Skip to content

Living with Luke 63

Just once, Tiddles…

Just once, I’d like you to say good morning to me, instead of turning away.

Just once, I’d like for you not to hit me, when I move in for a cuddle.

Just once, I’d love you not to shout at me when I ask you to do something.

Just once, look at me like I’m a friend, instead of an enemy?

Just once, I should be crying, but I just can’t let it show…

And just once, I would like to you to have a glimpse of the grief and sadness I feel about you. 

But also – just once – I’d really love you to know just how much I do love you. 

Just once, ‘I just wanna hold you close, and feel your heart so close to mine…’

Just once, Luke, I’d love you to call me ‘Dad’, instead of ‘Go away’…

And just once, could you know? Just really, really know? 

Just once, I wish you’d be with me now, instead of asking when mummy is coming home.

I want you to read these words, just once, and realise that they are my love letters to you. And that they always have been. 

Just once, realise that although I may love you ineptly, I will love you…always…

Just once, Tiddles – know that I know…you. 

Just once, Luke Hannam.

Just once…

Living with Luke 62

Non-communicative and non-verbal…What’s the difference?

“Video piracy,” according to Tiddles, “is a crime.  Do not accept it…Ensure that you purchase or rent a genuine copy, from your video retailer.”

Well, actually it isn’t according to Tiddles at all.  This is a plea from FACT, the Federation Against Copyright Theft, or if you’re in Ireland, INFACT.

How do we know this?  Well, we all know this – as well as the telephone number (0181 568 6646, 90’s fans!), because Tiddles did pretty much nothing else but repeat this warning all the way to our holiday destination in Norfolk a few weeks ago…2 hours and 20 minutes drive.

Yes, for 2 hours and 20 minutes, he talked, sang, quoted from FACT, Thomas the Tank Engine, Dig & Dug, Batman, FACT, FACT, FACT…you get the idea.

And yet, as soon as we pulled up and stopped the engine…nothing.  Not a word.  It was almost as if the verbals had been his way of filling the void of the journey   His way of occupying himself.  Whilst The Eldest Child and myself occupied ourselves by trying not to be travel sick, and TCMH drove, Tiddles waffled on and on and on and indeed on.

The holiday camp was however, lovely.  Quiet, and not an awful lot going on anywhere.  No clubhouse (Awesome!), no children’s playground, very few people around at all really.  Beach 250 yards from where we were.  An awful lot of nothing going on.

Lovely…indeed, the only time the peace was broken was when a young teenage boy decided that he was going to stand outside his chalet and shout – nay, bellow some lines from a TV show or some such thing.

Oh yeah…That was Tiddles…

Luckily, we had warned the ladies living next door about him.  And the office staff…

I posted on the Living with Luke page a few months back that Tiddles already had his bags packed for the holiday, which in actual fact was two bags full of DVD’s.  Clothes?  Pah!  I smack you in your ignorance…But due to a lack of space, we managed to get it down to one bag, which still contained about 30 DVD’s in it.  Tiddles was happy, we were happy that he was happy.  And of those 30 he probably watched…2.  One of which was half of one episode of the Simpsons – the one where Smithers goes on holiday, leaving Homer to assist Mr Burns, and then who ends up punching him in his 104 year old face – which is a classic, but only because we never get the chance to watch any others to compare it with.  And the other was ‘Son of Flubber’ a 50’s Disney film starring Fred MacMurray, which Tiddles absolutely loves.  We know this because he added that to his repertoire for the return journey.  If I see that film ever again, it’ll be too soon…

It’s strange really.  Well probably not to parents of Autistic children, who may well be reading this and nodding their heads in agreement.  But to everybody else, who have asked in the past,

“Ah he’s Autistic, is he?  Does he speak?”

“Well, he’s non-communicative…”

“What does that mean?”

“He talks.  He just doesn’t talk to us…”  And they nod their heads as Tiddles recites great swathes of dialogue from one programme or another, seamlessly segues from one Thomas song to another, and then into another song, changing the lyrics as he does so to fit what he’s singing about, and you can almost see them thinking to themselves,

“He’s LYING…”

So.  Non-verbal?  Yes in a sense, when he’s (not) talking to us.

Non-communicative? No.

