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Living with Luke 70

70…70 bloody blogs…70…sorry, I’m just digesting that number.  I get like this with every milestone that I reach, only because I can never accept that I’m still writing these and that they are still be read all over the world, (Bolivia, anybody?) but they are and I am. Onwards…

I wrote in my last blog, that I feel that I am a failure as a father to Tiddles. I had a number of responses to that, all of which were welcomed and accepted and whilst they didn’t change my perception of the relationship that we have – evidence of which has been painfully present in the last few weeks – it made me think about what it is that we actually DO have.  

It’s hard to define what we have these days, but only because it isn’t a normal relationship. But then, what is a ‘normal’ relationship between a late 40’s father and his 17 going on 18 year old son? 

If it’s anything like most stereotypical relationships, then he will be moody (check), spend a lot of time in his room (check), eat a lot (check), hardly talk to me (check), walk around with his headphones on (check) and want things bought for him (check). So, in effect, I have what could be deemed as a perfectly normal father/son relationship! 

So why isn’t that enough for me? I dont know. Most dad’s would probably be happy with that, but for me, its not enough. I think i feel cheated. It’s what prompted the last blog and certainly what inspired the blogs to be written in the first place, that sense of having lost something. 

And then I saw a video on the Facebook posted by a friend and featuring J K Rowling, who was talking about failure. Without failure, she would never have written some book about a child wizard or something, because she never would’ve reached the point of having nothing to lose. And whilst our situations are very different, the message is the same. I wrote last time about being a failure, at least in my eyes. BUT, I can also see that there is the possibility of success, however small those successes may be.

And I think that’s the important thing. I have many thoughts, ideas, projects that I want to pursue and try out, and I really don’t have anything to lose now, do I? I may not have the relationship that I want from Tiddles, but it is a relationship all the same. He may not like me, in fact I am convinced he doesn’t,  but every now and again, there is the odd flash of what could’ve been. That bridge, however fragile, reaches across from Narnia and he dashes over, gives me the briefest of hopes, before he dashes back and collapses the bridge.

But it is a hope. And it’s something to hold onto. The flickering of a candle at the end of a long dark tunnel. It’s there, but you really have to look for it and keep it in view, or it’ll be snuffed out. So, although I feel I have failed, I also feel that there is hope. Things may never improve between us, or may never get back to what we had before, but there is that candle, right there. 

And I can either stay where I am, or I can try and move towards it. It may, just may, be closer than I think. But I won’t know, if I don’t keep trying to get there. I’m going to lose sight of it now and again, but so long as I keep getting these little flashes of inspiration and hope, then I’ll have something to guide me towards my Quiet Prince.

I’ve got nothing to lose now, have I?

Living with Luke 69

I have failed a lot of people in my 48 years. Everybody has in one way or another, of course, but some people also have a million pounds. It’s just the ‘way it is’…

Of course, when you measure your ‘failure’ against other people’s, you inevitably come out ahead of some and behind with others. 

And of course there are different levels of failure. I once failed to look both ways at a Zebra crossing and was run over by a zebra, so in essence I failed with that joke. So failure, in its objective term, is relative. 

So I have failed as Tiddles’ dad. 

I’m not the father that I wanted to be to him. I wanted to be so much more. I realise that I’m echoing both our play, ‘Living with Luke’ and ‘Doctor Who’ here but again, that’s the way it is. 

I’ve failed him. 

It can be argued that I haven’t failed him in that I’m still around for him, but what does that mean to him

It means absolutely nothing. He doesn’t ever think, 

“I wonder if dad would like to do this with me one day/go to that place/watch this thing…”

His thought process where I am concerned goes something like,

“What does he want? He’s in my way. I don’t want to say anything to him. Go away, go away. What’s he saying? What’s he saying? He’s in my way. He’s talking to me. I’ll hit him…”

I’m writing this in the morning, having endured another poor nights sleep, but before we went to bed last night he punched me in the stomach both on his way to the bathroom and coming out of it. 

I’m not the dad I wanted to be to him. I’m a very poor copy of somebody else. A scary dad. A dad who is tolerated and dealt with, with as little contact as possible. 

I’m not Luke’s dad, I’m Tiddles dad. 

I’m the dad who’s not actually a dad, more of an interference. Like a mote in your eye, floating around your vision. It’s always there, but it’s annoying. 

And that’s me. 

