Nicky’s Story

Nicky, my gorgeous first born son (out of two), had quite the traumatic birth.  The story is long and scary, but his entry into this world was a miracle.  After sharing the pregnancy from hell, where my body literally fell apart, and a traumatic birth, it seemed like Nicky and I had a bond that would last the ages.

Nicky and I in recovery

He was such a cute little boy.  With an awesome smile that would light up a room, and a cheeky personality, he had everyone wrapped around his finger from the start.  He did really well at daycare and had quite the normal life until he was in Kindy.  Then we started to realise that things weren’t quite “right”.

Nicky Grass 1 Small

Nicky had always been quirky.  However when he was four, we realised that this quirkiness actually had a name – Autism (Aspergers).  It took well over a year for a diagnosis because no one picked up on the fact that my little man had a gift too – he was gifted.  Particularly in maths, which he loves!!!

Wedding - Nicky

A couple of years later, the answers to the mystery of Nicky’s aches and pains and hypermobility came to us as well – the boys and I all had Ehlers Danlos Syndrome…

There is more medical history in Nicky’s file, however I don’t like to put everything about my boys on the internet.


Nicky has had a hard time all round really.  He really suffered when we moved the second time (he was a baby when we moved the first time).  Some parents talk of their child changing one day (usually when they are trying to blame vaccinations).  Nicky seemed to do the same, but it was the move back to our home town that did it.  Before, he had friends at daycare, and for a long time after the move, he just couldn’t seem to make any at all.  He has had trouble ever since then too.  He has always had sensory issues, however these became magnified.  He has had to leave mainstream school twice to be homeschooled (and is currently homeschooled).  Etc etc.  Nevertheless, he soldiers on, always putting one foot in front of the other.  He never gives up.  He is full of empathy, always taking care of me in any way he knows how (real or imagined lol).  He is always asking questions, and working things out.  He speaks of issues way ahead of his years, and demands grown up answers!  Quite the complication when he hears about sex at seven years of age!!!  He loves to laugh, although this too can pain him to the point of tears (too much emotion can be painful for people on the spectrum).  He takes his big brother role seriously, often to the point that we need to remind him that Quinn already has parents.  And he wouldn’t hurt a fly, not even if the fly hurt him first.

2013 - Nicky - Caloundra 2

I love him to the moon and back and I wish I could do so much more for him!

My wish list for Nicky:

See his psychologist on a regular basis – private reasons.  Better shoes – he has orthotics.  Regular indoor climbing – need support worker.  Regular trips out to park and beach – need support worker.  Educational and productivity programs for his computer.  More life experiences – our family is often stuck at home now due to my disability.

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Pissed off since 1995. Mad as a hatter since way before that.

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