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Living with Luke 41

So…

Following on from the last couple of blogs about Tiddles and his love or seeming lack of…this was the conversation that TCMH and I had a few days ago…be warned, it contains lyrics of an 80′s nature…

“I was talking to Michelle yesterday about Amy.” Said TCMH. “She asked Amy if she knew what love is…”

“Did she want her to show it?” Said I.

“No,” replied TCMH, “Amy said she didn’t know what love is…”

“Perhaps she knows she can show it…?”

TCMH paused and had the type of look on her face that said, We’re married…why, exactly?
“I’m just going to keep on saying it until I get a laugh…”I shrugged.
“You’ll be waiting a long time…” she murmured. The withering put down. She may not come up with relentless jokes, but TCMH does have a nice line in devestating humour. I asked her once what it was like being married to a comedy genius.

“I dunno,” she replied, “I’ll ask Billy Connolly’s wife…”

This blog has been difficult to write this week, due to my general mood which has been low. I’ve been fed-up, sad, pissed off and generally feeling a bit sorry for myself. I’ve not been myself, but then again, maybe this is what I am really like and the ‘other’ me is the fake?

However, although I often think that Tiddles doesn’t really have any thoughts for anybody else except himself, he seems to sense that something is up with ‘Goodbye Daddy’. I’ve had some unprompted cuddles and…well, that’s it really, unprompted cuddles. I’ve done my level best not to be sad or annoyed in his presence, after all, nothing that’s happening to me right now is his fault-or anybody else in the house for that matter-so I’ve been happy and jolly with him, or at least as much as he will allow me to be. He still shouts at me, like he did today. He still hides from me, like he did today. But just occasionally he slips across briefly from Narnia and makes me feel like his dad again.

And in the greater scheme of things, that is really all that I am after.

It’s a sad fact that men in general are thought of as a bit of a joke these days. We’re vilified in the media and told as a gender to ‘man up’, to stop being pathetic, weak, less manly, whatever that means. A cold is brushed off as ‘Man-Flu’, the inference being that men can never be as sick as women and that we as fathers, can never have the same emotional attachment to our children that mothers do. So what do we do? We plough on, burying our feelings, our fears, not wanting the ridicule of society pointing it’s collective finger at us and telling us to ‘man up!’ and we try to become the very thing that everybody is telling us we should be, only to be told that we are NOW being ‘a bloke’, a lout, thuggish, unfeeling and worse, uncaring. We’re fighting a battle that was lost years ago. And we try desperately to express ourselves and vent our frustrations in other ways. Like this blog…

I realised today that has been about a year since I started writing ‘Living with Luke’. It was a way of putting down on paper exactly what I had been burying for the last 12/13 years, my feelings, my fears. Has writing them changed my relationship with Tiddles for the better? No. If anything it has only served to highlight just how far he has drifted away from me and continues to do so.

I wrote in my first blog how it was like somebody had broken in during the night and replaced Luke with Tiddles, an almost exact replica of my son and how I have silently grieved for the boy that might’ve been. This past year has shown me that I miss him more and more everyday. I’m not the man I was. I’ll always be his father, but I may never really be his dad. That’s my penance for whatever hurt I have caused the universe. But I’ll man-up and just do the best I can for my beautiful boy and try not to show any weakness to him, no matter how much it hurts to have him reject me.

I heard a song the other day that I loved but hadn’t heard for years. I fell in love with the video and the song become a big favourite of TCMH and I. Upon hearing the song again, it’s another song that couldve been written about Tiddles, as it contains the lyrics,

If this world is wearing thin,
And you’re thinking of escape,
I’ll go anywhere with you,
Just wrap me up in chains.
But if you try to go alone,
Don’t think I’ll understand.

Stay with me.

Heartbreaking stuff, especially more so later when Siobhan Fahey sings,

You better hope and pray,
That you make it safe,
Back to your own world.
You better hope and pray,
That you wake one day,
Back in your own world…

If only…

Living with Luke 40

So…

Readers of these blogs are well aware of my trouble dealing with Tiddles the Silverback when I come into the room or indeed home as he appears to loathe the very sight of me.  As an experiment last week, TCMH suggested that instead of saying hello or indeed anything to him when I sees him, to instead just ignore him and wait for him to come to me. Her reasoning being that if you try and get a cat to sit with you, the cat will do the complete opposite and wander away.  So, this week I’ve tried exactly that and it has been a success, in that he has totally ignored me, hasn’t said a word to me and generally has had a lovely time…

Today is my birthday and I am 46. Handsome, witty, charming, athletic are all words. Now I reckon by my calculations that I have 104 years left, give or take a year. But what if I didn’t? What if I had just a year or even just a day left with Tiddles? And naturally that got me thinking…

Tiddles…Would you miss me if I wasn’t here?

