When we were new to Autism, it was all very strange and frightening. What was going to happen now? Was my child going to have a ‘life’ worth living? Would he ever have friends? When would the meltdowns ever end? What IS a ‘meltdown’? Could the ever live an ‘independent’ life?…….
The questions were endless! But so was my grief and sorrow! Grief for the child I had ‘lost’, sorrow for the life they would never get to live! Ohhhh – and what the hell IS Autism anyway? Can they grow out of it? Will it go away? On and on the questions went! And, for every answer I found, a dozen new questions popped up!
Then, at some point, I had a moment of clarity!
I was thinking about Autism from MY point of view – NOT that of my child! I was worrying about the aspirations I had for my child, not how they felt or what THEY wanted! It was MY grief that I was struggling with – my child had nothing to grieve about!
In their own way, in their own world, they were usually happy! Sure, their frustrations often spilled out as anger and meltdowns and it was heart-breaking for everyone – but it was often soon forgotten and the trains all got lined up again or the same old TV show blared out (how MANY times have I got to see that show?!), or whatever today’s particular fixation was!
Don’t get me wrong – life is far from easy now, but it isn’t bad – it’s just different! Different from all I had planned, different from that of all of my friends, different from anything I EVER imagined…….
But my heart TOTALLY belongs to this little bundle of (sometimes) confused energy! This child who sees what many others don’t and (if I’m lucky) will share those moments with me! I don’t get many loves and only the occasional kiss, but when they DO happen – they make my brain explode with happiness! (I DO wish they would let me sleep occasionally though!)
Different ISN’T wrong! Different ISN’T bad! It doesn’t HAVE to be sad! It’s just DIFFERENT – nothing more, nothing less! And a child with Autism still has a FULL life to live, adventures to be had, discoveries to be made…..
I can never forget that my child has Autism (believe me – I DO try!), but then I remember that they are exactly the SAME child I always knew! The diagnosis didn’t change that in any way! And I love them just as much now as I did then (maybe even more?)!
If you are a parent new to Autism, I hope this can help you to see that your world didn’t just turn black – just a different shade of EVERY colour under the rainbow!!!!
One last thought. At diagnosis, I felt very alone – like mine was the ONLY world that Autism had ‘touched’! As I now know is often the case, I received my child’s diagnosis, then was pretty much left to my own devices! I did some research on-line (some of which gave me nightmares and is NOTHING like how my child turned out!) and I asked a few ‘specialists’ (who seemed to know little more than me, and often had very much outdated thoughts and ideas!)
It turns out there is PLENTY of help out there – in the form of other parents and ‘carers,’ all going through (or been through!) the same as me!
PLEASE – if you only do one thing – reach out; find the help that is waiting to hear from you! Join local groups (most areas will have one, although they can be a bit of a challenge to find!) and join a good, trustworthy group in the Social Media – Facebook being a good start!
Thank you for sharing your perspective Ian! The journey is indeed, rich! 🙂
© Ian Hughes. 2014
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