‘You make disability look expensive’ – Alex Perry

It takes no effort Alex, because disability IS expensive.  Just like when you put the word ‘ wedding’ in front of something, the price sky rockets.  It’s the same with disability.  One AFO boot costs $1,000.00 (and that’s just for one leg); various therapy up to $200 per session; communication devices – from $500.00 to $5,000.00; special needs prams $700; wheelchairs – $1,000’s – the list is long and endless and the price is high.  As funds run low, and various schemes run out, as our kids get older, the disability doesn’t go away, neither does the price tag.

Over time, we have come to realise what is truly beneficial to Mikey in comparison to what we can do without.   Sometimes it’s about trying different things but it’s also about pushing back for your own sanity. Trying to do everything at once, doesn’t work.  You either burn out running around to each therapy appointment (as I found out!), your child gets burned out with too much overload (yes, often!) or the car burns out and you are then hit with a big mechanical bill (yep, check that too!)

There are a few things that we do for ‘free’ on any given week – no particular order, no particular day, we now try to limit the official therapy sessions for 3 times a month – alternating weeks, with horse riding being the weekly constant.  That checks off physio – especially core-strength which helps with Mikey’s ability to understand and learn, Occupational Therapy – using his hemiside to hold the reins – and communication.

Here are a few things I’ve done this year, following on from the past 3 years of trying to do it all and feeling the pressure to do it all.  I’ve kicked the ‘mother guilt’ to the curb and that helps too!

  • THE PARK – yes, you are sure to come home with a bruise and probably a lost shoe – but you can confidently check off – phsyio and OT all in one hit – plus sensory and communication – Bam, done!   If you chase bush turkeys around as well in the park, give yourself an extra coffee treat once you get home!  Efficiency at it’s best.
  • CLOUD DOUGH / KINETIC SAND – you can make your own using flour and oil (2 parts oil to 8 parts flour, add food dye to the mix too if you’re game) – the family pet can safely eat it without needing an expensive operation thereafter as well, which is always a money saver.

With the NDIS coming in, there is a lot of positive and negative comments buzzing around but with change, always follows with the ebs and flows.  Just as Mikey grows and his needs change, we too will adapt.  It’s a constant process to just let go at times and let him lead the way, but just like with any child, I feel with our situation with Mikey, it’s the same for him too.  He is showing us daily that we need to have faith he will reach his own milestones in his own time, and that’s perfectly fine.  We need to stop the comparisons and listening to the white noise that has become a sort of ‘competition’ between our children.  You know what I’m talking about 😉

In conclusion to this post, if you can get to the park and totally rock your outfit – like we did today – check the leopard print look Mikey and I ‘accidentally’ coordinated –  if you happen to bump into Alex Perry he will sure to be uber-impressed 🙂

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