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Living with Luke 85

Ever been to the beach and built a sandcastle? Like a really good sandcastle, with turrets and battlements? Then dig a moat around the outside for further fortification and even had a drawbridge – down, of course. There’s only so much sand can actually do.

Ever worked really hard on the sandcastle and the time just flew past and before you knew it, you realised that the tide was coming in? And so, what you did was build a wall in front of the sandcastle in a (vain) effort to hold back the inevitable? And then ANOTHER wall in front of the first, figuring that the sea would spend so much time trying to get past the first wall and then the second one that it would eventually give up, recede back to whence it came, figurative tail between its figurative legs, conceding that that was one hell of a well-defended castle?

The reality of course, is that the sea gradually erodes the walls and the castle until it eventually collapses, is overwhelmed and destroyed. It’s inevitable and unstoppable and no matter how hard you try, nothing lasts forever.

Ok, well now read the above and replace sandcastle with body/weight training/fitness and the walls as, well…walls and the sea as time.

And the little flag you planted in one of the turrets as Tiddles. And you are trying to hold back the tide in order to protect him for as long as possible. Even if that flag stands in a tiny mound of sand, it’s still standing.

Welcome to my world as a Dad of an autistic boy.

Because no matter how much time and tide beat me, wear me down, erode my defences, I HAVE to keep holding him close. No matter how small and weak I may get, I HAVE to keep going. For him.

I joke that I have to live until I’m 150, just to take care of him always. But it’s not really a joke. It’s more like a promise.

And Life may get so painful at times that I may wish for that pain to end, but I know that, in my heart of hearts, it can’t and it never will whilst he is alive.

This is my future and as I approach the first third of projected life span, it is one I have accepted.

So I build my castle and I fortify it as best I can. I’m aware of the tide coming in and the walls I have put up to hide behind, always thinking of the little flag fluttering away without a care in the world.

I’m the dad of an autistic boy. He’s my beautiful flag.

And I need to live one day longer than him so I can protect him.

Always.

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Living with Luke 84

I don’t sleep very well. I never have done really, not since a very young age.

Actually, I used to sleep, just not for very long. I used to read a lot when I was a boy. My pillow had several books under it which I would be reading. How I ever managed to sleep at all is a wonder. But I loved to read before bed. It would help me ‘relax my brain’ I think was what the family doctor said, when my mum asked him about my nocturnal reading.

These days, I have a very relaxed brain, which is a polite way of saying thick. But I still don’t sleep for long, and now I don’t sleep very well.

And the reason for this can be summed up in one word…

Tiddles.

Tiddles’ sleep patterns are waaaay out of sync with everyone else’s. We used to put him to bed around 10 and he’d USUALLY be asleep by about 11 after listening/watching his iPod.

But that was when he was a boy.

He’s 19 now-technically an adult, a man. He can, technically, go to bed whenever he likes…technically.

We still put him to bed at around 11pm, because that is usually when we are going to bed. Long are the days when I stayed up past midnight and got up at 5.30am every morning.

And then it begins…

For a while, he would get up again and go and sit on the toilet for an hour. But that seems to have stopped – thankfully – so we do start off getting straight to sleep, even if he doesn’t.

And he usually doesn’t. He tends to lie awake, propped up on his two flat-as-pancake pillows, with his iPod AND his iPad on – 2 different things playing. And I will get up, the first of two, three, or sometimes four times in the night to turn one or other or both of them down to a level where I can’t hear them in what I laughably call ‘sleep’.

And I say laughably, because these days it’s more like periods of trying to find a comfortable position, interspersed with brief moments of shut eye, coupled with getting up and turning down an iPad at 2.30 in the morning.

And then…AND THEN, he sleeps until gone 10am sometimes and has the bloody nerve to look at me as if I’VE disturbed HIM!

Sleep. It’s very overrated.

But I’ve decide that if I have one done, then my new t-shirt will feature this…

Autism Parents…We’re Always tired…

Living with Luke 83

Tiddles came down the stairs the other night. Looked in the kitchen, then the conservatory and then the office before coming into the living room.

‘Where’s Mum?’ He asked.

‘She’s rehearsing, she’ll be back soon.’ I replied.

‘Where’s Mum?’ He asked again.

‘She’s rehearsing, she’ll be back soon.’ I replied again.

‘Where’s Mum?’ He said for a third time.

‘She’s rehearsing, she’ll be back soon.’ I repeated, patiently.

‘Where’s Mum?’ He asked.

‘She’s rehearsing, she’ll be back soon.’ I said once more.

Now if that exchange has been a bit boring to read, then consider this. The time it took to actually read that was the time it took for the whole conversation between us…about 20-30 seconds. And it’s probably the longest conversation we’ve ever had between us.