Would you miss me if I wasn’t here?
Would your days still play out the same way?
Would you still do all the things that we used to do?
Would you miss me if I wasn’t here?

Would you miss me if I wasn’t here, my son?
The question’s rhetorical, I know you won’t talk,
For you, It’s not worth answering,
So the point is moot.
But would you miss me if I wasn’t here, my son?

Would you miss me if I wasn’t here?
Would you miss all the chasing, the carrying, the trips?
Would you miss all my kisses, having someone to hit?
Spending hours in the water on cold summer days,
Would you miss me if I wasn’t here?

Would you miss me if I wasn’t here?
I’ve raged at a god that doesn’t exist,
I’ve shouted and cried and shaken my fists,
But you’re still my son, and one that i’d miss,
But would YOU miss me if I wasn’t here?

Would you miss me if I wasn’t here?
You hide when I walk in, you won’t say hello,
You often act as if you would rather it be,
Just you. And mummy. And your ipod. And cake.
Would you miss me if I wasn’t here?

Would you miss me if I wasn’t here?
My heart it breaks daily, just like in the books,
But there’s no Happy Ever After, believe me I’ve looked,
But maybe one day, my son, you’ll return to me…

So, Luke Hannam…

Would you miss me, if I wasn’t here?

Living with Luke 39

So…

This is not as sad as it sounds.  Alright, it IS sad but it’s also quite funny in a sad sort of way.

Ok, so on reflection it is sad, but at the time I thought it was funny. Confused? Ha! You ain’t seen nothing yet!

Soooo, anyway. I was in the kitchen last week, attending to my duties and the question of whether or not Tiddles ‘loves’ me came up again.

“He does love you.” said TCMH.

“Maybe in his own way.” I replied.

“He does!” insisted The Current Mrs Hannam. “Luke, do you love daddy?” Tiddles took a brief moment to consider the question. I could tell he was thinking about it because he looked up from his iPod.

“No…” came the blunt reply. I laughed only because I knew he was going to say that. TCMH however, wouldn’t give up.

“Aww you do!” she said, “Tell daddy you love him.” And then in a moment of connection, Tiddles looked at her and said,

“I don’t love daddy…” As sad as this was, I still laughed, mainly because he had engaged in an actual conversation and responded exactly how a ‘normal’ person should/would respond. TCMH still wouldn’t give it up though.

“He doesn’t know what he’s saying!” she said, almost echoing Tom Cruise in ‘Rainman’ (ironically). “Luke, do you love your iPod?” I could see him through the hatch as he shook his head. “You don’t love your iPod?”

“No…”

“See!” she called, almost triumphantly, “And what about mummy? Do you love mummy?”

“Yes…”

“Oh…”

“There you go,” I shouted, “proof, if proof were needed!”

“Well, he does love you…” came the muttered reply.

The thing is, I know he does, but it certainly is in his own way and only on his terms. And as evidenced by the above, it can be painfully fickle at times. He will sit with me and not always because he wants my Amazon account. He likes me chasing him around the house and tickling him, but I can’t make him love me anymore than anybody can force somebody to love them. He does like to whack me, as i’ve mentioned previously, but I have noticed that the slaps and kicks are getting harder these days. This is probably all my fault as I tend to play up these ‘attacks’ which only makes him want to do them more. With TCMH, he knows he has to apologise, but with ‘goodbye daddy’ he is aware he can get away with it. But I would rather it was me than anybody else. If it lets him vent a moment of anger/annoyance/or even pain, then that’s fine. I just hope that he is aware, somewhere in the back of his mind that he knows that I love him, and will continue to do so for the rest of our lives together.

The sore shins and kneecaps may come back to haunt me in later life though…

I haven’t quoted any song lyrics for a while, so here’s some from Simple Minds, ‘All The Things She Said.’ Although obvioulsy written about a lady, the bridge of this song always makes me think of Tiddles and maybe, just maybe in my little fantasy world this is what he thinks sometimes as he looks across from Narnia.

