Just let this research finding sink in (press on the link for the details)
Autistic people are four times as likely to experience depression over the course of their lives as their neurotypical peers
In the UK the approach is that parents have to fight tooth and nail for any kind of support. The fortunate ones who get some support find out all too frequently that support starts to be withdrawn around the teenage years. Adult autism support is basically non existent for the vast majority.
In our little family world Hawklad is struggling. His anxieties are on the rise. He is stressed out. Trips outside of the house and the garden are currently impossible for him. We are fortunate in that we do have access to some psychological support. Sadly from a Team who are stretched to breaking point. But we still have some support. For how long that support continues – who knows. He’s a teenager. This is the only support he gets now as all the other services have already been withdrawn.
How many other of autistic families are facing the same challenges. TOO MANY. How many autistic adults have been let down by society. TOO MANY.
This is grim.
So my first Covid vaccination is in two weeks. The second is at the end of April. There are still no plans to offer vaccines to children. So in effect it does really change our situation going forward.
As of tonight the full online school system will be turned off again. Hawklad goes back to trying to keep up with his classmates with whatever we can get our hands on. How well that works depends largely on the teachers and teacher assistants. Dependent on them finding the time to send class materials and work. Since September it kind of just about worked. Better in some classes than others.
I’m not entirely hopeful this time around. The teachers and assistants have to be involved in supervising the pupils doing Covid self tests. For a school with 900 pupils to do that twice a week is a massive task. Support for Hawklad is likely to be very limited going forward.
It’s going to be a challenging period for everyone going forward.
What a lovely sunset.
Last night Hawklad reminded me that this Sunday last year was when we first talked isolating. I remember it quite well. A Sunday evening. I was sorting out the school bags for Monday morning. Hawklad came into the room and asked how did we know that this new virus wasn’t already in school. How did we know the bus was virus free. Should we stay off school until it passes. I tried to reassure him but I could sense his anxiety. I emailed the school to let them know that he was anxious. When he’s anxious it can throw off his ability to sit still and concentrate.
He did get to school the next day but not by school bus. He asked to be driven in. A few days later school proved too much for him and our family lockdown started. Soon the world changed.
It’s odd looking back. Its hard to believe that we have been isolating for nearly a year now. I wouldn’t have dreamed that I could have coped with that much isolation fit that long. A world suddenly constricted to our garden and house.
But we have…….
We can do this.
I don’t know why but as soon as I saw our morning sky I immediately thought of two opposing medieval armies preparing for battle. Just waiting for the mist to lift before they crash into each other.
Our area has had so many bloody battles dating back to Viking times. Who is to say that these very fields have not witnessed that grim sight.
Today’s grim sight was restricted to this unshaven, unkempt Bloke with zero fashion sense leaning against the fence. Coffee cup in hand, exposing his partly covered hairy legs to potentially the ghosts of the past. I guess in years gone by I would have opted for the kilt look. Need to get the air onto those ‘airy knees.
Mist is an apt way of describing my current thinking this morning. After a year of lockdown (now just two weeks short of that anniversary), I still can’t see the way forward. No nearer establishing when (or if) Hawklad will feel able to return to the outside world. Is it school or permanent homeschooling. Will my job survive. When will be our next holiday or excursion. Are my dreams on hold or permanently cancelled. Will I ever get to where my heart desperately wants to go. Is that it for concerts or football for us. When will we see friends and family. Is that it for hugs. Is the world still out there. Has anyone even noticed that we aren’t part of the crowds anymore.
A pandemic year and I still can’t answer those questions.
Mind and hope mist.
That is not a great feel.
It’s horrid weather today so let’s go back a few weeks. That’s better.
I heard someone from the Government brush off a parent talking about her daughters genuine fears and phobias about returning to school. Her daughter doesn’t think her classroom and school is safe enough. From the sound of it her daughter is in a similar place to Hawklad. Really struggling. The interviewer cut off the parent saying that she was in the minority and the vast majority would see things much more positively. The message from the Government followed instantly. People and kids who had concerns and fears needed to listen to the majority. Schools are completely safe, just get on with it. Parents have an obligation to send their children into schools when they open.
Meanwhile back here the NHS Psychologist is just at the early stages of a treatment programme to try and help with Hawklad’s deep seated anxieties. No guarantee that the programme will ever work. This week’s task is for Hawklad to try and stand in the front garden for 1 minute. The message is don’t worry if you can’t do that. Even a few seconds will be a massive leap of faith. And if he can’t do it at all then we can try another week. Pushing people with significant fears and ingrained anxieties can do so much harm to their long term mental health.
