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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.

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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…

Living with Luke 78

These blogs were always just an expression of what was happening or what had happened, in the changing relationship between Tiddles and myself. A way of expressing the hurt and heartache that had been building and building for many years, but which had never before had any outlet until I started writing these. 

I’ve charted the highs and lows, the funny and the sad, and the thoughts, fears and feelings of a father who, for want of a better word, is lost. I’m losing the struggle to stay relevant in Luke’s life. The things we used to do, for example, swimming, we don’t do anymore. He doesn’t like swimming with me. I don’t read to him anymore – he doesn’t like reading or hearing me read. We don’t even go out together unless it’s something that he absolutely wants, like a train, or a DVD. All the dad things I used to do for and with him, I no longer do. That could be because of his age, but I don’t think so. I’m not in his life as his dad. I don’t actually know what I am in his life for at present. 

So with that in mind, I’m sorry.

I’m sorry that you don’t like me being near you.

I’m sorry that you don’t like my presence.

I’m sorry for my voice, annoying you.

And I’m sorry that the very sight of me angers you.

I’m sorry for caring, for trying to please you, but I’m also sorry for suffocating you with my desperate love.

I’m sorry for my taste in music, in clothes, in foods and drinks, because it all seems to bug you.

I’m sorry for being me, or not being able to be me around you, because how I am is not what you can always see.

But I’m sorry that you sometimes see the weaker me, the one that sometimes just cannot deal with it all. Like today.

I’m sorry I’m a perfectionist, because its stopped me from starting so many things that could’ve made a difference to us.

I’m sorry I’m not always happy, smiling, positive, upbeat, brave. Sometimes, I can’t help but be sad, low, fed up and just disappointingly angry about seemingly stupid things. I try not to let you see it, but I’m not always successful. 

I’m sorry I speak. I’m sorry I breathe. I’m sorry I’m here. If i could make it all right with these apologies, i’d never stop until it was so. 

But I can’t, and I’m sorry.

I’m sorry that you and I aren’t as close anymore. It hurts and I keep hoping it’ll mend, but sometimes it is like trying to knit fog.

I’m running out of things to try. Some things that are broken will never be repaired and this could be one of those things. But I don’t know when I’m beaten, until it’s too late.

I’m sorry for wanting to be right beside you, every step of the way.

But most of all, I’m sorry for never wanting to give up.

Living with Luke 77

There once was a man who had a dog. The dog didn’t have a name, it was just ‘the dog’, but it followed its master everywhere he went.  Which was weird, because The Man didn’t even like dogs.

The dog was a strange dog. Black in colour, the colour of coal. Sometimes it would keep its distance and look really tiny and other times it couldn’t keep away and was seemingly massive to its master. But always, the dog was there. Keeping track of where his master was, what he was doing and whether he should be near or far. The dog just seems to know.

The man had another animal that he loved. This creature was a gorilla. The Man would follow this gorilla wherever he went because he loved his gorilla. Which was weird, because the gorilla couldn’t stand The Man.

The gorilla was happy on his own living in his jungle of sounds and vision. He didn’t need or want The Man spoiling it all by trying to live in his world with him. The gorilla just wanted to be left alone, to sing, to play, to eat, to do exactly what he wanted, when he wanted. And that didn’t include The Man.

Meanwhile, the dog continued to hover around his master. He felt a sense of loyalty towards his master and felt that he was needed on a daily basis. Not wanted, just needed. Which was weird, because the dog actually despised his master.

The dog thrived on his master’s sadness. He loved when his master was at his lowest, because then he knew he was being ‘a good boy’, swamping his owner with all the loss and unhappiness that he could rain down on him and be the big dog that commanded respect from his pathetic owner. The dog knew that his master could no sooner get rid of him than he could stop breathing, and so the dog was happy, because his master wasn’t.

The gorilla meanwhile, was blinkered. If he couldn’t see his owner then he was happy. Because of the way his brain worked, out of sight really was out of mind and he was only reminded that he even had The Man in his life, when The Man was right in front of him, saying his stupid things, like ‘hello’. And breathing.

This of course made The Man sad, which of course made the dog, happy. And the dog grew bigger and bigger until the dog towered over The Man. And the more things that made The Man sad, the more The Man pondered and wondered and hesitated and feared, the bigger the dog became.

“I am strong but I am tired.” Said the man. The dog said nothing. He was a dog. But the dog knew that he was wearing The Man down, because The Man now had to carry the dog or risk being bitten badly. In truth, he had always carried the dog.

Whilst this was happening, the gorilla was also growing, physically and in power. With no ‘what if’ switch, he was unable to dial down the strength and power he could recall at will. There was no such thing as guilt in his mind. The concept did not exist and so without guilt, without being made to feel ‘guilty’, he did not consider the consequences of his actions. He just acted.

“You do not wrestle the gorilla until you are tired. You wrestle the gorilla until the gorilla is tired.”

The dog knew this. The Man knew this. The gorilla knew this, but didn’t care. 

The Man was drowning. He was having to work twice as hard just to stand still. The dog, loved it.

But then, one day, The Man stopped. For too many years, he had acted out of fear of being bitten by the dog. Then he remembered 3 words that a famous film star had said once in an old western.

“Well…we might…”

What he was referring to, it didn’t matter but The Man could take those 3 words and make them fit…

What if they hate it?

Well…they might…

What if they laugh at me?

Well…they might…

What if they tell me I’m wasting my time?

Well…they might…

What if…what if…what happens if…what about if…what if…?

Well…THEY MIGHT…

But if you never try or do or see or attempt it, You Will Never Know…

And the dog whimpered. For he knew that he would have to start walking soon. He growled. He snarled and he bared his teeth. He threatened, he cajoled, he begged. But he could sense that he was getting smaller and smaller.

