Did she just say that? 


Recently at a course I attended about autism a conversation came to light about if you had the chance to take autism away from your child would you do it?

Everyone has their own spin on this and in my experience it is rare that you will hear someone say yes of course I would whether that is really how they feel or its fear of judgement and negativity I don’t know. Obviously some children’s behaviours are very different to the next, they are unique.   I’ve hear an awful lot “I wouldn’t change them for the world!”  “He/she is unique they wouldn’t be the same without autism”

So as we talked and it came to my turn I said yes (sharp intake of breath) I would do anything for Reilly not to be non verbal autistic. Shock horror gasp.

Why would you want to change him!!

Well this is something I’ve thought long and hard about in those hours between worrying about is he going to be happy to go to school tomorrow and what will happen to him if I died tomorrow extreme shift in thinking to some, nightly occurrence for me.

The first thing I need to make clear is that my love for Reilly is infinitive, never question that. I get excited at the thought of a night away with girls then feel like someone is standing on my heart when we are apart.  He is a brilliant little man, he would also be the same brilliant little man minus autism – free of all the sometimes debilitating extras that go hand in hand with it & he’d probably, almost definitely be more chilled out.  To see his struggles breaks my heart.  For example Thing 2 coughed yesterday, a tiny little cough which was barely audible.  Reilly appeared at the conservatory door like a vigilante finding his pray! He attacked thing 2 pulling his hair and hitting him in the face, he ran into the kitchen and pulled my dishes off the drainer smashing the cups and proceeded to try and stand on the pieces he then ran upstairs and screamed for 50 minutes.  Would I change this behaviour damn right I would. This happens everyday by the way, he has certain noises which triggers huge emotional reactions. Possibly misophonia but that’s never been diagnosed.

Would I change that he sometimes sleeps for 3 hours? Do I really need to go there? No brainer.

Would I change the fact that he is and may well be for the rest of his days cursed with social anxiety? Yup I would.

Would I change the fact that he can’t talk when I know he has so much to say.  That I may never talk about his favourite film, why he’s obsessed with water, what he thinks of Things 1 & 2 or even why he hates coughing?  Another yes, in a heartbeat.

Would I change that I’ve never heard the word Mam, you know it!

Would I change that he only eats beige food? Of course I would.

Would I change that his brother hates being at home because of meltdowns. Yes for sure.

Would I change that he has no fear, that when he runs he doesn’t stop regardless of anything around him.  Yes I’m terrified. There are so many examples of things that make me fearful for Reillys future I could write 100 pages.

I am blessed with an amazing little man, but he is certainly a little man with a big struggle and I would do anything to change that, nobody wants their child to struggle and it’s OK to admit that autism is damn hard to deal with.  More about me than Reilly you might say – well that’s ok too and if it makes me selfish to want a calmer, easier life for my family then I’m guilty as charged.

2 Comments

  1. Exactly right. Why wouldn’t we want the best possible life for our children. I would change Paddy without hesitation.
    And I’d love nothing more that to not worry about who’s going to take care of him when I’m gone.

    Liked by 1 person

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