The Government and the ‘Majority’ are not trained mental health practitioners. They have absolutely no idea what some people are going through. On this issue they can stand out in the rain and whistle for all I care.
It looks like Yorkshire. It feels like Yorkshire. Its moody, dark, windy and cold. It is Yorkshire. Some places are perfect for growing olives, oranges, pineapples and coconuts. The climate in some places are just perfect for fantastic wine. Here in Yorkshire the climate is perfect for Rhubard…..says it all doesn’t it.
How difficult can a Science test be.
The answer – a nightmare.
40 minutes to complete 20 questions. Sounds easy. Questions about Pressure, Force, Springs and Moments. Not easy for Hawklad but seemed to get there. Worked stuff out in his head. But that’s only part the story. The real story is trying to get the answers to the teacher. He can answer the questions in his head but then struggles to record them. It’s such an effort to type or write for him that he losses the answers he has in his mind. He can confuse himself or just forget. Even trying to write and type as he goes along doesn’t work, it seems to disrupt his thinking. Ends up going round in circles.
The other option is a scribe. But talking out aloud makes him nervous and makes it harder for him to answer correctly. Often what he describes is different to the answer he has visualised.
How frustrating must that be.
Could I argue that this was a Golden Eagle catching fish over a mountain lined lake. I could but others might have a different view. If we don’t listen then we often get the wrong answer….
I was listening to a member of the Government being interviewed about schools on the BBC. The interviewer listened politely to the answers agreeing with everything that was said. Never asking for the evidence or questioning the view. All very friendly and very smily. Then a scientist was interviewed with a differing view. The interview was very different. The scientist was constantly interrupted, never allowed to answer fully. Often basically accused of being biased. Part of the problem. A very hostile interview.
That’s the problem we are not allowed to have a balanced open discussion anymore. It’s very much you are with us or against us. It’s not just Covid, it’s everything. I heard a leading Government MP say that any Firm that doesn’t support Brexit fully would be penalised.
So where are we with schools. They largely remain shut until the 8th March. Next week our so called Leader will tell us the plan. There seems to be a media blitz telling parents that schools are perfectly safe. Children have to be in schools as no other options exist. Nothing to worry about. The only change needed is to get pupils to wear a mask in a few more shared areas but definitely not in classrooms. Parents will be issued with Covid test kits so they can test their family regularly. The evidence from Europe and here shows that schools don’t spread the pandemic at all. Children are getting infected only in households. Infection rates are falling. More people have been vaccinated. Doubting parents will be subjected to a Advertisement campaign to reassure them. Those still doubting will be warned about fines and penalties to if they fail to send their children back.
That’s one view….
There are other views.
- Respect individual children views. Some will be keen to return others will not feel safe. It’s a personal judgement about risk.
- People are being vaccinated but most only with one of the two required shots. This runs the risk of reduced effectiveness and virus resistant mutations.
- The vaccine varies on how much protection it provides to individuals, how long it is before the protection starts to tail off and how effective it is at stopping people spreading the virus.
- There are NO plans to vaccinate children. The Government believes they are a key way to develop herd immunity. A strategy which has little expert support.
- Comparing UK schools with many of the European ones misses a key point. UK classrooms are much more overcrowded with less opportunities for social distancing than European ones.
- Infection rates are falling but still are higher than under the first wave. The death rate is still daily well over 500 a day. So falling YES but no where near under control.
- The number of virus mutations being detected are rising rapidly.
- The virus is now spreading fastest amongst the young and under 18 age groups.
- Even with a lockdown and with schools only accepting a small number of pupils (essential worker children), Public Health England are still reporting that about 100 schools a week are still encountering pandemic outbreaks.
- Our Leader only a few weeks ago called schools completely safe and told parents to send their children into school. 8 hours later he was saying schools were Vectors for Transmission and had to be closed. Make your mind up….
- Children are getting serious long term Covid. They are being hospitalised.
- Children are being admitted to hospital with associated serious diseases which are linked to an initial mild Covid infection.
- The quick self administered tests which are going to be used are not particularly accurate or reliable. Only really effective as a guide not a determinate.
- Many scientists and experts are arguing for caution on school reopenings. For the foreseeable future they are arguing for investment in homeschooling to allow for more classroom space. This would also allow time for schools to implement change to permanently move away from overcrowded learning environments.
Different views but we are only supposed to hear one. Just maybe the best way going forward is to be open with what we know and what we don’t know. Let individual schools work with the local health services, parents and pupils. Develop local solutions that work the local circumstances. Give them the support to make long term changes. Provide an enhanced national home schooling resource pool. Then trust parents and children to make the right call for them. Surely that’s a better route out of this mess.
