By Scott Bailey © 2016
Tiny, warm, fragile
Fingers tightly holding mine
Tiny, warm, fragile
Fingers tightly holding mine
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.
It’s been a strange week. I have taken some time off. Partly because the kids are on half term. Partly because a week today I start my new job so not sure when I will next be able to take time off for a while. Partly because we are still reeling a bit from the news that my wife is facing some serious surgery. Finally, because our youngest, having been diagnosed with ASD, and the mainstream school he was at being unable to cope – he has changed schools and went for his first day there today. So We have had to support him in this – and his brother who now has to cope with the fact that his little brother won’t be at school with him.
For someone with ASD it had the potential for disaster. He has had so much change in his life already, now he has been taken away from all the friends he made at school and has to face a long journey on a minibus with strangers to go to a much larger – but admittedly better – school. He managed admirably on his first day. Time will tell what the effects will really be. At least he will get proper attention now. He has gone from a class or 29 to a class of 6! With 4 teachers!
But all that’s just life. There were some oddities during this time off.
The first was late one night when we awoke in the middle of the night to an awful racket outside our window. It was a bird giving an alarm call and going totally mental. We looked out the window and I caught a glimpse of a cat slinking away with a dead bird in its mouth. I feared that it had got one of the noisy bird’s chicks. My wife – who can’t stand to see an ant hurt – raced out in her nightie to try to find the cat – all in vain. But the bird was still making a racket. So Rachel turfed your’s truly out of bed to go and take a look. After hunting around and finding nothing for ages I finally discovered another cat lurking in the shadows. After shooing it away the bird was finally silent. All kind of weird but ever since every time I go out the front door the same bird flies down to a nearby fence and sings at me. Rachel is convinced it is saying thanks for trying to help.
We must have weird wildlife around here as it gets stranger. A few days later while cycling back from the park with the kids, we saw that one of our neighbours was giving away a mini trampoline. One of those with a bar to hold on to – for toddlers really. We snapped it up. Our youngest loves nothing more than to bounce. On beds, on my back – anywhere! Well, that night we started to prepare our living room for some DIY (painting). This – against my protests – turned into actually doing the painting and went on to 3am! Once we finally got to a stopping point I went out into the garden to put some stuff away in our shed to find – I swear this is true – our resident frog jumping on the trampoline!
The frog – actually a whole family – appeared a few years ago and can be seen quite often in the garden at night. This is especially odd as we don’t have a pond! Nor do any of our immediate neighbours!
I just wish I had it on camera.
Oh well, back to work tomorrow. Three more days then a job of ten years comes to an end. Will be very strange.
Putting our youngest to bed tonight I pulled off his socks to find his feet lined with sellotape?
I asked him what that was all about. He rolled his eyes and sighed.
“So I can be spiderman, Daddy!”
Of course. Obvious.
There is a small group of people
I do not know them
But they watched my tears
As I watched him die
And they carry that moment
In their hearts
They find it strengthens them
Like a scar
Or a broken bone
It does not me
You know what they say – hopefully there’ something in it as I have been a bit quiet on here lately. Work has been hectic and have been doing a lot of late nights.
This is partly due to trying to get everything done before this coming week – as we are off on our holidays!
So don’t expect too much from me for a while longer 🙂
We had a lovely relaxing time this weekend. Saturday was courtesy of one of Alexander’s school friends birthday party held at a local farm attraction – which included a playground and a miniature train. Perfect! We could sit back and let them have fun.
Sunday was a combination of a walk along the coast and the local Transport festival and fun fair!
Here’s a few pics.
First of all – many thanks for all the birthday wishes – this is for my friends and family reading this via Facebook. I haven’t had the time to respond. It has been a very very stressful week at work with all kinds of stuff going on from resignations to shareholder meetings to urgent product development and website updates. I have been totally snowed under and stressed out so have neglected everything else in life. On top of that I have had the heaviest head cold ever!
So now taking a deep breath – before it all begins again.
I have to thank my lovely wife too – for putting up with me during these periods. I have been grumpy to say the least.
The other person I have to thank is my eldest son as he has indirectly kept my spirits buoyed. Lately he had really got into Minecraft. and he watched YouTube videos of other people playing them and other games even more. He stumbled on one of a skating game where the people playing were not actually very good and it ended up being more about how much carnage they could cause by falling off.
While I was stressed out working from home in the evenings while dealing with a number of issues and pressures – it was a magical lift to the spirits to hear him in the background laughing his head off at their antics. Real belly laughs. There’s no better tonic.