So I’ve failed as a dad. His dad. And it’s not something I can fix with hard work and a positive mental attitude, because the damage is done. It really is set in stone. 

But, even though I know this can never be fixed, I keep going. I’ve given up on so many things in my life that I’ve deemed to be failures, because it was the easy thing to do. But this…I just can’t let this one go. 

I’m tired, fed up, currently demotivated by a series of things, so this would be very easy to pass off as another tick in the Hannam loss box. 

But I just can’t. It’s a one way street, certainly. But I really don’t want to miss a thing. 

So there you have it. My failure as a father to my son, Luke. And how I’m trying to be a father to Tiddles. 

Cue Aerosmith…

Living with Luke 68

Isn’t it weird Tiddles, this life? 
This week, I’m going to the wedding of Shane (who plays the Ref and other roles in Living with Luke – The Play) and his lovely lady Jazz. I wish them nothing but happiness and joy and all that they wish for. It took me back, Tiddles, to when your mum, TCMH and I were married, nearly 23 years ago BC (before children). We had big dreams. TCMH was going to be a jobbing singer and I was going to be a working actor. Nothing huge, just regular work that would keep us comfortable. I’d decided not to pursue my budding wrestling career to follow the acting dream. I toyed with writing when The Eldest Child came along. Children’s stories mainly. Nothing came of it. We moved into our present house, and then you came along and everything changed. I had an idea for a pirate story about brothers but that never came to anything either. The dreams of becoming an actor faded as bills needed paying and regular work hooked it’s soul-destroying, depressive claws into me. 

Then the hammer blow. And suddenly, I’m the father of an Autistic boy. 
The years pass and I write a book about a comedy pirate. I start wrestling again part time and I meet Paul Tyrrell – wrestling legend. After a couple of years though, I stop wrestling again for various reasons. I’m noticing that you are starting to be a little less tolerant of me, to the point where you are hitting me for whatever reason. It’s fine. I tell everyone it’s ok. 

But it’s not ok. It’s tearing me apart inside. 

And then the second hammer falls. And now you’re an autistic boy with epilepsy. The hitting increases, as does the rejections. It’s fine, I tell everyone. It’s ok. 

But it’s not fine, it’s not ok. My boy, my beautiful little baby, doesn’t want me in his life. 
So I start writing about it. All of it. All the stuff that was inside is now coming out. Some good, some bad. Funny-yes, but also some very sad, heartbreaking memories that has me blinking away tears as I write it down. 

And then people started reading it. And more people and more in different countries. And then through Shane, Paul Davies comes along and wants to make a play about it? And then I meet Ben, who turns out to be a brilliant StageSon, and then we need a wrestler and Paul Tyrrell re-enters and becomes The Autistic Shadow. And I meet Liz and Neville and Anna Kennedy. And I write a book about you and I. And suddenly, this weekend, I’m going to the wedding of The Ref and his lady. 

And all because, Tiddles, you were autistic. I would never have met these people were it not for you. The opportunities to reach so many people, touched in whatever way by the Autistic spectrum have all been because of you. It sounds odd to thank you for it, because I want to be your dad. I want to be the father to you that you deserve, and not the father that you continue to endure and tolerate. But without you, and all the heartbreak that your condition has caused me, I wouldn’t be where I am today. 

I’m right where life needs me to be, my beautiful, wonderful, distant son. 

Thanks Luke. 

Love Dad X

Living with Luke 67

Sometimes he does talk to me. 

Well, not so much talk, but reply to something I’ve said in a way that could be classed as talking and it also sometimes turns into something insightful from my little autistic philosopher. 

I’m a man – you’ve probably noticed this – and as a man it is an unwritten law, like barbecues, cutting the grass and making the tea for TCMH in the morning, that we control the TV remotes. We’ve studied them, we know which buttons do what and what shortcuts to take to get us to which channel quickly. Why? Because TCMH, by her own admission I might add, isn’t great with technology-if by technology we mean a many buttoned box to point at a TV that saves us getting up off our lazy arses and walking all of a metre to change the channel. So she surrenders the remotes to me. So sayeth the Law…

But I find that my position as the First Lord of the Doobery-Whatsit, Ruler Supreme of the TiVo, is now being usurped by You-Know-Who. He sits there – and for those who have Tivo’s know all about this – setting series link after series link, recording things that he NEVER watches and never will watch! To date we have over 700 series links and Wishlist searches for so much stuff that, if it recorded it all, would probably take up the space of 10 Tivo’s and he still would keep adding to it.  I spend at least an hour per week deleting things like ‘Nothing to Declare – Australia’, Polish Radio, French news programmes and bizarrely, spooky tales from India. I not only have to delete them but also the Star Trek, Teletubbies, Postman Pat, Ben & Holly, Peppa Pig and Thomas the Tank Engine episodes not only from the programme list but ALSO from the deleted file, because otherwise he’ll recover them and put them back. And why do I delete them? Cos he’s already got them on DVD!!