The snow has gone. The temporary lake is starting to shrink. Signs that Spring is on its way.
Another work call confirming that the work plans involving me are as empty as the tyres on my bike which hasn’t been used since 2019. Thats completely airless. Not going to loose any sleep over that. No point. Maybe next year. A quick scan of the new job situation indicates a job market that is as fiat as my last loaf of bread which actually reduced in size when it should have risen. It really is just a case of battening down the hatches until things pick up again.
In our case that is not a band thing.
Hawklads fears are still there. If anything a bit worse. Absolutely zero chance of him being able to cope in the outside world any time soon. Getting through the front door is too much at present for him. Even me venturing out into the front garden really spooked him. So that’s stopped. The Front Door has not been unlocked in days. Once a day I sneak out the back gate and feed the birds, check on the rust bucket car, put the rubbish into the bin and pick up any deliveries that are sat on the front step.
Our world has shrunk further. The house and the back garden now is all that’s left. So no work allows me the time to focus on Hawklad. Try to give him the support he needs. Try to give him a reasonable quality of life and as much fun as can be found.
Hopefully Spring will arrive and the garden will become more enticing. It will be nice to sit outside with a coffee without 25 layers on. But I will miss our lake…. miss the world.
I know it’s all gone but the field looks better for it….So let’s go back to just before the thaw.
I was sat in my car. It hadn’t moved in weeks so I thought I had better run the engine for a bit. Reverse it a few times up and down the our little drive. Make sure the brakes haven’t seized up. If I was sat for weeks my knees would definitely have stopped working. I was looking at the three peddles and scratching my head. I had forgotten which one was the clutch. After a few test presses I sussed them out again. Clearly driving doesn’t come naturally to me.
That’s probably very like parenting with me as well. I’m probably better at being the kid than the one apparently in charge.
Then a worrying thought. What if I’m getting this parenting lark completely wrong. What if I’m making things worse for a Hawklad. Who knows. I’ve never been assessed. It was easy when there was two parents. Someone would tell me if I was wrong. A quietly whispered ‘tell you what why don’t you go and cut the grass and I will do that’. But then that abruptly stopped in 2016. This summer it will be 5 years of me parenting solo. No checks. No assistance. No manual. Doing this all by myself. Over those years there were many times I would have definitely told myself to go outside and cut the grass.
What if I’ve got this wrong….
Would my partner have done it differently. Probably. We often politely disagreed. Even down to how to change a nappy. She wanted him to go to a different school. Was she right? She had a different view on the approach that should be taken with his Aspergers and Dyslexia. Have I been too laid back on the implementation of his Education and Health Care Plan. Have I done all I could for him. Have I missed something which would help him with his fears and phobias.
I guess the answer is that I will never know. All I can do is my best. Hope I get most things kinda right. Hope I don’t drop too many balls along the way. Maybe even find the time to cut the grass.
The thaw has set in. No more snowy sun roses this week, maybe not until next winter.
I wrote a few hours ago about how I was missing the snow when it’s gone. You only really miss those things that are special to you.
There’s a difference between missing something and worrying about something. The disappearing snow is also worrying me a little. During the national lockdown the snow helped create an impression of a really small available world. What we can see and touch is all that is available. We are not missing out on much.
But is the thawing snow a symbol of change?
Some Governments are keen to reopen and relax restrictions. Is that way too soon. Who knows. But the message that it will be soon open for everyone misses the point. It’s not going to be open for everyone. Anxieties and Fears don’t get fixed overnight. The vaccinations won’t have reached many people including the kids. Many will only have had one shot. We have rapidly changing mutations. Some will continue to wear masks others will ditch them.
The works will open for some.
For us the lockdown will continue. In a few months I will have had one of the two vaccine shots. So I will be partly covered but that’s not the point. Hawklad’s fears are actually rising. He knows that I and other vaccinated people can still pass the virus onto him. He knows that he won’t be getting and vaccine protection. He can see that children can get covid and the more severe long covid. He is fully aware of the associated serious disease that is affecting some children. He can knows that some people will drop their guard. Basically his fears are not going away. So our lockdown will continue.
So the disappearing snow kind of symbolises something else. A world is out there. It is opening again but not for us. It’s not a small available world anymore. It’s a big world again but one that we are locked out of. Beyond our reach. That worries me and makes me sad.
Sad to see the snow go.
But then another thought. A better thought. Other people, other families can hopefully start to enjoy these places again. To have adventures. Other young ones can have holidays again. Have more fun. Can be safe doing that. Memories can be born.
Maybe the snow going is a good thing.