After all, video piracy is a crime.  Do not accept it…

Living with Luke 61

A few weeks back, we performed our play, ‘Living with Luke’ to our biggest audience to date. Over 200 people came along and saw us. After the show, I had many people come up to me and say just how much they enjoyed the show – if enjoyed is the right word. The reaction we received was astounding, as it always is whenever I and the rest of the cast get such incredible feedback.  Gradually, the crowd dispersed and we reflected on another successful evening of this brilliant play.  Eventually, still on a high, I said my goodbyes and drove the hour home.  Arriving home, I got in and went upstairs, going to see Tiddles, as I knew he would still be awake and his being the first bedroom I would go into.

“Hello!” I said quietly to the prone figure lying watching his iPod video’s.  “How are you?” No answer, which is nothing unusual, so I leant in for a goodnight kiss.

I didn’t get one, as Tiddles pushed me away…

This is me, Living with Luke.  The play was forgotten, as I stood up, realising that life was imitating art, imitating life.

“Goodnight Luke, love you.  Sleep well, sweet dreams, see you in the morning.” And I turned away to go into The Eldest Child’s room, where we had a chat about the show.

But I was sad and I think it showed.

I Live with Luke.  With all that it brings.

On my list of things to do today, I was going to write a blog about our holiday the other week.  I was until Tiddles head-butted me in a fit of anger.  It wasn’t hard, but hard enough to make my nose crack and my eyes water slightly.  But it served as a reminder that sometimes, Tiddles can be so frustrated and angry at me for whatever reason, that he will do something like that in an effort to keep me at arms length, figuratively and literally.

So I’m sad about that.  But I Live with Luke.

“Where’s mummy now?” he asked, not for the first time today.  To be honest I didn’t answer him, because whatever I said wouldn’t have made any difference.

“Sorry Daddy…” he said.  I didn’t reply, because in this instance, I knew that this was an automatic response because he wanted the TV remote back that I had taken from him.  I carried on doing what I was doing.  5 minutes later…

“Sorry Daddy…”  This time I went and sat down beside him, hoping that this might actually be genuine.  Another 5 minutes passed.

“Sorry Daddy…” and I looked round to him, to find him still looking at his iPad and playing on his laptop.  There was no genuine remorse, it was purely automatic.  The TV remains off now and the remote has been forgotten, for the moment in any case, as has the head-butt…by Tiddles at least.  He still has the iPad and the laptop.  I can hear him as I type this, talking away to himself.  I’ve been forgotten about too.

Out of sight, out of mind.

It’s sad because we had had a couple of really nice days recently, and, whilst I was under no illusions that things have miraculously changed for the better overnight, I was thinking that there may just be a glimmer at the end of the tunnel.  But then I’ve had a couple of slaps and punches, and then the head-butt – which he hasn’t done before – and I understand that the more things change, the more they stay the same.

My name is Steve Hannam, and I Live with Luke.

Living with Luke 60

Wow…

So here it is, post number 60.

I am, as ever, astounded that a) it ever got this far and b) that people are still reading them. After all, it’s a blog about a father and his son, right? There are plenty of those in this world, right?

Well…yes. And no…

As the self help books are ever prone to reminding us, there is only one of us in this world. We’re unique. Even an exact copy of us will experience life in a completely different way to us, so yes, whilst there are indeed lots of fathers with sons, lots of fathers with daughters, and indeed lots of fathers full stop, there’s only one of me. One father of Tiddles.

And only one Tiddles.

Lots of beings called Tiddles, but only one Luke James Hannam. And he only gets one dad – Me. For all my faults and weaknesses, my failings, my strengths, my triumphs, I am and will forever be your Dad, Luke.

And for whatever reason that you may not approve of that, it’s a fact that you cannot get away from.

No matter what, I will always be here for you and you will always be my boy…my son.

I have no hopes for you, no dreams, except to be a part of your life once again. There is a fire, a burning love that would consume us if we let it, but until such time as you would walk through that fire with me, then I’m going to love you unconditionally and completely. And even a little bit sadly.

Sometimes, there is no shame in admitting a defeat. It’s all about how you get back up after that defeat that defines you as a person. They are all hard to accept, these defeats, these setbacks.

These failures.

And I have failed many, many times with Tiddles.

