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…
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.
Watch this space…
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…
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.
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…
This is the story of a man who used to have loads of mates. They would hang out together and generally have the best fun.
Then one day, the mans youngest son was diagnosed with Autism and the man was devastated and heartbroken. But he still had his mates.
However, as the boy grew up, the man, who it has to be said that despite appearances was very shy, withdrew more and more from public and social engagements. He withdrew so much, that he realised too late that he had lost his mates, and they were now just his friends.
The man had taken the decision to try and be a dad to his remote son and as a consequence now had nobody to confide in, apart from his current wife. But she was also trying to be the best mum and so the man tried not to burden her with his fears or his heartbreak. Instead he bottled it up over the years and did his best to provide for his family whilst trying repeatedly to connect with his lost little boy.
The point of this is to stress that this whole situation was in no way the fault of anybody’s but the mans. His shyness may have played a big role in his choice, in that he always found it difficult to ask for help, or to even ask if people wished to spend time with him. But whatever the reasons, the choice was his.
As Tiddles has gotten older and bigger, I have felt that it has become more of a necessity for me to be here. TCMH may disagree with me on this, but I feel it is my role to be here for him and not to leave the care of him totally to her.
Don’t get me wrong, I have loads of friends. I have people that I can spend time talking to, usually have a laugh with and generally talk absolute rubbish with. But my ‘mates’…? They’ve long since given up on me and for that I apologise. I did nothing to prolong our ‘mateyness’ because I felt I needed to be looking after Tiddles more as he got older.
Tiddles doesn’t need mates, or even friends. He would have no concept of what the hell I was talking about with this blog. Try and explain friendship to him and I would probably get a whack, a quote from ‘Thomas the Tank Engine’, and then he would be gone again.
If anything, this is a call out to The Eldest Child. I know full well that he feels that he has to take care of Tiddles as well, but as I stressed to him over Christmas, he is not responsible for Tiddles’ care. He MUST go out and enjoy his own life, follow his OWN path, be his OWN man, but most importantly of all, leave the care of his brother to us, to me. He is his fathers son, with all the shyness and lack of belief in himself that I have managed to pass onto him. But he must, must make sure that he keeps his mates close.
Before it’s too late…
But to all my mates, I am truly sorry I lost you. I guess as a dad to Tiddles, I can’t have both.
But always know that I love you all.
For the past 5 or 6 years, we’ve gained a thing, a tradition, if you like, that we would go ice skating on Christmas Eve. We would book tickets for the local large garden centre that would have an ice rink installed every December and we would go in the afternoon, just as the sun was beginning to set and the whole thing would be magical and just add to our ever growing anticipation of the upcoming event. And so it was this year that the tickets were duly booked and we all hoped that it would be a lovely magical afternoon and not the rain slashed (but still magical) endurance test that it had been one year.
A few days before, Tiddles was sitting with TCMH, when he turned and looked at her and said;
“No ice skating.”
“Why?” Asked TCMH.
“I don’t like ice skating…” Came the reply, amazingly. As TCMH said later when she told me, it was as clear as anything and a moment that was, in it’s own way, magical.
We went anyway…
Wellllll, the tickets had already been paid for, and it was Christmas Eve. Now over the years, my experiences of ice skating with Tiddles had all been wonderful, magical, exciting and painful. Painful because I had to support Tiny Tiddles, the boy who wouldn’t skate and by the end of the session my back would be screaming from having to bend and carry the practically dead weight of my little monkey boy.
This year however, marked another sad passing, when I realised that I no longer had to bend to support my young gorilla. He had grown so much in the last year that I could stand up straight as I skated round the rink, which was great for my back, but bad for my heart. My little boy was growing up and I didn’t realise just how much until that lovely afternoon. I thought about just how much he had grown for a couple of laps of the ice, my reverie only broken as we slowly knocked over a little girl – well she DID stop right in front of us. Witnesses stated that it was probably the slowest accident they had ever seen…
But still as much as I loved the afternoon, my boy was growing up-again.
With the session over we returned to the car, Tiddles and I, whilst TCMH and The Eldest Child did a little shopping. I turned to Tiddles in the car and said;
“Do you know what day it is today?”
“Christmas Eve.” Said Tiddles.
“It certainly is!” I said, “And its very exciting isn’t it?” A nod of the head and a shaking of the fists in a copy of what I was doing. ”Tell me how excited you are…”
And in the flattest, quietest, most monotone voice, he murmured,
Now indulge me.
In these days the role of the father seems to get a very bad press. The actual role of the dad seems to be decreasing in importance which is very sad. Many of my oldest friends are now fathers themselves…so here goes.
Dave Hannam (my dad), Pete Robins (father-in-law), Ants Parsley, Paul Johnson, Jody Randall, Andy Prangnell, Hatstand, Youngy, Dame Dickie Parsley, Danny, my brothers Scott and Simon, brothers-in-law Steve and Dave, Lee’s Pacey and Ellaway, Kyle, Ian Stacey, David Stacey (no relation), Pat, Stuie Miller, Gary, Barry, Rob O, Chris D, Micky Fish, Harv, Dan James, Steve King, Kendal, Mouldsy, Reg Peachy, Eddie the Quig, Brett and anybody else I may have missed.