“Oh to be near you in the first morning light,
I’d be with you, I dream about you.
If I could leave here, I would leave here tonight,
I’d be with you, I’d stay with you, tonight.”

We can all dream can’t we?

Living with Luke 38

So…

This week I wrote a book.

Well…that’s not strictly true.  This week I published a short story, I actually wrote it about 3 years ago.  Nothing like a bit of spontaneity is there?  And this is nothing like it either.

It is a story about my pirate creation, Captain Square Jaw and I wrote it as a proposed sampler for a re-launch of my other Captain Square Jaw book, which I had re-edited. Sadly, it didn’t happen and the story sat in my pc files whilst I ummed and arrred about what to do with it – and not in a pirate way either.  

In the meantime, Tiddles started to drift away from me, developed Epilepsy and was discovered to have high levels of Mercury and Arsenic in his body, which meant that he could not have his favourite foods.  What it did mean was that he was now having to take any number of supplements in an effort to rid him of these heavy metals.

We managed to secure funding for a few months, but after that ran out, we had to find ways of paying for these supplements on a month to month basis.  We sold some things.  We used credit cards.  But what else could I do to help with this?  Hang on…I had a short story somewhere didn’t I?  Couldn’t I sell that as an eBook?  No agents commission, no publishers commission, I could sell it cheaply and get 35% as a royalty!  

So last week, after much editing and re-editing and a huge favour from Geordie Jim Thompson with the cover, I published ‘Square Jaw and the 49 Page Adventure!’ through the Amazon KDP platform.  Lots of interest from everybody, which if I can turn into sales would go a long way towards another months supplements.  

Admittedly, it’s a long shot.  The supplements cost over £300 per month and as I’m selling Square Jaw for about £1 a time, I get 35p for each copy bought.  I’d have to sell over 1000 copies to stand any chance of it working successfully.  But, as I keep saying, what else can I do?  What would you do?  I have to hope that this works even a little bit, so that Tiddles stands some chance of making progress.  I can only keep stressing that he is my boy, my son and I am doing the best I can for him, with what I have available to me. I’ve given up the hopes I had for becoming a successful writer because money needs to be earned, for him.   I suppose you have to keep the faith.  He is one of the most important things in my life and it kills me that he reacts the way he does to me.  If my writing this story and any subsequent stories can help re-build that bond, that bridge, through these supplements, then I have to take a chance on it, don’t I?

Tiddles was acting very strangely on Thursday.  Now when I say strangely, I mean this not in a bad way.  He was very attentive toward me and I couldn’t figure out why.

“Well, he loves his daddy…” remarked TCMH, which I conceded might’ve been the case if i hadn’t caught him eyeing my iPhone on Thursday evening.  I’d seen that look before.  I let it pass, because he was sitting with me and it’s always a bonus when he does that these days.  Then he did it again, this time moving his hand as if to pick up my phone.

“He doesn’t want to sit with me,” I sighed to TCMH, “he wants me to buy him something…”  And sure enough, upon asking him what he wanted, he replied,

“The New Adventures of Superman…own it on DVD…” mimicking the trailer for the TV series.

“Is that what you want?” I asked.  He nodded his head.  “Yes, what?”

“Yes…please.” came the reply.  As is now sometimes the way, Tiddles had an ulterior motive for sitting with The Old Man, and it is usually something to do with me buying something from Amazon.  He didn’t want me, he wanted my account!

Nice to know that I am good for something that isn’t just making up recipes for food he can eat.  With all the stuff that he CAN’T eat it does tend to get a bit like the Culinary A-Team here at times, adapting recipes to remove the sugar from one thing or some herb from something else.  

But I love it when a flan comes together…

Living with Luke 37

So…

It has been a bit like being at the Ministry for Cold and Flu Research this past week, with TCMH suffering with a nasty sore throat and Tiddles going down with a bad cold. Bleary eyed, coughing, croaky voiced and just wanting to stay in bed – but she is good with the kids…And Tiddles has been looking distinctly under the weather as well. Where does a gorilla blow his nose when he has a cold? Anywhere he wants to…

I myself bravely recovered from a slight sniffle, but the thing about Tiddles is that when he gets ill he doesn’t actually stay ill for long. He may have a day when he just lays on/in his bed or the sofa, but then the following day he’s back to his old ‘Tigger’ self, bouncing around and apart from maybe a red nose, you’d never know he was unwell.

