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Living with Luke 8

May 15, 2013

So…

As I am writing this, Tiddles is walking round and round in circles, through the living room, round to the kitchen, through the conservatory and back into the living room, pushing a broom.  He’s not sweeping, he’s just pushing a broom.  And he’s watching the Teletubbies on YouTube, whilst pushing a broom, going round and round in circles.

 “Luke, what are you doing?” I ask.  He stops to look at me, briefly making eye contact, but managing to convey in that briefest of glances, ‘Can’t you see I’m BUSY?’ before resuming his broom pushing circumnavigation.

Welcome to the wonderful world of autistic behaviour…

Another story.

We went to my brother-in-law’s 50th birthday party a few years ago.  I and The Eldest Child had been asked to perform a comedy sketch which went down well with the assembled guests, whilst TCMH did what she does best and sang a couple of songs.

We had also prepared a little surprise for Dave, my brother-in-law and Tiddles’ uncle – one and the same person, you understand –  and when the time came we brought Tiddles up to the front, sat him on a stool, gave him a microphone and started the backing track for ‘You Got a Friend In Me’ from Toy Story, which Tiddles proceeded to sing all the way through, word perfect and in tune, much to the delight of everybody in attendance and especially my brother-in-law, who was in tears.

The song ended, everybody cheered and Dave came forward to give Tiddles a richly deserved hug.  Tiddles wasn’t finished though.  He realised that he suddenly had a microphone which made his voice louder.  He had something to say.

“I would just like to say,” He began, and everybody paused, “a big thank you, (oh my god, what’s he going to say?), to Ajay and his family for all their hard work over the weeks…”

Ajay??  Who the f…?

“…And it is with the greatest honour that I declare the Greendale Station, open!”

Yes, Tiddles had decided that with a mic in his hand he would deliver a soliloquy from Postman Pat and would’ve carried on to Thunderbirds if we had let him.

Welcome to the wonderful world of autistic behaviour…

Somebody pointed out to me the other day that in a way, I’m almost grieving for the boy that I’ve lost.  Although Tiddles is here and I’ll never leave him, I always feel that maybe in another universe there is the little boy that was here, and might’ve grown up ‘normal’.  Who knows?  I love Tiddles, unconditionally and forever more and I would never swap him for anything, because for better or for worse, he is my Tiddles and fate/karma/destiny has decided that I am the one to protect him.  I may not be able to save money or goals, or even my soul, but I can save him. 

And it is a grieving process that I will continue to relive over and again.  I grieved when his diagnosis was delivered because he was no longer a baby, he was now a special needs baby and everything that we hoped for him was gone.

I grieved when he was diagnosed with epilepsy, as everything changed again and he was now going to be on medication and I wondered how much more of this could one boy deal with.

And I’m grieving now, as he is no longer a boy but a young adult, with spots and hair growing everywhere and a voice that is breaking.  My beautiful little boy in the physical sense is gone and now I have a beautiful big teenager, but who will always be my little boy…

And yes, I do have tears in my eyes as I write that…

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4 Comments
  1. lin permalink

    Hi Lin
    I see that your heart is as big and generous as ever.
    love as ever Lin from Harlowx

  2. I remember feeling exactly the same when my autistic son became a teen… And yes, I too have tears in my eyes as I read this.

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