Posted on by bereavedandbeingasingleparent · 32 Comments

Road

Yes it’s another one of those massive, multi lane Yorkshire motorways.

We are a couple of weeks into the start of trying to help Hawklad build bridges back towards the wider world again. It started with us taking the mad dog for a walk at night. Nighttime as it would be quiet with no other people out and about. Small steps in breaking out of walls that surround our little house and garden. The isolation which started 15 months ago.

We quickly realised that actually it’s always pretty quiet here, not just at night. So we started going for the walk a little earlier. Now nearer 7pm. Guess what. We still hardly see another soul. Currently that’s perfect for Hawklad. Very rarely we see a farmer or another dog walker. When that happens Hawklad immediately turns on his heels and heads quickly home in the opposite direction.

The other thing is that Hawklad doesn’t like to walk on the path. Just doesn’t feel comfortable doing that. So we walk on the road. Our massive and very busy road….

Well you can see just how big our road is. Just how busy it really is can be gauged on one fact. We have been walking every night straight down the middle of the road. Not once have we encountered a vehicle. The road is ours….

That’s such a cool feel. Such a cool feel for both of us. I can concentrate fully on talking and in the quiet bits, on dreaming.

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Fence

Which side of the fence is best?

I had a call with Hawklads new health specialist. She will (pesky pandemic dependent) come out to see him for the first time in January. Continuity is so important for someone on the spectrum. It takes time to earn trust and confidence. Those bridges when they come down are slow to be rebuilt. Having had a wonderful health lead for three years we are now in a spell of meet one, quickly see one disappear. Fingers crossed this time.

It’s clear what the medical opinion still is. Any meaningful progress is extremely unlikely until this virus is well under control. When it’s clear that the vaccine which has been administered works effectively and does protect. Only then can any progress be realistically contemplated. Prepare to bunker down for 2021. 2022 might be the first gateway to a more open life for our little family. I also have to accept the risk that progress does not happen for Hawklad. Bridges are not built. This is the new world.

I remain clear. It’s Hawklads life. He makes the call. I will support which ever route he goes down.

So will he return to school in January? Most likely NO. Will he make it back before the end of the school year in July. Probably NO. Will he start the new school year in September. Definitely no guarantee.

It feels like we are in one side of a fence. The side that feels limited but safe. The other side of the fence opens up the world, broadens his horizons but…….

Posted on by bereavedandbeingasingleparent · 64 Comments

Building Bridges

A fine northern river. Many bridges connecting both sides of the city. Without those bridges and the city is split asunder.

Son do you want to go out for a blueberry ice cream?

“No it’s ok Dad.”

Son do you want to go and visit your Auntie. We can keep 2m apart when we get there?

“Not this week.”

How about visiting your favourite toy shop. It’s open?

“No I’ve got plenty of stuff to do.”

What about going to that remote walk and going to see that Neolithic site. We can stop off and get one of your favourite pizzas?

“No, maybe some other time.”

These are some of his favourite things. In 2019 the slightest mention of any of these would have sent our Son running towards the car. That’s all changed now. He has most definitely burnt his bridges with the world. He is also in no rush to start to build them again. Many people will be in the same boat. We have a community split asunder. Split in more ways than this….

I understand someone from the so called Government was not happy with pupils been kept off school. Kids should be forced back to schools as it will be good for them. They don’t have the slightest idea about Mental Health awareness. Good job we are ignoring what they say.

It’s going to be a long road back for some. Certainly for our Son. It’s pointless putting a timescale on it. It will happen when it happens. Until then the bridges will remain down and we make the best of it. I’m looking out across the next door farm and into the distance. We are so blessed. We certainly can make this work for us. No rush for bridges here.

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No Rose Show yet

No jokes today. No script. Let’s just see where this takes me.

It’s the very early hours. It’s my partners birthday. Once I’ve finished I will close the iPad for today and hopefully I will see you tomorrow.

These are strange times for all of us. But to be fair it’s been a strange time for our little family since 2016. That’s the year the world stopped and changed for us forever. Those six weeks from hell. We lost my mum and our Son’s beloved little nan on the first day of that period. That day started as a fun birthday for me and finished in heartache. Almost straight after the funeral my partner wasn’t feeling great and went into hospital overnight for routine tests. The next day having come to pick her up, I was taken to one side by the Doctor to tell me that things where bleak. She only had a 5% chance of surviving the month. Zero chance of making it to Christmas. She was deteriorating rapidly and she wasn’t really conscious. The following conversation with an 8 year old will haunt me forever.