But the other day after work, I wanted to sit down for a while and watch something mindless for a bit – Tipping Point probably. (If we ever go to Walton pier now, I like to answer a question before I drop my 2p into the machine. I do have to stop myself from saying, “Drop zone 3 please Ben…” though).

ANYWAY…I leaned down to Tiddles and held my hand out for the remote control. He, amazingly, passed it over without a shout or a refusal – one of the rare times that he has done so. Feeling quite pleased with myself and him, I thanked him and turned away. 

“Not for long…” He said. And he was right of course, because we never really have anything for long, do we? Everything is fleeting, and moments between us even more so. 

Where his phrase came from, I do not know. Whether it was directed at me, I do not know. What I did know was that it was totally in the context of our exchange. It was both funny and amazing. Mainly because these micro moments are just so rare. It’s a brief glimpse of another world, another timeline, where the teenage Luke is moody and non-commital. Where I would be accepting of the grunts and one word answers. But in my world – this timeline, I crave that monosyllabic connection. Any link that we could have that would, just for the briefest of times bring us together. I need them. And I’ll take them wherever and whenever they happen. 

Gratefully…but they’ll always be…

‘Not for long…’

Living with Luke 66

It’s funny where the inspiration for some of these blogs comes from. I’m sitting in the reception of a Holiday Inn, in Brentwood awaiting the start of a Speed Awareness course as a result of a speeding fine back in February. I’m not happy about it, but let’s get it over with. But whilst I’m waiting for it to begin, I’ve started writing this post and it’s all because of music.

Music, specifically my type of music, plays a big part in my life. It’s very rare that I drive anywhere without music on. Truth is, I’m not a huge talker in the car. If I’m not driving, I tend to feel a bit sick, so much prefer to close my eyes to combat the nausea. But most of the time, I’m watching the road…

The point of this post -eventually – is that I often wonder what Tiddles hears when he’s in the car with me. TCMH listens to Radio 2 when she’s driving and Tiddles is fine with that. I’ll put on my music and he is putting his hands over his ears, so I have to turn it down or off.

Now I know what you’re thinking. My music is crap. It’s not…I love it and that’s all that’s important, right? One man’s Rudimental is another man’s Birdie Song, I get that.

What I don’t get is what Tiddles doesn’t like. I think it’s the volume, so I turn it down so it’s not so intrusive in the back of the car for him. But then the other night, (we’ve moved on in time here, stay with me now, the course is finished.) he had his iPad, his computer, his DVD player AND his iPod all on, AND he was singing – loudly. And just what was he singing? A song called ‘Come and follow me’. Not heard of it? I’m not surprised, because it’s the end song from the 1986 ‘classic’ film ‘Short Circuit’…and Tiddles loves it. 

Of all the songs in the world, he’s latched onto that one. Now, to my ears, it’s awful, and I love most 80’s music. But to Tiddles, well who knows? Like I said…it’s the difference between Eric Clapton and Eric Morecombe…

But it makes him happy. Many’s the time he has sung something at the top of his voice, completely uninhibited, and oblivious of those around him. Normal for us, a bit disturbing for the rest of the mourners. (I’m kidding of course. He only goes to the Wake.)

But, as I’ve written about in ‘Life Lessons from Living with Luke’, he does these things without any fear. He, among all of us, is free. For the rest of us, it’s a slow, slow process to re-learn what we knew as children. He knows what he wants, what he wants to do and who he wants to spend time with. Sometimes, rarely, it’s me. And that’s the nature of our relationship at present. There was a period of time last week when he seemed extremely affectionate. Not any more tactile, just paying more attention to being near me it seemed. That faded, as I knew it would and the kicking of my ankles, the smacks and the stamping on my feet returned. Normal service was restored. But there was that point when it did seem that he was my little boy once again.  It was lovely, wonderful and welcome, but as ever it was all too quickly gone. My Quiet Prince was gone again. 

