Being the “I” in Identity

Greetings from Co. Monaghan…no, Lisa hasn’t decamped to Ulster to satisfy her lust for drumlins and soda farls.  This is Jean dropping in to say “hello” and to invite you for a little meander down the path with me.  Wear your best shoes.

I’m not quite at the veteran stage of my amble along the autistic yellow brick road, but I am far enough along it to have to squint and peer into the distance to see where I started my journey.

I wonder sometimes what do I expect when I reach Oz, and why I am trying so damn hard to get there?

Sometimes I dreamily imagine that one day I will pass through the gates, all will become clear and that my deficits in knowledge, courage and strength will be resolved.  I will be able to hang up my ruby slippers, put my feet up and relax soundly in the relief of having arrived.

But of course, a pleasant daydream is all it is.

My stroll along the yellow brick road will never end, and Oz will always be a hazy mirage in the distance.
And that’s OK, because now that my high heels have got accustomed to the cobble stones, I realise that the view is nice, the air is clear and that I have some pretty cool company along the way.

But while we are making this unexpected (but endlessly fascinating) journey, it is vital not to cast off pieces of ourselves as we struggle to carry and absorb the mountainous skills, experience and knowledge we need to help our autistic children become all that they are capable of becoming.

It’s a testing balancing act to be an Autie Parent who also reads Roddy Doyle novels and would one day like to learn to play the fiddle.  It is very easy to spend your precious few spare euros on theraputty for your child, instead of moisturiser for yourself.  It is frighteningly simple to cancel coffee with your friends because you have to go to Speech Therapy/ school meeting/ Occupational Therapy, or the 1001 other appointments that crowd our diaries.


Who we are can, with horrible ease, become a whisper of a memory while we’re looking the other way.

I recently wrote a blog about maintaining a sense of self (which you are welcome to read here, if there is nothing on the TV) , as it is so disarmingly easy to become swamped by All Things Autism, and to forget that you have your own beating heart and own ambitions and dreams.

Not for your autistic child, but for yourself.

A few months ago I was rattled when I asked myself  “if my son suddenly became neuro-typical, who would I be?” 

The deafening silence which answered me shook me to the core.  I felt like I had consumed autism to the point that it began to consume me and I made a conscious decision to Go Forth And Get A Life.
Of course autism has become an integral part of my life, just as it should….but the significant word in that sentence is part.

This Life Getting quest I’ve embarked on is not easy, and sometimes I feel I’ll have to get my name tattooed on the back of my hand in case I forget that it is something other than “mammy”.  Unless I pay attention I inevitably return to my default position of parent/ caregiver/teacher.

But I am slowly re-learning what makes me tick

I changed hairdressers and am having fun agonizing over highlights vs. lowlights.
I visit bookshops and studiously ignore the medical section.
I am listening to music that doesn’t end in “pop goes the weasel”.

In my wilder moments I’m even threatening to join a gym…somebody stop me before I lose the run of myself!!!

When the starting pistol was shot at the onset of the yellow brick road, I was wearing lead-filled wellies and was weighed down by a head full of  dark thoughts.

Now I wear better shoes (ruby, of course) and I’m working on achieving a passable balance while sporting these wonderfully exciting heels.

Clichés are repeated so often because they have a grain of truth in them  (brace yourselves, there’s a biggie coming atcha)….  It is not the destination, but the journey, where all our questions are answered and where we can, if we allow it, blossom in the way we  so ardently hope that our children will.

Phew!
OK, it’s safe to resume reading now… the scary clichés have gone away.

Before I sprout a small beard and start stroking it while randomly inflicting pearls of wisdom on the Unsuspecting Reader, I will potter off to read another chapter of my book which (shock! horror!) doesn’t mention the word “autism” once!

I may even go mad and have a cup of tea.

It’s a small step in my ruby slippers towards remembering who I am.

I’d like to thank Lisa for the opportunity to guest blog here.

Irish Autism Action

Irish Autism Action is an umbrella organisation with 33 member groups and 3,500 individual members. Our members range from the 13 Special Schools for Children with Autism to local support groups and are located in practically every county in Ireland.