So, that was last week.  Yesterday was my grandad’s funeral which went off very well. We took Tiddles, who did keep asking to go outside and at one point almost broke into singing the end theme from ‘Stingray’, but apart from that he did do very well. TCMH had tried to explain about great-grandad Fred ‘dying’, but Tiddles just asked to go ‘diving’.  Maybe he had the right idea…

But one thing I have noticed in these past couple of weeks, is how cuddly he has got. And by cuddly, I mean sitting on my legs with his arm around my neck.  This has happened a few times and whilst sometimes the arm around the neck is like having your head squeezed off, i’m not complaining.  He’s heavy, he’s noisy and sometimes he does hurt me, but do you know what?  It doesn’t matter. I love it.  Everything else remains as it was, however.  He still hides when I go into his room, he still says ‘bye-bye’ when I say ‘hello’, and he still belts me. Maybe this will never change, maybe this is how it will always be.  Then again, he’s learned this reaction to me from somewhere and for some reason, maybe he can unlearn it?

I cannot even begin to imagine what goes on in that head of his, or even what he sees when he looks at me.  His reaction sometimes makes me wonder if he can see something ‘more’ than what us ordinary mortals see.  If that is the case, how frightening must I look to him for him to hide the way he does?  And how can I change that, if I can change it at all?  As I’ve said, his reaction to me has changed in the past year so there has to be some reason for that.  ‘Dislike’ is probably the wrong word to use, but that is how it comes across at times.  We’ve all done it at some point, taken a dislike to somebody for some unknown reason.  It’s human nature, some people just rub us up the wrong way. It’s not anything that anybody can explain sometimes, we just cannot get on with somebody.  It has happened in reverse to me and I cannot fathom the reasons for it.  And because I think I can get on with everybody, I tend to try that bit harder in a fruitless attempt to prove that they are wrong not to like me.

But when it’s your own son that appears not to like you, well that changes the whole landscape.  It has floored me to think that my little bundle of ape-like joy possibly cannot stand the sight of me, at least for the majority of the time anyway.  He tolerates, maybe even accepts that I live in the same house as him, but that doesn’t mean he has to like it.  That may be extreme but when you have time to think about these things late at night/early in the morning, these are the conclusions that you come to, sadly, because the evidence seems to be telling you so.  

I guess that’s why I don’t mind taking the hits, the knees, the headlocks.  I accept those along with the cuddles, the dancing, the occasional invites to chase after him because they are part of our life together at the moment.  I’ve begun to get used to them as the ways things are these days.  It doesn’t stop me from trying hard to change them though.

So…

Watch this space… 

Living with Luke 36

So…

Last week was a pretty crap week for us.  I started off the week with a sniffy cold, which was just annoying.  Then on Sunday, Tiddles and The Eldest Child’s Uncle Clatter (one of my brothers), bravely managed to break his leg and knee playing football and had to have an operation to have bolts and plates put in to hold it all together.  So far, not great…

Then in the early hours of Thursday morning, my grandad died…

I never called him grandad, I and everyone else always called him ‘Fred’.  Fred was 92 when he passed away, having lived as full a life as he possibly could, having survived World War 2 as a decorated paratrooper and seeing action in Italy and Africa amongst other places.  Returning from the war shell-shocked, he spent the next 70 years enjoying himself and his family, even helping to build Harlow New Town in the 50′s.  

He will be missed by all of us…

Naturally at these times, you begin to reassess your own life and the lives of those around you.  Especially the life of Tiddles.  But I have thought constantly about our future and my fears that I have for him and for me and have written about those fears elsewhere.

No, these thoughts are about him.  Would he miss me if I died?  The strange thing is, although he wasn’t close to Fred, I honestly think that he was curious as to where he was when we visited my Nan on Saturday.  Being autistic means that you are pretty much isolated or even cocooned from the feelings of grief, guilt or even sadness.  Tiddles can get upset about things, but he wouldn’t be upset about the death of somebody, as he cannot empathize with those around him.  

But would he miss me?