So this weekend, I will try an relax and get back to some writing!
In response to The Daily Post’s writing prompt: “Plead the Fifth.”
The question I find hard to answer – How many kids have you had. I have two – one by birth – one adopted. But we have had three – and whenever I say two it feels like we are betraying the memory of the one that was with us so briefly. Yet if you say three – that leads to many complicated conversations.
I have to add Alexander considers he has three brother’s as he also counts the one we lost at 7 weeks. In my mind we never has that one – we never saw him but I do see his point.
It’s a question that will probably never have a proper answer.
In response to The Daily Post’s writing prompt: “A Moment in Time.”
From paper to cheek
Paint is slapped with joyful glee
Release the zombie!
For some reason WordPress won’t let me re-blog tonight!
So am posting the text of the original here:
I was working though my old blog articles, gathering together all my old poems from the Year long poem a day challenge for publication – when I came across this. Alexander was only about three at the time – he was bright and cheeky already.
Alexander got reprimanded a little at nursery today. When told to do something he delegated it to two other children. I say leadership qualities!
Then tonight he wanted to watch a DVD. For the sake of my sanity I forbade another Scooby-Doo. So he thought about it and then said.
“What I really think I would like to watch is something that has two men. Two ladies. And a dog. And they go around solving mysteries.”
Mmmmm. So that narrows the options then.
We settled on How to train your dragon.
So it seems the moment I signed up for NaNoWriMo the pressure from all sides of my life takes off like a rocket.
Work has become more and more stressful. To the point of the web site having major problems last thing Friday night. At this point I was so sick with stress I decided it would have to wait until Monday morning. I walked out and decided to try to forget everything for the weekend.
This was not easy, as I said work stress is building up and up, relentlessly. Getting tired of it now.
On top of that the pressure from our adoption is also growing – all the social workers and health visitors want a mass meeting with us – we are naturally stressing about this as we don’t know what it is about. The annoying this is that we feel we have made great strides in the last few weeks and the little one if definitely feeling settled, safe and his behaviour has improved dramatically. The problem is we don’t think they are seeing it.
And then there are financial strains, cars breaking down, things going wrong and family illnesses. All piling on and on.
So this weekend I though sod it all. Lets just concentrate on family time.
And we had a great time. On Saturday we took both boys to a local children’s centre and they had a great time. They found some bikes and played together lovely with them. Then Alexander went to one of his classmates birthday parties. It was in a cake shop, making cakes.
Although he could have stayed we decided that L would just cause chaos in such a small place with flour and eggs! So I took him down to the beach and we spent a great couple of hours together, the best behaved he has ever been. While Alexander had a great time making “Alien” fair cakes and eating marshmallows dipped in a chocolate fountain, L and I threw pebbles in the sea, raced the tide and sat an ate lollies while watching the boats. It was bliss.
On Sunday we went for a walk in the country side around the village. Again the kids were remarkably well-behaved, collecting leaves and twigs for a Halloween picture project mummy has planned.
I won’t say I wasn’t stressed – it was still there bubbling under but time with the kids and my wife has helped.
So despite all that – because of all that and to spite all that – I decided to plough ahead with NaNoWriMo. I uploaded the cover (see below) and synopsis. Using Scrivener I have made a very rough plan. Writing down some very rough scenes, mostly in order though a few may change. I think my next stage of planning will be to describe for each character how they change between each scene. So I get a little journey plan for each of them as a guide.
I still think there an extra dimension to my idea missing, but not going to worry about that at present. It will only be a first draft – I can add more to it later if I still think it needs it once i have finished.
Cold Sanctuary by Scott Bailey
Orphaned, wrenched from their home, can Gabriel look after his adopted brother? Can he find a voice to stand up for himself?
In an alien world, unwelcomed and lost, all they have is each other. They must endure a clash of cultures, adapting to a radically new life and dealing with deep-seated grief. Gabriel struggles to keep the promise to his parents to look after the brother he has waited for all his life whilst coming to terms with his new surroundings.
Can such a young mind take all the demands? And, when they are suddenly separated, can he find his brother again?
Their searches for answers, for each other and to fill the holes in their hearts leads them on paths of rebellion and revenge.
So those few who follow my blog (and despite nearly 500 followers I know only a few are regular followers) will have noticed a drastic drop in my output. Since finishing my year of a poem a day I have done very little since. This is despite my promise to myself to keep up the writing.
