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Living with Luke 1

April 20, 2013

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?

 

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7 Comments
  1. This sounds oh-so-familiar, except my son’s name is Brian.

  2. Aidan permalink

    My son “Luke” is 4 tomorrow. He was diagnosed with ASD when he was 3. I can definitely relate to this. It’s nice to hear from another Dad.

  3. Julie Bruno permalink

    Your description about the specialist sounds so familiar to my own experience. Liv was diagnosed this summer although I did not need a shrink to tell me what I’d already lived with for 13 years i.e. the maverick behaviour, school refuser, bullied from nursery school because she was an easy target & ultimate self harmer after we lost my father last November.

    We have since had to visit Cambs Adult Mental Health as at one point after Xmas she was threatening to commit suicide & claimed that “meds” were the only thing that would help her. Turns out she had been communing with 17/18 yr old emo self harmers on tumblr who were sowing the seeds in her mind. She is an excellent writer & if you spoke to her on a forum you would believe she was 18 as her vocab is impressive. Unfortunately her mental age is closer to a 10 yr old & hence the dichotomy in her personality.

    The specialist who pronounced the label which the school so desperately required in order to gain funding for her support requirements, said exactly the same to me. “There is no cure for Aspbergers Mrs Bruno. It’s just a case of developing management strategies to deal with the behaviour”. Yes I think that after 13 years I may well have sussed that one thanks. She then scribbled down the website address of the national autistic society proclaiming that I might find it useful.

    I might also find it useful if someone was to offer me some respite care from dealing with this little time bomb of a child. The school have subsequently informed me that she won’t necessarily get an educational statement of needs, that the government are in the process of lumping Aspbergers back in the same category as autism when everyone who works in special needs as I do with students, knows there are quite radical differences between the two.

    I mentor students with Aspbergers & so know that not only do they need help with their time management but also sometimes just require the reassurance that they lack by misreading social nuances in communication. They also get tired from sensual overload & that is in an environment which is far more conducive to learning than the hustle & bustle of ebullient 14 yr olds. Although saying that some of the students behave just like 14 yr olds.

    I have today reminded the SENCO who has made no contact with me since her diagnosis in September that despite the fact they can now file their risk assessments on the suicide threats away for the time being, she is still struggling & requires support!

    This morning she is happily up in her bedroom after a fight which I allowed her to win about hating P.E. because she’s dyspraxic, cookery for the same reason & “maffs” because she’s in the duffer’s class where the noise level & bad behaviour proves too much for her to concentrate so even if she was motivated to understand the complexities of the mathematical world she really hasn’t got a hope in hell in that class. Bit of a Catch 22 situation which we resolved in her big sister’s case by paying a private tutor to coach her through her GCSE maths.

    I allowed her to win the fight this a.m. because my lovely doctor has signed me off work for a week with anxiety as I’ve been endeavouring to deal with the aspie, work & project managing the emptying of my father’s bungalow in Norfolk 70 miles away on a road that is being dug up to finish the last section of duel carriageway between Cambs & Norfolk. Never quite sure which end of the A11 I will be at right now. What I do know is that my doc who has a child with severe learning & developmental difficulties is empathetic to the stress I’m under. He said like Confucius “You can juggle with 3 balls but when someone throws you a 4th, you drop the lot.” He has removed the 4th ball so this morning when she was having a full aspie flip about the injustices of Monday’s school timetable, instead of getting angry about the fact that I needed her on that bus so that I could get to work I just shrugged & said “Fine. Stay at home with me then.” Her face became that of the Cheshire cat in Alice & she trotted off back to her room with a cup of tea & toast.

    • A very frustrating time for all then. Sounds like a week off work could be a blessing in disguise for you to rest and recover without the added stress of work piling on top of you. Take care.

      • Julie Bruno permalink

        Yes Xmas came early to the Bruno household in the form of a very empathetic doc who knows what it’s like trying to juggle too many plates. : ) Today Kitty & I are chilling in our pj’s instead of wrestling with road rage drivers stuck in Cambs traffic jams or deaf students with anger management issues. : )

  4. Rob Dymott permalink

    As a dad I can totally empathise and I look forward to reading more of your blogs
    Rob Dymott

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