Living with Luke 1

I haven’t read many if any posts or even books about what it’s like to live with an Autistic child which were written from the dad’s POV.  Many mum’s have written of their experiences and I’ve often thought, why not the dad?  Sometimes of course, the dad is not around, having buggered off for whatever reason, and having wanted to write a blog for a while but not having anything to blog about, here goes.  It could all be stream of conscious/train of thought/load of bollocks for all I know, but unless anybody reads it, it won’t make any difference.

So, the history. Luke was born in October 1998, healthy and happy, with 2 year older brother Jake eager to have a younger brother.  Everything proceeded as normal for the first 18 months, Luke making all the usual progressions, crawling, walking, and babbling.  It was only a matter of time before he would start talking, we thought.  Then almost overnight, something happened.  Ive read accounts of parents, mums mostly again, that have said it was as if somebody had broken in during the night and replaced their baby with an almost identical replacement, and that’s almost what happened with Luke.  He went from being a happy, babbling, attentive baby to…well almost completely the opposite.  He was still happy, after a fashion, but he wasn’t so responsive to sounds, like his own name for instance, whilst the babbling disappeared. ‘Nothing to worry about.’ we thought…late developer, said everyone else. We agreed.  No cause for alarm.  Why should there be?  We were all healthy, it surely would follow that he was too.  Life carried on.  After a few months, we were concerned that he may have hearing problems.  He wasn’t responding to his name, nor was he looking round at external noises like buses going past.  We got his hearing checked.  Nope, he’s fine, they said. Oh, ok.  Nothing to worry about then.  And then, whilst we were over at the grandparents in Basildon, my sister-in-law who works with children with special needs, mainly deafness, said to us, ‘Have you had Luke checked out for Aspergers?’ ‘What’s that?’ ‘It’s a form of Autism.’ ‘Autism?  Like Rain Man?’ ‘Yes, but this is different from that.  It might be an idea?’

The appointment was made.  And then another appointment was made with a specialist.  His diagnosis?

‘Well, I don’t want to stick my neck out and say that it definitely is, but I think he may be Autistic…’  Luke was 2 and a half.

BOOM!

(What was that? 

That was the sound of your world dropping out from under you sir.

Jesus christ!)

‘So will he recover?’

‘It’s usually considered to be a life long condition without any cure.’

BANG!

(What the hell was THAT?

THAT sir was all the hopes and dreams you had for your son disappearing over the horizon in a cloud of smoke.

Ahhh, right. I did wonder.

So what are you going to do now?

One step at a time, eh?)

So there we were, left to it by a well meaning, but ultimately useless specialist.  No counselling like many terminal patients might get upon hearing the news of their impending death sentence. No support, and no idea what to do next.  It was like being marooned.

We both come from big families and so the news of this hit everybody hard, but everybody loved Luke, as we did, and their responses were all the same. 

‘Get out and never darken our door again!’  (That of course is a joke.  What they actually said was…)

‘He’s Luke, we still love him.  What can we do to help?’

People have often asked me what its like to have an autistic son.  The best I can come up with is that it’s like living with a cat and a monkey rolled into one.  Cats come and go as they please, they do pretty much what they want to do, and if you try and train them, they’ll look at you as if to say, ‘Sod off, numbnuts…You don’t seem to realise who’s in charge here…’ Now combine that with a monkey that jumps around pretty much all day chattering and shrieking and you’ve got a better idea of what it’s like living with Tiddles the Orangutan, I mean Luke James Hannam.

One step at a time, eh?