Well life always has its own designs on our plans. The old reason (excuse?) has been the lack of time. Its been a hard few months. We have been under a lot of pressure from all kinds of angles.
We are still trying to adjust to having a very full on two-year old join our family, and all the knock on effect of that. We love him dearly and would not change our decision but it is taking the wind out of our sails.
Talking it over the other day as we realised that one of the issues that has affected us in a surprising way was his age. When we signed up for adoption we, like many, were envisaging a baby. As you progress through the courses and the process it becomes clear that it is unrealistic, so we opened up our minds to a slightly older child. When it came to it, in our minds age was no longer an issue, and in some respects we could see an advantage in a two-year old. One of the driving forces behind our decision to have another child was as a companion for our oldest – who dearly wanted a brother or sister and had already been deprived of one already. A two-year old would be more ready to play and interact with him.
However the reality has hit us harder than we expected. When you have a baby – as daunting as it all seems, you get introduced to each challenge gradually. So when they are first-born, you have to learn how to feed, them comfort them, change their nappies etc. But their demands don’t go far beyond that – by the time new challenges come along you have just about mastered the first ones.
With adoption of a slightly older child, all the challenges come at once. Not only have you got to learn to change nappies but also how to get them to eat their dinner, deal with challenging behaviour and stop them escaping the push chair Houdini style and make their escape.
Now I hear you crying we don’t have to learn all that as we have already done it once. Well that’s true. But you have to get used to doing it all again, and its a bit of a shock to the system. I don’t envy people who are doing it for the first time.
On top of that, the support we have enjoyed in the past has slowly ebbed away. This is no fault of our support network, they have all had their own plan challenging life changes, and they all support us still in many ways. But the support of having someone there has fallen. For example – we haven’t had a night out together for over a year now. And the nights out alone can be counted on one hand. It takes its toll. On the one hand our sources of stress have bloomed while our outlets for it have wilted. It’s no one’s fault. Just one of those perfect storms of circumstances.
Throw in a few bouts of very bad illness, some natural disasters ( a flood and a maggot attack! Seriously!) and it all adds up.
And then there’s work. We are balancing on a knife’s edge of survival. We have run that knife’s edge for a few years now. It’s a situation of risk, where we could crash and burn or reap what could be ripe rewards. Those rewards draw ever closer but as they do the risk and the pressure increase. Due to my position a lot of the physical responsibility falls on me. No solely but were I to get something wrong it would tip the balance enough to crash it. We are all in that position at work really and after a few years of it, it is tiring. Many late nights home and sleepless nights worrying.
So that I hope is some sort of explanation as to the lack of output.
Two things further to say. Firstly – that all sounds like doom and gloom but it’s not. In all areas we are making progress. A few months ago we felt like we were drowning. A few weeks ago like we were treading water. Now – we are swimming strongly towards shore. It’s some way off – but we will get there.
Secondly. Many people would say that if I had a real passion for writing none of that would matter – that I would make the time to write. Maybe that IS the difference between a successful writer and an amateur. I do love writing – but I also love my wife and kids and I can’t put down my responsibilities to them for my passion. I think that would be selfish.
That said – I have decided to give myself a rather large kick up the arse in the writing department. I am going to try the nanowrimo challenge. (Maybe unofficially if it’s too late to sign up formally.) For those who don’t know it it’s National Novel Writing Month. The idea is to write a 50,000 word short novel in 30 days. (The official website is here http://nanowrimo.org/)
Now I have all the same everyday stresses and challenges but I thought – sod it! I am going to attempt it despite all that – because it is difficult not easy.
Trouble is I am fresh out of ideas! I mean I have loads – but ones I think need longer than 50,000 words.
If it comes to November the 1st and I have nothing still then I will attempt the technique of just starting writing anything and see where it goes. Not something I have ever done before, I usually have a plan, even if it’s very rough.
But in the meantime – if anyone has suggestions or prompts they would be welcome. Maybe a title? Or just a single word? Perhaps a concept to explore? I like combining two disparate concepts into stories, that normally enlivens things. So maybe if I get enough separate ideas I will combine a few of them.
So wish me luck! I need a lay down now to think 🙂
So we have just had one of the wettest weekends we have seen for ages – and of course it was a bank holiday. But we were determined to have fun and relax. Especially after I had a day of total crisis at work – the stress after-shocks of which I am still feeling.