Any ‘normal’ child, having asked the same question even twice, would probably have been told to go and play and not to keep asking the same question over and again, especially 10 seconds after they asked the first time. But, as we all know, Tiddles – and children like him (I know he’s 19, but as I keep saying, he’ll always be my little boy…) don’t really ask the typical questions that children do…Why is the sky blue? Why is the grass green? How is Teresa May still Prime Minister?…That sort of thing…

So to have him come and sit and ask questions…ok, it was the SAME question, four times…was something rare and although the subject matter was again, ‘why are you here and Mum isn’t? I was happy to answer this over and over, exactly the same way and as many times as it needed to be.

Why?

Well…why not?

The occasion was a one off. It’s not happened before or since. He’s asked where his Mum is many times but never over and over like that. He may never ask like that again, but if he ever does, I’ll do exactly the same again for him.

The question hurts. It’s a rejection because he’s not asking out of interest like The Eldest Child would ask, he’s asking because he wants her there and not me. He wants Mum and he’ll kick off if he knows she’s going out without him, so she has to sneak out whenever she does go out.

I barely get a wave when I go, but that’s how it has always been.

So the question hurts, but he asked me, talked to me, 4 times! I would’ve answered it twice as many if I’d had to and wouldn’t have been bored, or told him to go away and to stop asking.

There’s so much in our lives that we take for granted especially where our children – if you have children – are concerned. Most of all is time. We need to grab the moments that are seemingly meaningless at the time and look back and think, ‘oh yeah…’ because, as I said, Tiddles hasn’t ever done that before, or since and he may never, ever do that again for the rest of his life.

But he did do it.

Just the once.

And I spent those 30 seconds having a conversation with my youngest son.

Merry Christmas.

Living with Luke 82

I started writing this on Sunday, which happened to be Tiddles’ 19th birthday.

To my beautiful boy, I wish you…

A life free from pain,

A life free of heartache,

That the only thing to upset you is running out of soup.

I wish you a life filled with joy, and laughter. When the simplest things make you giggle uncontrollably.

I wish for you to carry on singing, wherever that may be…in the shower, the toilet, the supermarket or the doctors surgery.

I wish that you will stay innocent of all the hatred, prejudice and intolerance of this world, but that you’ll also see the good, the things that make you happy.

I wish for you steam trains, endless DVDs, holidays by the sea, train sets and Christmas lists ticked off.

I wish that you’ll stay healthy and that no ailment will ever stop you doing whatever it is you want to do.

I wish for you something that makes you complete, whatever that is. Whatever that one thing that fulfills you in your life, I wish that for you.

However…

I also wish that you’d stop hitting me. That you would stop seeming to hate me. To stop shouting at me whenever I speak to you. For you to not hide away from me.

I wish that I wasn’t your punchbag…but I am.

I wish that you could know deep down how much I love you, and despite all the smacks, that will never change.

I wish I was the Dad I wanted to be…but I’m not.

Instead I’m the Dad that you need. Sometimes sad, sometimes happy. Endlessly loyal. And wishing that, just once, you could see this.

But most of all, I wish you many more birthdays, my quiet prince. I wish for you cake (diary free). I wish for you presents.

I wish for you my love.

Living with Luke 81

I read a post today which was entitled ‘Rules for my unborn son.’ It is a list of about 30 ‘rules’ written by a dad to his son in how he should conduct himself. Quite lovely, some of them were things like,

“There are lots of ways to get into a pool. The stairs ain’t one of them.” And,

“Give credit. Take the blame.”

(If you want to see the full list, then here’s the link https://aaronconrad.com/2017/08/23/rules-for-my-son-2/ )

But it got me thinking about rules for special needs kids, specifically Tiddles, but i suppose they could be for children and young adults on the spectrum across the board.

So…with that in mind, and with a nod to ‘Life lessons from Living with Luke’, I present…

Rules for Tiddles.

1. Bedtime is when you shut your eyes. No matter how much we try to get you to bed earlier, you sleep when you’re tired.

2. If you want to confound us, do something empathetic. We might think that you don’t care so do some thing that makes us think again.

3. Learn foreign languages, like French, Welsh, Polish, Swedish and Dutch, even though you have no intention of ever using them in public.

4. If someone is standing at the door, and they ask you if you can open the door, tell them ‘yes’ you can.

5. IPod not working, because the internet has gone down? Hit it and shout ‘It’s fixed’ many times until it is.

6. If anything comes in the post, assume it’s yours. Even when it isn’t DVD shaped and from Amazon. 

7. Meals appear like magic. As do cakes, soup, drinks and underwear.

8. When mummy and the other adult are watching tv in the evening, that’s the time to run round and round the house singing the theme tune from ‘Lucky Luke’. No other time will do.

9. Try to break your brand new headphones within a day of getting them. Swinging them round your fingers usually does the trick. A new pair will appear, again by magic and then you can try to break your previous record.