She never fully regained consciousness. We had no more conversations. I can’t even remember the last one we had. Three weeks later I was telling the 8 year old his mum was dead. 2016 and those six weeks from hell.

This day in 2016 I had just given my partner a plant, a Yorkshire White Rose. She had always wanted one. I wish I had bought it so many years earlier so she could have enjoyed it. Since then it has always bloomed in time for her birthday. Not this year. The bad winter has set things back. It’s a few weeks behind schedule. But it will get there. It’s a hardy soul. It feels like one of the few life bridges which didn’t break in 2016. A link to a world now gone but certainly not forgotten.

So now I will focus on our Son. Yes there might be a few tears but hopefully if I do my job right then there will also be smiles. Let’s be thankful for those wonderful times. Let’s remember those other times when the world changed. Changed for the better. Our first date. Our first night in the new house. Finding out those pregnancy results. Holding our baby. Our first family family holiday.

Wonderful, loving times.

So that’s it. Take care and remember that this is still a wonderful world. No more words today. See you tomorrow.

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Ever shrinking world

A photograph from our garden. Just five paces from the door. Part of Son’s world.

Our Son really struggles with health related anxieties. I remember the first pamphlet his Doctor handed to us about Aspergers all those years ago – second bullet point – may encounter obsessive fears over health and hygiene. For our Son they were real, life altering fears. Then in quick succession he lost his mum and both grannies. The fears became even more scary and real to him.

In the early party of his Aspergers life he was under the care of a wonderful Clinical Psychologist. She slowly helped but then she retired (and was never replaced due to the decisions backed by many of those in our current Government). His care became a real hotchpotch which achieved very little. Then we were so lucky. Son’s case landed on the desk of a young nurse health counsellor. Since then she has been the only constant through his care. Now because of Government cut backs, she is the only specialist help he gets. Although not an Autism expert she has patiently worked with him and delivered real benefits.

His fears became manageable.

Due to our Governments continued running down of the NHS, her workload has become ridiculous. She just can’t spend the time she needs to with him. But she does what she can. She still cares.

Then 2020 hit. Is it really only 4 months old…….

His fears have gone off the chart. Can you blame him. The worlds gone potty. Everything is up in the air and showing no sign of settling down. Because of the new clinical rules his wonderful health counsellor is not allowed to see him until after the crisis has eased. Being realistic that’s not going to be until the back end of the year at the earliest. So he’s started burning his bridges.

Bridges is a theme I am sure I will come back to over the coming weeks. The world of autism and the big bad world don’t naturally coexist. They are often separate. Links and bridges need to be built. Unfortunately the big bad world is not interested in developing links. It’s been up to our Son to try and build the bridges. That’s allowed him to enter the big bad world. Those links have never been particularly strong. NOW HE HAS BURNED THOSE BRIDGES. The outside world is just too scary and full of dangers. He has bunkered down to his house, his back garden, his world.

The thing is that when things start to improve again. And they eventually will. The big bad world will make no effort to rebuild those bridges again. One lone nurse counsellor will try. I will try. Sadly, I’m not entirely convinced Son will make much of an effort this time. Maybe in the future he will but it will take time. In the meantime his world has shrunk.

Posted on by bereavedandbeingasingleparent · 17 Comments

Bridges

Sunday seems such a long time ago. I just love the quayside area of Newcastle. Yes it’s built up. Some of the architecture is 18th century housing modern wine bars, restaurants, fast food joints and pubs. But it just seems to work and dovetail together.

But the highlight for me are the bridges over the River Tyne. All so different and just stunning.

Too often people look towards the famous Tyne Bridge and forget to look in the other direction.

Son was really brave and made it into the football stadium. He enjoyed the full Mr Men display from his dad. He even got animated with the pompous and bumbling referee (without prompting). For anyone who follows English Football – Mike Dean is infamous. Yes it ended up with my team losing again but that misses the point. It was one of those days where our son ventured into a world which is not his and rather enjoyed it.