Lads…we are all good dads, in fact we are all BRILLIANT dads! (Some are more brilliant than others obviously. No names, but just follow my eyes…). We are all good dads in our own ways, and the challenges will never stop but we have made the decision to be fathers to our children whatever happens and for that I applaud you all.
And of course there are those that have taken on the mantle of stepdad or something close to it – Granty, Oz, Tony, brother Stu and others, I salute you too.
I didn’t expect a Christmas miracle this year with Tiddles. What I wanted was what I’ve always wanted and that was a father/son relationship with one of the most precious things I have in my life. I get flashes of the life we could’ve had and it gives me hope that maybe more of these moments are just around the corner. Which corner that may be, I don’t know, but I am forever hoping that it will be the next one. Or the one after that. Or maybe, just maybe, the one after that. But it will be one of these corners, one of these days. The point is to keep moving forward and looking for a bridge across to my beautiful little boys land. I know it’s there somewhere…
I started writing this before midnight on New Years Eve, and now it’s New Years Day.
Happy New Year to all you lovely people.
And as Tiny Tiddles was heard to observe;
This may well be the last post for 2013 and what an amazing 8 months its been since I started writing these blogs. I’ve seen the number of views for the posts top 100, then 500, 1000 and then 10,000, with the current total at over 14,000 views for the previous 31 ‘Tales of Tiddles’. Next year promises to be even more amazing with the ‘Living with Luke’ play hopefully going into rehearsal and then performances at venues in Colchester and Harlow and maybe elsewhere too.
On top of that, I will be looking into fundraising for the ‘Tiddles Fund’ (a working title) in order to raise money for his continuing multi-supplements that will hopefully rid him of the heavy metals that have been accumulated over the years and provide him with a new chapter in his little quiet life. To do this, I will probably be releasing a couple of stories to buy on Amazon, a Captain Square Jaw story and possibly another ‘fairy story’ about Tiddles. The money from which will go to buying said supplements…
That’s the plan anyway…
However, whilst all of this is all in the pipeline and very exciting, the one person for which this is all being done is completely oblivious to all of the attention and remains so. Tiddles has no idea just how much he is loved by people in this country and all over the world, people he has never met, and probably will never meet. From the 300-odd fans on the Facebook page, to the 50 countries who have read the LWL blogs, to the 50-odd followers on Twitter, those on Mumsnet, and the many wonderful people who have shared the posts religiously since they started, Tiddles has become loved by many many people, but he doesn’t even know it. He remains in his little Narnian world, not aware of the love washing over him with every story told about his adventures with The Old Man.
But when it all boils down to it, the message of the blogs remains the same. They are and remain to be about a father and his autistic son and the pain that this dad feels about the desperately widening gap between them. It’s not only the physical pain, but the mental and emotional as well. There are the funny tales, the sad tales, letters and genuine outpourings of grief about our situation, but hopefully the love this Old Man has for his Silverback gorilla son shines through it all because after all that’s why I started writing them in the first place, to tell people just how I feel about my little boy. Possibly some people have gotten a better understanding about ASD, or maybe how difficult it can be for a dad to live with a broken heart for a son who lives with him but may as well be 1000 miles away. Who knows? Whatever you get out of these posts, thanks for reading them.
So, a little chrismassy story to finish. PACT for Autism had their annual christmas party the other week and I was asked to play my favourite role of Father Christmas for the children. I turned up, fully Santa’d having driven down to the venue in the full red outfit, minus the beard. Making sure I was as inconspicuous as possible, (‘So what does Santa drive, children when he delivers your presents?’ ‘A black Peugeot 207 Santa!’), I walked into the party to be greeted with a chorus of excited cheers from the children who had witnessed my entrance. With lots of ‘Hello there!’ and ‘Ho, ho, ho!’ and ‘Is this where I sit?’ I greeted the excited masses and answered all of their questions, which ranged from ‘Who’s your favourite reindeer?’ to ‘When will you die?’. (That last one wasn’t as morbid as it sounds, and the answers I gave were ‘Donder’ and ‘Never’.)
So it came time to leave, (‘It’s time for Father Christmas to go back to the North Pole, children!’ ‘Hooray! Start up the Peugeot!’) and as I made my way out of the door, who should I see standing waiting for me but Tiddles who was Very Excited and practically leaping from one foot to the other as I walked up to him. I’d already seen him of course to give him his present, but now I was going to stand with him and he seemed to be very happy about this.
“Hello young man and what is your name?” Said I in my Santa voice number 2, which is for public speaking, as opposed to Santa voice number 1 which is for visitors to the grotto – it all gets very serious at this time of year.
“Luke Hannam.” Came the reply.
“And do you know who I am?” I asked as we posed for a photograph.
“Daddy…” Answered Tiddles.
Merry Christmas to all and to all a good night!