Downsideup

I’ve got a stack of reports I’ve collected over the almost 6 years I’ve been caring for my oldest boy. There’s letters confirming this diagnosis or that. There’s entry and exit reports, speech, OT & physio reports, school reports, IEP’s, EAP’s, progress reports – you name it, someone wrote a report about it.

a child with a disability needs a lot of paper!

 

Last week I received a copy of some recent reports from the education department who go through a process called ‘verification’ to confirm that your child has a disability and that they are attending the appropriate educational facility. My little guy has been verified in three different areas – his autism, his visual impairment and his intellectual impairment.

Now you don’t get to this point without knowing that he (and I!) have some pretty big challenges ahead. But seeing their assessment of his intellectual impairment was one of ‘those’ moments. Sobering. It had never been officially confirmed before now, it’s so hard to really know or to accurately assess when their communication is so limited. So seeing it in black and white, in no uncertain terms – felt like a blow.

Autism is so unique and variable. I have met and read about and marvelled at some of the most wonderful people who have autism. I know that for some – there is a key that can connect our worlds. It may be an ipad or music or painting or maths or cars or even medication. You may find that key when they are young or later in life when they blow your mind by communicating and connecting in a way you never thought they would or could.

Finding that key is a parent’s life mission. But it can be a shapeshifting, mysterious, enigma wrapped in a riddle kind of key. You have to keep believing that it exists, despite the reports. That’s what will keep you getting up in the morning and starting the day with a hopeful, optimistic view of the world while also enjoying the beautiful child – in all their challenging glory – that you have in front of you day to day.

So, I’m processing all this and thinking about what it all means. I’ve been mulling it over for a week now and the thing I keep coming back to is this – reports, assessments and diagnoses are not true representations of the whole person. They are only looking at a snapshot in time or a point on a bell curve or a tick in a box. My little boy is so much more than that. His life is far more meaningful than that. And most importantly, his potential is unknown and this cannot be reported on or assessed.

There are so many amazing examples of people who have been ‘written off’ by the professionals, but who with perseverance (something autistics specialise in!!!) and loving support amaze and inspire us with their contributions to the world, their strength of character and their willingness to beat the odds.

I was looking for some examples of this today when I remembered a truly remarkable young Australian man – Luke Vujicic. If anyone can make you believe that we all have a place in the world, that we all have unknown potential and that as a parent it’s my job to help all my kids to explore that, to pursue it, hunt it down and wrestle it to the ground and enjoy the process – then Luke can. Watch this! (sorry about the advert that kicks it off).

Luke Vujicic

 

 

 

Advertisements

2 thoughts on “Downsideup

  1. Yes Rose, seeing the clinical black and white description of your child’s differences is a killer—and it takes miles of a parent’s life each time they see it . . . over and over again.

    I marvel at your ability to not only parent, but to articulate the past, present, and future possibilities for these kids so well! For many of us the day consumes our energy and all we can do is to babble at the end. Your writing ability takes a back seat to no one and I’m proud to know you!!!

    Loved the video—so inspiring!

    • Well George, you are one of those who have gone before. Cutting your way through the red tape bureaucracy jungle, the therapy maze, the educational mystery train and the pharmaceutical lucky dip. It’s exhausting just thinking about it let alone living it day in day out. So I’m following your lead!
      Thank you so much for reading and commenting George.

Your thoughts?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s