Anyway, we still had our days out. Firstly we took the boys for along the river in Sandwich. Alexander had the rare chance to get on his scooter and scoot free. They both loved it. Unfortunately the fun was cut short when Alexander got badly stung by a stinging nettle. It only brushed him but his whole arm blistered – leading us to wonder if he has an allergy to then? Thankfully it went down again very quickly.
The next day we went to a steam rally. This was a mix of old steam engines, vintage cars and – the only thing that interested the boys – fun fair rides. We were treated to the sight of Alexander and his little brother enjoying something together for once. L just looked up at him with a look of sheer pleasure and joy as they went around and around on the mini roundabout.
Maybe I am getting old but after paying to get in, paying for three or four rides and having a hot dog each for dinner we burnt through £50! What happened to cheap days out?
Then it chucked it down – we got out just in time. So we went around to visit Nanny Jean and Grandad Maurice. This was L’s first visit to any of our relatives – most have now met him but at our house. Nanny has a new large tropical fish tank which they were both entranced by.
The forecast for the next day was again for heavy rain. Once again were up early – relatively – and ready to go. I found us something to do but I knew if I said what it was it was unlikely to appeal to Rachel. So I declared it a mystery tour. I reasoned that the best place in the abysmal weather would be underground. So we went to Chislehurst Caves. And we had a fantastic time there – reminded us of our Holiday at Wookey Hole a few years ago. L was wide-eyed with wonder all the way through and Alexander thought it was a great adventure.
So it was back to work today and back to reality. Now have the extra project of seeking out a new hosting partner for our web app. The day was further spoilt by the loss of one of Alexander’s goldfish – Goldie. He was very brave about it, Helped me fish her out and bury her. He insisted he wanted a “cemerony” and made up his own prayer – which went like this.
“Oh God! My goldfish is dead. Amen!”
Short and to the point I suppose. I think we will get the reverberations of this in a few days when it sinks in more.
But overall it was a good weekend.
I think I have broken my toe
But I am just too tired to know
Stubbed it on a childproof gate
Too tired to see it until too late
But the pain and the weariness melt away
Into warmth when you hear them say
Dadda and they give you a smile
That gives you the strength for the next mile
Two men wake
Two men go to work
Kiss their children goodbye
Earn their wages
Love their children
Make love to their wives
One man sends the other
A bomb in a package
Nothing between these men
But a thin fence
Dressed up as ideology
As fight against injustice
But it is nothing
But the empty
Of little men
Rising up and crashing down
On the cold, dark northern sea
Through hail and thunder, rain and show
The dark behind we flee
Filled with fear and hunger
From their lands bereft
They gorged their souls on anger
Till nothing else was left
They crashed upon the naked shores
Like children of the thunder
And every wall they came across
The smashed and tore asunder
The burnt the words of holy men
Carved scars into the nation
But also left their words and ways
While singing their elation
Some stayed in the conquered lands
Creating yet more divides
Their echoes ring across the years
In our veins their blood resides
When did it become real and thereby lay you open to its impact?
Personally, I cannot remember. There was no defining moment of clarity that is salient in my memories. It must have come in slow parcels of cognition until it formed a picture I could comprehend.
Or maybe I still don’t understand it.
Growing up it was never real. I lost aunts and uncles, all my grandparents – but by the time this happened I had gained enough knowledge to know what was happening, and to be able to deal with it.
I ask the question as we have a four year old who is struggling with the question. Who lost his brother at three. How can so young a mind come to terms with this? Most of us have far more time to prepare for such events.
He is missing his brother immensely. He wants him back. He said to mummy that if we asked Jesus – “who lives in Bethlehem” – to bring him back. Mummy said this was not possible as much as we wanted to. Alexander has issue with things not being possible – perhaps a good trait for his later life. He had obviously been thinking this through a lot as he already had his answer ready.
“You go to the pound shop mummy, buy a lamp, rub it so the genie will come out. The genie can ring up Jesus and ask him!”
Of course – why didn’t we think of that…
But it roubles him deeper now. He has come to understand that we all die, and now he is frightened that we are going to die and leave him. We try to explain to him that this won’t happen for many years and he will be all grown up by then. He said to Mummy that is she died Daddy would cry very hard and he would not be able to get a wife! He know’s that Aunty Carol likes him but he is not sure he wants to marry her. (So you’re safe Uncle Daniel!)
He hasn’t quite got the difference between wife and mother yet.
On the positive side – he has a long time to get to grips with this and at least he is showing the intelligence and imagination to question and explore his feelings – and feels safe and happy to do so with us.