And then, all of a sudden, another Prince was gone. 

It’s really weird whilst writing a blog about music that one of your  musical heroes dies unexpectedly. I wasn’t so upset about Bowie, or Lemmy, but I was really knocked by this. I loved Prince and his music throughout the 80’s and part of the 90’s. 15 albums that pretty much shaped my teenage and early twenties, along with a few friends who were also fans. Admittedly I lost interest in his musical output from about 1995 onwards, but still I would revisit a lot of his brilliant earlier stuff, noting when he did release a new album.

And now he’s gone. He touched my life in a way that I’ll never be able to thank him for and instead, Tiddles will have to put up with more of my music. And much like Prince, Tiddles will never know or even understand the way he has touched my life. 

It’s a struggle. It always has been. But much like everything that you want, if it was easy to achieve then everyone would do it. 

So…is my music crap? You decide. 

“Dearly beloved, we are gathered here today to get through this thing called life…”

Living with Luke 65

Training. A word with many meanings, most of them involving sweat, tears and my lungs demanding to be let out of my chest. I used to train 3 times a week and play football on a Sunday. Then I trained 5 times a week, football on a Sunday. Then I stopped playing football and so now I train or do some form of physical exercise between 6-8 times a week. I should be easing down now, shouldn’t I? Sitting on my front step, with my long pipe, swearing at people passing by like an old sailor. But I’m not. Instead I get up at 5.30 (6.00 during the holidays – lay in!) and put myself through some form of torture for anything up to an hour in an effort to maintain the body of a Greek god (Hermaphrodite…which one was he again?). That may not sound a lot to some people, but it’s more than enough for me each day. And it is a torture. Back injuries sustained through bad falls playing football mean that it really is difficult sometimes to muster up the motivation. I don’t enjoy training, I never have done. I’ve never experienced that ‘runners high’ or rush of endorphins or Dolphins or Mighty Morphin Power Rangers – whatever it’s called – that I keep hearing about from all the other people who train. I’m with Muhammad Ali on that score who said amongst other things, 

“Put in the work”

“I hated every minute of training, but I said, ‘Don’t quit. Suffer now and live the rest of your life as a champion!'”

Now I don’t in any way consider myself to be a champion, so I substitute that word for father. And that’s what this chapter is about. I’m training every day to try and make sure that I am taking care of myself as best I can to look after Tiddles, now and far into the future. 

With that in mind, I posted this on my FB page the other day…

What ever age you live to Tiddles, I’ll live one day longer, so I can be there to look after you, always…

It’s why I do it. Oh there’s a certain amount of ego involved as well – this blog wouldn’t exist if there wasn’t. I don’t want to be the stereotype late forties male. The sum of my parts have been thrown together to form this mass of humanity and masculinity. It’s not perfect and sometimes it’s not always very nice to be around. I beat myself up when I do or say something wrong. And if it’s to do with Tiddles then it’s worse, because he cannot understand me trying to make it right with him. And so we drift a bit further apart. 

So I train. To get stronger, to BE stronger mentally, physically and maybe even emotionally. I jump, I stretch, I lift, I pull, I push…but underneath it all, I want to love and be loved. All the training in the world cannot give that to me. I have to give love to hopefully one day be loved. 

And just sometimes I am. Maybe not for a day, sometimes not even for a minute. But some ‘time’.

The heart is a muscle, it needs exercising just like anything if you want it to work properly. But that isn’t just cardiovascular exercise. It’s as much emotional exercise as anything else. We all have our passions, our ‘hearts desire’, something that makes us feel alive. We need that as much as we need physical exercise. But our heart is one of the only muscles that can be ‘broken’. You can’t break a bicep, a quadricep or a brain. You can tear a bicep, or damage a brain, but you break a heart. Mine has been broken for a long while now, repeatedly over the years since Tiddles was diagnosed. It starts to repair itself and then something else will happen that breaks it again. But, like getting up and training everyday, I keep picking up the pieces and put it all together again. 

Because I’m Luke’s dad. I’m not perfect, I’m not always nice and I’m certainly not a champion. But I want to give myself a shot at being there for him for as long as is humanly possible. 

“So get up you sonovabitch…”

Tiddles may not love me, but he does show me a glimpse of what love could be.  And for that, he’s going to have to put up with me. 