But we get up, brush ourselves off and go again. And again. And again. Why? Because I love him. Because I would do that for The Eldest Child and TCMH if I had to, and have had to in the past.

The other week was the first anniversary of our first performance of ‘Living with Luke – The Play’. It was, and continues to be an emotional experience, and we are due to perform to about 200 people this week in a one-off performance in Colchester’s Mercury Theatre, in Essex.

The whole thing has been amazing, from the writer and actors themselves through to the responses from every audience that has so far seen it. As much as it gets to me every time I say my lines – my words from earlier blogs – I enjoy every single show. Audiences ‘get’ it. They have taken this simple little story to their hearts, for whatever reasons they have, be it because they too are parents of autistic children, or they love the setting, the wrestling, the drama, who knows? It has the potential to become something much bigger, playing to more people over time.

But the one person who doesn’t get it, or even possibly realise that something like this even exists about him, is Tiddles.

He doesn’t realise the love and affection that people have for him, even though they have never met him.

And that’s fine. He doesn’t need it.

But he also doesn’t know the love and affection that the other character in the piece has for him, and that’s not fine, because I need it. I need him to know. But he probably never will know that either.

Oh, he may benefit indirectly from the future of the play, wherever that takes us. But he won’t know the reasons behind the play, behind the blogs in the first place.

As I’ve said before, these have all been love letters to my Quiet Prince. Things I wanted to share, needed to say, to make people aware that a father can love his son from a place of genuine, honest, heartfelt, simple, unconditional Love.

And throughout every blog, the same message has continued to thread and weave it’s way into every word I’ve put down here, every comic situation, every heartbreak, every triumph…

Every failure…

And it’s this, now, then and as it’s always been.

I love you Luke Hannam. I know that word means absolutely nothing to you and it probably never will, but I love you so much. You are my little boy and you always will be and I will love you and protect you until the day that I die…

With Love, from Your Dad…

Living with Luke 59

I was reminded the other day of the frailty and temporary nature of the human life.

We’re here, if we’re lucky, for about 80-odd years. Some of us manage to live for longer and some of us are sadly taken much earlier.

When I was growing up, my Dad – who is still with us, I hasten to add – was a very fit man.  He played Sunday league football, nearly had a trial for West Ham, and was generally a very healthy human being.  Didn’t smoke, hardly drank, looked after himself pretty well.

Then the passage of time and some of those crunching tackles both given and taken, began to catch up with him.  Knee joints were replaced, back problems plagued him for most of his mid-life, and with all of this of course, his general fitness began to decline.  It wasn’t his fault of course.  Much like my granddad, the spirit was/is willing, but the body has other ideas.  He’s not frail by any means, he’s still willing to have a go, but of course, this just means that he pays for it later on.

I’ve been lucky.  I still have all my own knees.

I’ve managed to avoid the problems that all the other members of my family have inherited from granddad it seems.  If it’s not dodgy knees, then it’s broken legs that have required paper plates and bolts inserted or something like that…Anyhow…

As I said, my Dad is now 70.  He won’t mind me saying that because he doesn’t read these anyway – if it’s not Jack Reacher, then fargeddabowdit…

I’m joking of course – he can’t read…

But 70, is THAT age.  When you realise that you are now stronger than your Dad, the man who used to fling you about in the swimming pool, who used to fling you about in the living room, the man who used to fling you about on the beach…come to think of it, he used to fling us about quite a lot…But anyway, the point I’m making is that knowing that you can now help make his life a little easier, just makes me WANT to take that burden off of him.  Just as he used to tell my granddad – his dad – ‘off’ for lifting heavy stuff, and to leave it to him, I now find that I am doing the same to him.  I don’t want him hurting himself, so I find myself becoming much like most sons when they realise that nothing is forever.

I say ‘most’ sons.  Of course this doesn’t apply to Tiddles.

I was mowing the grass the other day and thought about how i would appear to Tiddles when I am much older.  As stated in previous posts, I fully intend to live until I’m 150 years old, and I think that retiring from playing football has added minutes onto my life span.  I’m actually training harder and more often than I used to, but why?

Simply that I want to be around for him.

The irony of it all of course is that he will never be in the position I find myself in with my dad.  He won’t ever look at me and think, ‘He’s getting older now.  Maybe I should be helping him a bit more…?’  Never going to happen.  He is always going to be oblivious to the ‘obvious’.

