bereavedandbeingasingleparent · 132 Comments

Scary creatures

A good blogging friend was taking about finding a big spider in her garden. That friend is on a different continent. A place where you get spiders that are big, scary, poisonous and they even jump at you.

Did I ever tell you that I am not great with spiders.

So the prospect of scary spiders brings shivers down my spine. A movie comes to mind – Arachnophobia. Give me Jaws and Sharks anytime. Sharks need our love especially as Trump has decided to bully them as well now.

Scary spiders. No, no, no.

Hawklad loves to go to the zoo and handle spiders. The bigger and more deadly the better. The last trip I just about heard him say as he handled a Tarantula- ‘Isn’t she lovely….’. It was difficult to hear him as I was stood 30 yards back, hiding behind a wall. That’s great parenting……

Fortunately for me I live in Yorkshire. The land that time forgot. We don’t really do scary animals. Those cows can look at you in a funny way. Ferrets can nip a bit (especially if they are in your trouser pockets). Don’t get in the way of a squirrel and his nuts. Those Scarborough Seagulls are hooligans when you have a bag of chips. Get on the wrong side of stick of rhubarb and it can very awkward.

But we don’t really do scary spiders or insects. A few small and timid spiders. This is as big as it gets. A Daddy-Long-Legs. The most delicate creatures going. We end up desperately trying not to hurt or damage them. Even I can get up close to them. That’s the kind of spider and insect I like. Friendly and most definitely not one that is going to eat me.

Posted on by bereavedandbeingasingleparent · 72 Comments

2020 the year music stopped

2020 has been some year. Is it really only August. Time seems to have so slowed down. Many things have just stopped. Live Music most definitely.

Looking back to the start of the year it all seemed a bit different. We were looking forward to a fantastic concert year. I had worked my socks off and secured a whole list of discounted tickets. It was on paper a great year of gigs and some top bands.

*********

The Who

Whitesnake

Foreigner

Europe

Aerosmith

Wayward Sons

Ozzy

Saxon

Deep Purple

Blue Oyster Cult

Hollywood Vampires

Killing Joke

**********

On paper that’s how it will remain for this year. All cancelled some pushed into 2021. So yes something potentially to look forward to. BUT…….

Has the concert zone closed for us. It was always a delicate balance for Hawklad. His enjoyment of the music, the spectacle, a chance to see the bands he loves to listen to. Balanced against his social anxieties. His fears of strangers and crowds. The positives just outweighing the negatives. As a result he could get himself to concerts. Yes it would need his hoody pulled up until the lights went out. But he was ok doing that as he felt that rock crowds were easy going and accepting of all kinds of looks. This was confirmed on our first concert trip. Dad wore the most embarrassing T-shirt he could find. Hawklad was reassured to see that I didn’t get one single strange look and was never asked to leave.

But now it’s a different world. Hawklad definitely sees it differently. Heightened fears and anxieties. The ‘is it ok to attend concerts’ calculation he would perform has got a different answer now. The negatives outweigh the positives. I know the medical advice is that this new world view could become a semi permanent switch in his Aspergers. A dynamic which won’t automatically switch off when the pandemic finally goes. It may take years. May never switch back. We just don’t know.

So maybe that’s it for our concerts. If so then it’s kinda fitting that three of the last bands he got to see just happened to be his favourites. Alter Bridge, Kiss and Alice Cooper.

So let’s enjoy the memories. It might be the year Live Music stopped for us but it doesn’t mean that music has stopped. Most certainly not.

Posted on by bereavedandbeingasingleparent · 55 Comments

Reflection

This is one of those posts that start with a single thought. No real idea of the direction. Yes it starts with me being reflective.

When I’ve been at my lowest points in life, I’ve felt so very alone. Maybe the two go together. It’s such a hard thing to describe. The world closing in on me. Darkness and a lack of hope surrounding me. But worse is the feeling that I am alone. There is no one who understands me. No one who really cares. No one to turn to. No one who will just listen. Even those close to you seaming so distant, so utterly unable or unwilling to understand. The two worst emotions for me – No Hope and Being Alone. Here’s the thing. That wasn’t actually the case, it just felt like it. I had closed my eyes. Stopped looking. Started listening to the negative voice in my head.

But I’ve been so fortunate. Even in those dark times, I’ve managed to eventually find something which has pulled me through. Either a caring hand or a flicker of hope. That’s all it takes sometimes. But don’t believe for one moment that it is easy. Just reading a few words probably ain’t going to do it. Sadly too many don’t find a positive way. Having been in those dark places I can so understand that now. It’s so hard to pull yourself out of the darkness alone. AND it does feel like you are completely alone.

For those in the darkness. I send you my thoughts and love. I just hope you find something. That caring hand. That bit of hope. The will or energy to reach out. You may find that beacon of light already close to you but often it doesn’t come from the obvious sources. But so often IT IS THERE. WE can do this.

Posted on by bereavedandbeingasingleparent · 69 Comments

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.

Posted on by bereavedandbeingasingleparent · 66 Comments

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.