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…’
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…”
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.
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.
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…
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.
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,
So. Non-verbal? Yes in a sense, when he’s (not) talking to us.
After all, video piracy is a crime. Do not accept it…
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.