I came to the door the other loaded up with bags of shopping.  I looked like a cart horse with saddle bags.  TCMH swears that that is the only reason she married me was because of my ability to carry ALL the shopping in one go.  Anyhow, the window to the living room was open and Tiddles was sat in his usual spot on the sofa and could see me as I walked up to the door.  I couldn’t get my key into the lock because of the bags, and so I said to him through the window,

“Can you open the door?”

“Yes…” he said, and continued to sit there.  He didn’t realise I was asking for help.  As far as he was concerned, all I had done was to ask him if he was able to open a door, which of course he could, and had told me so.  Job done, back to the TV…

So, it’s down to me.  The Eldest Child will be off soon, pursuing his own adventures, and so I need to be able to take care of not only myself by staying fit, but also Tiddles as he gets older as well.

And I need to learn to rephrase requests for doors to be opened too…

Living with Luke 58

The other day I wrote this…

‘I fully intended to write a new blog post today. I had it in my mind and was going to get it all down. But I haven’t. The reason is that, I’ve had enough today. Enough of being rejected not only by those that matter to me, but also by those that don’t. I shouldn’t care, I shouldn’t give a fuck, but I do. I should really have learned by now that I am not important. I’m nobody in people’s lives, probably never was. But more importantly, and this is the most painful realisation, I’ve come to realise that today, at this time, I’ve really had enough of being smacked, punched, stamped on and shouted at. I’ve cannot accept today, being rejected by my son for the umpteenth time. It’s too hard, I can’t do it any more. My motto these days has been ‘Never Give Up’. But today I am this close to doing just that. I am down. I’m beaten and I’ve lost, again. There’s no way up, or forward it seems at the moment. Tiddles doesn’t interact with me, doesn’t really want anything to do with me and sadly, the gap is widening. He’s not the first. He certainly won’t be the last.

This is how I feel today, at this moment.

Tomorrow is a new day.

Let’s see what it brings…’

I was fed up and angry. Annoyed at what was happening in my life, not just with Tiddles but with everything and everybody. I get days like these, and it frustrates the hell out of me. I debated whether I should post it, and decided that I wouldn’t, but the other day I had had such a rotten day that I decided that I would post it with an explanation. I have days, as we all do when I wonder, ‘why am I bothering?’ ‘just what is the point of all of this?’ It’s a terrible feeling to get and it’s not the first time I have written about it I’m sure. But this was the first time when I really seriously thought I would tell people what I was really feeling. I was low.  Living with Luke – the play, had just had two of our dates cancelled due to a lack of ticket sales. I was annoyed about it, and very very pissed off. I looked at my readership for these blogs, and the numbers have gradually dwindled down. Maybe it’s time to stop writing about it all? Maybe there is only so much of Tiddles and the Old Man that people want to read about?

But then I thought again.  Just who am I writing it for?  It was supposed to be about how I felt, wasn’t it?  It was supposed to be the good and the bad, the happy and the sad.  So what if nobody else reads them?  I’m not getting paid for this, I can stop any time I want to.

So that’s what I’m doing.  I’m writing for myself and if anybody else wants to read them, then great.  It has always been about me and Tiddles and after some down times – which I am sure will not be the last time that happens either – I’m doing the thing that I enjoy the most and that’s writing, whatever the subject is about.

We were talking the other day, TCMH and I, in one of the rare times that I decided to not get up early and exercise. We were talking about the past, the present and the future.

I’m trapped in the past.  My destiny and purpose have been decided for me by my past actions, I’ve long thought.  What happened 5, 10, 15 years ago, I’m still holding onto and refuse to forgive myself for and let it go.  It’s what has made me, me.

Utter rubbish, of course.

We talked about Tiddles.  Were he still at school, he would’ve left last week.  I was a bit sad about that.  I happened to be at his old school last week and saw the kids who were his peers all walking round with their once white shirts festooned with autographs and messages from staff and friends alike, and I wished that he could’ve been amongst it all.

Did Tiddles care?  He couldn’t give a f…

As far as he was concerned, school was long ago.  2 years ago in fact.  Not that he has any concept of time.