“Get up…”

Living with Luke 64

Hello. My name is Danson Thunderbolt and I’m addicted to…

I’ve not had a lot to say lately…actually, that’s not quite true – I’ve had plenty to say, and have said it as well. What I mean is that I’ve not wanted to say much here. Not for any other reason except that I was wondering if anyone was interested anymore. It’s been about 6 months since the last post and now this one. It may well be another 6 months before the next one, if there is a ‘next one’. 

So, why now?

Today is my 48th birthday and I’ve never felt so old as I do today. I’ve never BEEN so old as I am today either, and tomorrow I’ll be even older than I am today and be a step closer to the grave. A depressing thought? Yep…but that’s par for the course…

I noticed a couple of things the other day, which were, whilst probably not all that important in the grand scheme of things, fairly earth shattering to me and forced me to sit down and think about them. 
And it’s this…I became aware, slowly, that Tiddles doesn’t actually cry much. Hardly ever in fact. Except when he’s upset, and then it’s usually me that he’s upset with and so he tends to lash out at me whilst he’s crying. This has become the norm, it’s acceptable-accepted behaviour in our house. Readers of these blogs will know that I would rather it be me he smacks or bites than anybody else. And that’s…well, acceptable. 

However, as with many things in life, the short term plans or ideas have a habit of becoming long term problems. This is what I discovered the other day. What has happened, is that Tiddles’ lack of emotion, the fact that he hardly ever hurts himself and as a result never seems to ‘need’ me has, I’ve suddenly found…numbed me. 

That is the wrong word, but I’m struggling to find the correct one. 

Rather than becoming de-sensitised, I am if anything, feeling more sensitive as we have all gotten older. Luke’s distance from me has left me with an ever deepening well of unchecked emotions that are being shored up with the increasingly flimsiest of supports. 

So I joke around. I make funny comments. I piss about and try to be ‘funny’. But I can have a nasty temper and a very short fuse which is being kept under increasingly difficult control as I struggle to deal with being ‘Dad’ and other people sadly, can feel the brunt of emotions that remain unchecked and unchallenged. The pressure is building. 
For example…
I work in a school. I’m not a teacher. Nor would I want to be. Those guys work harder than anybody ever gives them credit for and deserve our admiration. One day just the other week, I was in class and from the class next to mine, we could all hear a child crying. Now I couldn’t tell if it was a boy or a girl, but they were sobbing about something and I do mean sobbing. They were so upset. All I wanted to do, was to go to that child, hold them tightly, and tell them that it was going to be alright. 

And I wanted to cry with them. 
Even now, the thought of it, the memory, is causing me to well up. Which is unfortunate because, as I said, I have no outlet. Tiddles doesn’t need me, and that hurts. The slow, drawn out pain of his gradual separation has in effect, weakened the walls of my ‘Fatherlyness’ (not a real word), and has turned me into a man who will potentially cry at the drop of a hat…I daren’t even watch any ‘Rocky’ films as they could be devastating, and I know what happens! But this is now the closest I will come to breaking down. I have a feeling that our performance of LWL at the end of April could potentially be the most real it’s ever been!

But the worst thing, the worst thing is, is that it’s not going to get better, but it could get worse, if it hasn’t already. 

‘Who’s birthday is it today, Luke?’ I asked this morning to the figure peering out from under his duvet. No reply. ‘Who’s birthday is it?’ I asked again. 

‘Daddy Pig…’ he replied. 

I looked at his calendar. Three dates had something written on them. None of which were my birthday!

And it’s difficult to get inside his thoughts. The passage to Narnia has long been, maybe not lost, but certainly mislaid. 

Years ago, myself and TCMH attended a week long conference/training session for an American idea called The Son-Rise program. During the week as one of the exercises, we were invited to write a letter to our children. I then volunteered to read mine out in front of 300+ parents. In it I wrote to Tiddles that I would do my absolute best to find the bridge between our land and Narnia. Something I’m still searching for to this day. The reality of it is that I may never find it, but do I really owe it to Tiddles to stop trying? To give up the search for the Holy Grail of fatherhood for him? He doesn’t care less if I give up, but what he does need, whether he knows it or not, is a Dad who is strong for him, emotionally as well as physically. And that may mean I need to be more emotional in my everyday dealings, whether I like it or not…

Hello, my name is Steve…

Watch this space…