10. Become obsessed with one particular 20 second scene in any Disney/Thomas/Tintin/Toy Story/Muppets film and play it on repeat for the rest of the day. 

11. Shout ‘achoo’ when somebody sneezes, or better still when they’re clearing their throats.

12. Want to disagree with somebody? Just repeat what they say to you, but preface it with ‘No’. E.g. “Where are your headphones?” To which you reply, “No wheres your headphones.” If somebody says “Shush”, you can reply “No shush.”

13. Want something to eat or drink in the evening? Take your headphones out of your iPad, turn it up loud and then come and sit with mummy and the other adult whilst they’re watching tv and wait until they make you something.

14. Saying hello and goodbye to relatives IS a chore, and should be counted towards getting a new DVD/train/iTunes video.

15. If somebody asks you to do something,  stare at them until they go away.

16. Packing your DVD’s for your August holiday is a perfectly acceptable thing to do in January.

17. Likewise, watching and singing all things Christmas is perfectly acceptable in late August.

18. If a parcel arrives, open the door, take the parcel and then slam the door in the delivery person’s face.

19. If music is being played and it’s interfering with your repeat of whatever you’re watching on your iPad, then just turn off the music.


20. But above all, never follow anyone elses rules.

Living with Luke 80

Tiddles is happy. Tiddles lives in Narnia, “his own private wonderland, where everything is perfect for him”.
But I’m not part of his happiness. I am somebody to deal with in order to get the things that he wants, and what he wants are food, DVD’s, things from iTunes, trains and the occasional gluten, wheat and dairy free chocolate rice milk. Oh, and somebody to clean his bottom – but we won’t dwell on that.

And that makes me sad. 

More, it sometimes physically upsets me inside. To be rejected by your child, one of the most important things/people in your life, can ACTUALLY hurt you, stress you, cause you pain.

But…

To know that he is happy, safe, looked after, without a care in the world, except where the next things above are coming from – including the personal hygiene,  but we won’t dwell on that…

That makes me happy.

Happy in the sense that I am here to provide those services to him. Understand I don’t go around with a big goofy grin on my face, especially when he shouts downstairs that he’s finished on the toilet, but we won’t dwell on that.

He needs me. I know that I am not the only person that does things for him, but for all intents and purposes, for all the rejection, heartache, pain – both physical and mental – he needs me. 

And I know that to him it means nothing, because I’m just ‘that person’ that he cannot bear to even look at sometimes. But I’m here for him, to help him however I can and it could be a lot worse. 

It could also be a LOT better. 

But it isn’t. And as much as I hate what our relationship has become, I’m happy that he’s happy. I can see him sometimes in Narnia, and it looks like an awesome place to be. 

I just wish I could go there and share that happiness with him. But for now, and for however long it takes, I’ll be here, waiting. Waiting to do the next thing that he needs ME for. 

To show him, even if he cannot or will not see, that I love him.

And to see him happy.

Living with Luke 79

If this were a song title, it would probably be 'I know you don't love me' by Roachford…

Does Tiddles like me? No. "Tolerates is probably a better word…"

Does Tiddles 'love' me? Probably not. People are often saying to me that he loves you deep down. Well, I don't want his love deep down. I want it near the top, where I can see it, because then I would be clear about his feelings. Shallow? Probably, but forgive me for craving something that has been taken away from me for years now.

Do I annoy Tiddles? Apparently so. But I tend to annoy alot of people anyway from time to time. I don't mean to, but I just seem to do so anyway, and for a variety of different reasons. So that's not really a surprise. It just hurts more.

Does Tiddles want me around? No, and I know this for a fact. 
I got back from the gym just now, and TCMH had gone out, leaving The Eldest Child with Tiddles. She'd been gone about 15 minutes. I went upstairs to say good morning and received my customary reply,

"Goodbye…" I gave him a kiss anyway on the cheek that he offered me and stroked his head. As I went to move away, he grabbed my hand, looked me square in the nose and said,

"Daddy! Steve. Go to the nearest fire station and tell them to call mummy to come home, STRAIGHTAWAY…"

"I will…" I said, and came away. 

It's not the first time he's called me Steve – witness his message in my birthday card last year (To Steve…), but its starting to become a regular occurrence now, almost as if he's either forgetting I'm Dad, or just preferring to not know me as such. 

Is it funny? In a way.

Does it hurt? Yes. Yes it bloody does.

He keeps repeating a phrase, probably from Thomas the Tank Engine, which is, 'I shouldn't be treated like this!' And yet, I am. Becoming more and more a stranger to my own son as the days go on.

I've written long and hard about the increasing gulf between us. Some people can't see or just don't want to see it, but i do, and incidents like this morning just underline the actual reality of this now. 

And yet, the very few and far between times that he does come back from Narnia and is Luke…

Well, they are the times I hang onto. The times when I can be Daddy.

And nobody is ever going to stop me from being that to you, my beautiful boy…