Does he miss it?  Nope.

Does he think about it?

Nope.

Is he happy?

Absolutely.  He lives completely in the present moment.  The thing that happened 5 minutes ago, doesn’t bother him any more.  The thing that’s happening RIGHT NOW, is what’s important to him, be it food, rewinding his programme of choice, or deciding that now is the time to run around the house and jump.  The future doesn’t matter to him.  It’ll get here when it gets here.

As for the past…I have a lot to learn from this beautiful boy.

That thing that can and will break your heart, can also lead you to a better and truer life, if you’ll let it.

Tiddles is that thing.  He may only tolerate me, but I think he knows deep down that he is here to teach me so much more about myself, than I will ever discover on my own.  It may be a difficult journey, but let’s see anyway…

Tomorrow is a new day.

Let’s see what it brings…

Living with Luke 57

I read an interesting article online the other day about the masks some of us wear. Different masks for different environments. It went on to say that we should be looking to drop the masks and learn to live as ourselves, authentically. It’s a weird thing, or it could be a funny thing. Or even a weird, funny thing, but whatever thing it is, the people who probably live the most authentic lives are autistic people. Tiddles doesn’t have a mask, doesn’t need one. He’s painfully authentic sometimes and shows his genuine feelings on every situation that he encounters. There isn’t any way that he could hide his emotions about what he may be thinking or what he could be feeling, and nor would he want to. Well, he wouldn’t know how to for starters. Such is his life here that possibly, he feels that he can be the most genuine he can be in his own world. Nothing to prove, no ego to stoke, he and many others like him are a prime example of ‘authentic’ living. 

Does that mean though that they see us for who we truly are? 

Is that the reason for his apparent dislike of me? And sometimes not just me, either. But mostly it is and there  are times when he can’t even look at me. Sometimes he’ll put his hand up in front of his face as a sort of barrier, the way I used to when I watched Dr Who in the seventies. I could still hear what was going on, but I didn’t want to see the scary bits, so I’d put my hand up so my eyeline to the tv was blocked. And that’s what Tiddles does. He blocks out the ‘scary’ bit. 

Which is me. 

And with his earphones in he has the added advantage of blocking out the majority of my voice too. So in effect, I’ve just compared myself to a Dalek/Silurian/Ice Warrior/Cyberman/Giant Rat/Wyrryn/Brain of Morbius/Any other DW monster…Why couldn’t it have been The Master? 

It was my birthday recently, and I have mentioned this elsewhere, but I received my card from my family in the morning – one card, three messages.

The first, from TCMH began,
‘Happy birthday, gorgeous…’

The second, from The Eldest Child began,
‘To Daddy, the best dad in the world…’

The third, from Tiddles, began,
‘To Steve…’

You know how it is when you find something funny initially and then the reality sets in? That was it…
‘Hahahah…oh…bugger…’

So, the other day was also World Autism Awareness Day, or as we know it in our house, Thursday. I reflected on this as I was giving Luke his morning supplements. When I first started writing about Tiddles and I, I spoke about how he doesn’t say good morning, instead telling me to go away. That was 2 years ago now, and has anything changed? Well, no. Not really. It’s now become accepted that this is how he greets me, if telling me to go away can be classed as a greeting. 

But many things have changed in 2 years. It’s inevitable I suppose. As I write this today, I’m preparing to play my last game of competitive football after 40 years of playing and over 1000 games. I’ll no longer be ‘risking injury diving at the studded boots of Sunday morning footballers on bone dry pitches’. To me it’s a big thing. Football has always been a huge part of my life, but I’m going to walk away after today once I’ve burnt my gloves and been carried shoulder high by the opposing team, and that’ll be it. A big thing that has pretty much been an obsession of sorts – “sorry, can’t make that, I’m playing football…” – will be done with for good. There is of course, going back to Dr. Who, a small part of me that is going to be like David Tennant before he regenerated into Matt Smith – “I don’t want to go!” – but go he did and go I will too. 

So what’s been the point of this blog today? 

All things will pass? Nothing lasts forever? 

How about, if you find something you love, then you’ll deal with the heartache, heartbreak, bruises as well as the incredible but all too brief highs…

Tiddles…

Follow

Get every new post delivered to your Inbox.

Join 1,064 other followers