The gorilla was blissfully unaware of all of this. His monkey brain could not see any dog on The Man’s back and could not see that maybe, The Man was beginning to stand a little straighter. He didn’t see that The Man was, maybe, smiling a little more often and a little more broadly. To The gorilla, The Man was not important enough to warrant any such attention.  If he did, then maybe he would’ve seen these things. But he didn’t. So he didn’t.

And The Man smiled. He could feel himself getting stronger and more able to ‘do’ more things. Try more things. And the dog jumped down from The Man’s back, and ran away.

The Man loved his pet gorilla, and would continue to wrestle him until the gorilla was tired and not a moment before. That was his promise, whether the gorilla heard it or not.

And though the dog had run off, he didn’t stray far. The Man was now blinkered and could not see the dog, because the animal was so very small now. 

But, the dog knew that if he could just poke his head into The Man’s line of vision, The Man would see him again, and would be powerless once more. The pet would become the master again.

And the dog could grow once more…

Well…

He might…

Living with Luke 76

These have been kicking around for over a year now. I wrote these in a fit of thinking they could become songs. But although they never happened, I still love the words. They’ll probably never become songs now, so they’re just…lyrics? Poetry? But they do still convey what this blog is all about.  So in a break from the norm, here are 2 of them…


WOULD YOU?

If I went away from you,

Would you kiss me?

If I said goodbye to you,

Would you miss me?

If I failed you, would you forgive me?

Would you?


If I angered you,

Would you hit me?

If I left you alone,

Would you forget me?

If I needed you, would you accept me?

Would you?


Would you be my little boy?

Would you draw me in,

And let me be your dad?

Let your walls come down,

So I can bring my heart to you?

All I ask, it’s not that much, is

Would you?


If I came close to you,

Would you push me away?

If I ran after you,

Would you allow me to play?

When I speak to you gently,

Do you ever really hear me whisper,

That I love you?


If I wanted your attention,

Would you spare me the time?

If I gave my life for you,

Would you ever give yours for mine?

You’re my son, you’re my boy,

And we share the same name,

So, would you?



Let


Let me visit you in your world,

Or maybe you could visit mine?

I want to see you in your world 

Or could I see you in mine?


Let me play with you in your time

Let me live through your eyes

Let me see what you can see

Let me have this little prize


Cos I would do anything 

To see the way you do

If I could just feel for a moment

Any love for me from you


And you will do anything 

To keep me out of your heart

To keep as far away as possible 

And keep us both apart


So can I visit you in your world 

Or can you visit me in mine?

I could see you there in your world

Or maybe see you here…


In mine?

Living with Luke 75

She makes to leave the house, getting everything she needs to go straight out. Making sure she double checks so she doesn’t have to come back, because coming back would only make the situation worse.
(Stay calm.)

She kisses me goodbye, before going upstairs to kiss The Eldest Child and then…saying bye to Tiddles.

(Stay calm.)

I know what’s coming.

“Mummy see you later.”

“NO see you later! You stay here!”

“Mummy’s going to work, I’ll be back later.”

“Mummy be back NOW!”

“Daddy’s here, daddy will make you soup.”

(Stay…calm…)

“No Daddy. Daddy’s not well…You stay There!”

“What’s wrong with Daddy?”

“Daddy’s not very well…”

(I’m fine. Stay calm.)

“Mummy will be back soon.”

“Mummy be back NOW! No rehearsal. You stay There.”

“Mummy has to go to work. I’ll see you later.”

“NO SEE YOU LATER!!”

And she goes. Tiddles chases her down the stairs, blocking the door to stop her leaving.

(Stay. Calm.)

The door closes and Tiddles stands at the window, shouting, yelling after her.

“DON’T GO! NO SEE YOU LATER. COME BACK! COME BAAAAAACK!” And then the tears. And he shouts some more. And then he’s ok.

(Stay. Calm.)

And then the questions start.

“But where’s Mummy?”

“Ooh, it’s too late, it’s 6 o’clock, mummy will be back soon…”

“But where’s Deb?”

MUMMY is working and she will be back soon.

“MUMMY BE BACK NOW! NOW!!”

(Just stay calm.)

“We have to tidy up, before the mummy gets back…”

“Where’s my mummy?”

And then, out of nowhere a mini meltdown ensues. He sits and shout gibberish words and cries and cries and cries.

And I can do nothing. I can’t say anything or DO anything. I can’t cuddle him, or touch him because he will hit me, and does from time to time.

(Stay calm.)

I want to make him understand that I love him just as much as his mum does. But I can’t because he doesn’t understand, and nor will he ever get just how much I adore him.

So he shouts and he cries and he slaps the nearest thing to him, which sometimes is me. And if it’s not then he will search me out to whack me. 

And I try to stay calm.

“It’s alright Luke, mummy will be back soon.”

MUMMY BE BACK NOW!!”

“Luke, it’s ok…”

“No it’s not ok!”

“What do you want?”

“GO AWAY! YOU GO HOME!”

(Stay calm. Stay calm. Stay calm. Just stay calm.)

I don’t stay calm. My voice is even, but inside I am hurt, angry, annoyed, frustrated, upset. But not calm. And I speak, knowing full well I’m speaking to myself as 99% of the words, he doesn’t register or understand. But I say them anyway, because I have to.

“I am really, really sorry that you hate me so much. I am really so sorry that you don’t like me and I am really very sorry that your mum is not here for you right now. I am sorry for all of it, but I’m here and I want to help you. I know that you don’t understand what I’m saying, but i want to help you!”

“No help me…”

(…)

“Mummy will be home soon…”

“MUMMY BE HOME NOW!!!”

Yep she will be…Just hang tight my Prince…she’ll be here soon.