So TV glamour aside – the reality of living with Autism in the family.
I ended the weekend totally exhausted. Went to work determined to leave it all behind me and concentrate on a major project which culminates tomorrow – when we retire two old websites and divert all the users to the newer current one. Tomorrow is going to be a late one.
First thing I get is a hitch in that process. Second – and before I get to look at that – another site we have has a major problem! It’s main functionality stopped completely.
Deep breath! Put aside the planned work for today – deal with this.
A phone call from the wife – Our youngest -the one with Autism – who has to face a long journey on a bus to get to school every day and has been struggling with it – has finally snapped. Just like we had been warning them – and asking them to change his transport arrangements – to no avail. He has flipped out and hurt other children. Now the bus company are refusing to take him anymore. Not even to bring him home.
So now we have an issue. I now have to get these jobs done quicker as I have to leave early to pick him up from school.
So bang – get one done. Bang get the other one done – need to get them tested and live.
Another phone call from the school.
Now – he has had a fall at school and had been rushed to A&E.
Got to get this fix live! Now! And leave!
Raced over to get him as my wife is in the hospital for heart cardiac rehab.
By the time I get him home and safe my heart is racing and chest is hurting so bad I think I might be joining her pretty soon!
I would say I can’t take many more days like this but this is becoming normal for us.
Oh for the easier days!
I am just thankful I have an understanding employer.
My eldest – aged 8 – came up to me today and proposed his idea for a new superhero, with a grin – he relayed it.
It’s a man who gets bitten by a radioactive man and gets all the powers of a man. It’s Man-Man!
That’s displaying quite sophisticated humour, I think.
I am not a big drinker, for a number of reasons. I couldn’t afford it! I can’t take it. I very rarely get the chance.
Well, I had the chance this weekend. And I needed it.
It’s been trying. My wife has been unwell, her heart condition being exacerbated by viruses and colds. We have money worries piling up and our youngest is struggling with his behaviour at school – we have been summoned! We suspect they have forgotten the fact that he has ASD!
So I had a works do – all expenses paid. I was only supposed to go out for a few – but you know – that third one always persuades you otherwise. Plus it was a bit of a celebration having passed my three-month probation in my new job.
So it turned into a full night. An epic night.
A very long hungover Saturday.
I have to say a big thank you to my wife who understood. It might be some time before I can enjoy something like that again. Despite how she was feeling she let me have that time. Even took the kids out the next day to spare me.
Now we have to face the next hurdles. A visit to the school. A trip to the hospital for her pre-operation checks, then waiting for the phone call.
In between, we are trying to squeeze in time for our eldest who is getting his time with us squeezed by all this. He wants to start clarinet lessons! That, I really want to nurture.
Somehow, strangely, against all expectations, a debauched Friday night has made me feel better able to face it all.
By Scott Bailey © 2016
The lonely tree
Stood atop the blasted hill
Barren branches snatching
Rays from a mist-shrouded sun
Every now and then
Upon an errant breeze
Flits a weary bird
Resting one more time
On its final flight
All around the roots
Dead birds and ash
Giving meagre succour
To the lonely tree
From that blood-soaked soil
This tree’s seed will rise
Green will conquer grey
But too late
For this final witness
Of our fall
In response to the daily prompt Temporary
Change is the only constant
One of my favourite quotes from one of my favourite books – Dune by Frank Herbert.
In times of stress and trouble, it helps to remember that all things pass, even the things that darken our days. So savour the moments that count, enjoy them.
My biggest problem is that while intellectually I accept that, try to live that, in my heart, I crave conformity and security. Safety and predictability.
A dangerous and seductive train of thought that I am finding harder and harder to resist. Getting old maybe?
Well, it’s time to shake things up. I will be starting a new job in a few weeks. Life is forcing changes on me whether I want it or not. Time to wake up, embrace the change and revel in the storms.
In response to the daily prompt Temporary
I have been quiet – nothing but my scheduled posts ticking away to keep the blog going.
There has been good reason. I just had the week from hell.
First, there was work. I have been feeling like crap but struggling to work only to get there and the stress levels have gone stratospheric. Everyone is feeling it and no-one – myself included is dealing with it very well – so no-one can support anyone else.
That alone would be fine – not feeling well didn’t help matters.
It was a short week. But not for good reasons really. Thursday and Friday we were stacked with Doctors, Hospital and School appointments.
For my wife – who has what could be a serious, life-changing heart condition developing. We have to now wait for more appointments and results on that one. For now, she can hardly walk up the stairs without being out of breath as she is not getting enough blood. – Though it may also be being affected by her asthma so we have to see which is the worse factor.
While we were there we took our eldest son to the doctors thinking he had tonsillitis again. The doctor – she must have some hunch – asked for a urine test. Three hours later they were on the phone telling to go to the hospital and get a blood test. So the next day was spent doing that – this involved me having to hold him down screaming and sobbing while they did it. It wasn’t painful but he has had some bad experiences with needles and hospitals before so was very freaked out about it. It is heartbreaking.
So there’s more waiting for results – we don’t really know why either.
In the middle all of that – literally – I had to squeeze in a job interview!
Just as all the appointments and visits were done – my wife and both my sons went down with what appears to be the norovirus. They have all been very very sick. I have been up to my elbows in – well you don’t want to know.
My brain has been fried, I have had very little sleep and I need a year off. Can someone arrange that? Please?
One tiny bit of good news today – I reached 1000 followers at last!
It’s been a hell of a week – hence a quiet one on here for me.
My wife went to a very emotional funeral to send off her Uncle. While My parents got to see the granddaughter they haven’t seen for nearly 10 years!
My wife also had an appointment about our youngest’s diagnosis of Autism. While I had excruciating physio on my frozen shoulder.
On top of that, server problems of the worst kind meant that I was working well beyond midnight for half the week.
The result being I have had very little time this week. No time to write, no time to take advantage and spread the word about the wonderful review I received for my book (see what I did there) – other than retweet all the retweets!
So the stats are down and so my energy levels.
The plus side has been that the kids have spent a lot of time this week with my brothers and their families. And they have enjoyed that a LOT!
I cannot thanks them enough for their support this week and in recent weeks. It has bonded our family even more I think. Even if it did mean Uncle Daniel getting dunked in the swimming pool a lot and being roped into Batman Games all day and Aunty Carol and Aunty Charlie falling in the sea!