Everybody’s natural reaction would be, ‘Of course he would! You’re his dad!’  That much I am painfully aware of, but that just only makes it worse because whilst I think he may wonder whats happened to me, in the long run I think that I would be just a picture to him.  

Now I know that that may sound sad, and actually it IS sad thinking about it, but in a way it could be viewed as a blessing to him.  I know he would miss TCMH, as even now he asks …’when mummy comes back…’ on Saturday’s when she is out working during the day, but as I have said before, he barely acknowledges my triumphant return from the World of Work.

(Mind you, he’s not the only one…Mentioning no names, but her name is an anagram of HCTM…)

In fact he acts sometimes as if it’s the last thing on earth that he wants to see walking through the door.  And after some days, that is quite hard to take.

But taken to the other extreme, if/when the time does come, he will not go through the pain and loss that the rest of the world will experience.  He’ll barely notice the public holidays taken in my name or the state funeral passing through Lon-Don, wondering instead why he isn’t going to Hamley’s for a toy train.

I jest of course – I don’t want a public holiday – but the core of the jest remains the same.  As much as I think he tolerates me he probably won’t miss me when i’m gone.  Don’t get me wrong, I have absolutely no intention of going anywhere for the next century (at least).  Why?  Because of Tiddles.  The Eldest Child I have no doubt will become a great man in his own right whatever he decides to do, he’ll always have my support.  But Tiddles, who may not know it or even want to know it, needs me.  And because I know that he needs me, that is what is driving me along to stay with him for as long as I possibly can.  

He’s my son and I love him.  How can I not?

When he decided to leave for Narnia, it broke my heart.  But as much as I wanted to pull him back to me, I knew that it could probably be the worst thing that I could do.  I very reluctantly let him go, but I hope that by constantly being here awaiting his return he realises that I am ALWAYS waiting for him to return and that if he ever, EVER needs my help to come back…

Then I will always be here.  Ready…

Living with Luke 35

So…

If you were out on the street and you saw somebody that you knew, went up to them, starting speaking to them and that person refused to look at you, or even acknowledge you and then just walked away from you without saying a word, what would you do?  For most of us, we would dismiss them as being bloody rude and probably never bother speaking to them again.  A few of us may even chase after them and demand to know why they are behaving in such a rude way.  But one thing is for sure, we would be very hurt by the snub.

And yet…

Living with Tiddles, this is what I get all the time.  I’ll speak to him.  Nothing.  I’ll look into his eyes.  Nothing.  He’ll look around me, in that he won’t meet my gaze.  It’s as if the whole effort of looking at me is too much like hard work for him or even too much for him to bear.

I imagine, or rather I know, that this is the norm for a lot of parents of autistic/special needs children and I’m well aware that I’m not alone in this situation.  But as I keep pointing out to TCMH, this is about Tiddles and I.  The whole point of this blog is to highlight my relationship with this special, beautiful, ‘little’ boy.

But what can I do?  I’m lucky to have him in the first place, so who am I to start dictating the rules of what I want from him?  We play by his rules and pretty much all of the time as well.  The relationship we have has very, very slowly, but very noticeably drifted apart.  But we do have our (all too brief) moments when he connects with me again.  And believe me, I count every neck squeeze, chest slap, foot stamp, finger bite and belly poke as connections.  But there are also those rare and wonderful times when he squeezes me so tightly that it makes me happy to be his dad.  It’s almost as if he HAS to squeeze me or he will die, almost as if he’s saying,

“Quick! I need to hug somebody really tightly, my life depends upon it! You old man, you’ll do…”

And then there are also those moments when he laughs that unbridled and uncontrollable laugh when he has heard or seen something genuinely funny. And sometimes those moments are down to me.

We all struggle with our day to day lives and we deal with the challenges the best we can. Sometimes we’re ahead and life seems good. But then sometimes we feel like we’re drowning and there seems to be no easy way out. With Tiddles, there always seems to be no easy way out and his ever so slowly increasing reluctance to have me as part of his life does indeed feel like drowning at times. I have no option but to go with it. Why? Because he’s mine, whether he likes it or not. He may not show it, and indeed he may never show it, but I have to believe that deep down he would miss not having this old punchbag around, this big cuddle post. And I have to believe that, I have to hold onto that thought every time he rejects me with his words.

I love you Tiddles and that’s what I have, the one thought that I have to hold onto with all my strength until I can see you in my world again.

And in the meantime…

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