Friday, March 23, 2012

Baby Steps and Speaking Out

So to follow on from my last post I tentatively stepped back into the public speaking arena today on behalf of one of my very favourite organisations, Carers Australia, who are the recipients of the Pollie Pedal fundraising event.  Carers Australia and Carers NSW invited me to tell my story at the launch of Pollie Pedal which took place at major sponsor, AMGEN's premises with special guests, Ara Creswell - Carers Australia CEO, Elena Katrakis - Carers NSW CEO and John Alexander MP.

I was speaking about caring and the impact on one's life becoming a full time carer has.  I'm sure AMGEN and Carers Australia won't mind that I've shared my debut speaking gig post life overhaul malaise here with YOU.

Read on and enjoy:

Good afternoon everyone, my name is Chantelle and thank you to AMGEN for having me and asking me to tell my story today.

I will just start by saying that I’m not a professional or particularly talented public speaker.  I’m just a mum who happens to be walking a different path than many of my peers as when I became a mum I also became what we now know is termed “a carer” as well….   And like many mums with small children I get pretty excited when an opportunity presents itself to mix with real life adults.  Also just like other mums I don’t get a lot of sleep…..

Soooooo that combination CAN be a little dangerous out in public. 

I’ve been up since about 4 am so if I don’t nod off mid-sentence then we’ll deem this a success ok?  Deal?

So to tell you my “warts and all” carer story in 5-7 minutes I really need to leave out quite a lot of the ALL and several WARTS too.  If you have any specific questions about anything I mention, please don’t hesitate to ask me later.  I LOVE TO CHAT.  So…….

Most people have significant events or dates in their life that changed it.  The day you graduated university perhaps, the day you got married for instance or the day you gave birth to your first child.

I can relate to the day I got married and the birthdates of both of my beautiful bouncing baby boys (who could forget birthing all 10 pound 4 and 10 pound 9 of them…. really)?  Yes you heard right.  10 pound 4 and 10 pound 9.  Oh and my second child, without pain relief and in the record time of 55 minutes.  You may give me a round of applause for that if NOTHING else today if you wish but I digress as that doesn’t really make me a better carer it just makes me AWESOME.

Ok Ice firmly broken……  Let’s get on with it.

Another date I’ll never forget and when my life changed forever is the 8th of the 8th 08 (080808) when my gloriously handsome clever and quirky firstborn baby, Jackson, at 2 years and 10 months old was diagnosed with Autism.  We’d known things were not quite the same as the other kids in Mums group for a while and my inkling that Jackson was developing differently turned out to be spot on when after a very harrowing and complicated diagnostic process Autism was confirmed. 

My second son Hunter was only 20 weeks old when Jackson’s diagnosis came through so a new baby, a toddler with Autism and a landlord announcing we had to move in unrelated but badly timed circumstances was a pretty chaotic and confusing time. 

Did I mention that during all of this my husband was struck down with Viral Meningitis from which he still suffers memory issues among other side effects?  Well yes…  Add in THAT and you’ll see that caring landed in my life with all the subtlety of a sledgehammer.  Not one to do things by halves around a year later give or take a few months (dates had become a little blurry by then) my second delightful, gorgeous and amazingly fabulous son was also diagnosed with an autism spectrum disorder. 

It was quickly evident that my previous life plans of returning to work at some stage for financial security were now very much secondary to a life of early intervention, never ending appointments, advocating for my children’s basic rights and sometimes working with but most times fighting with “systems” doctors, therapists, schools, policies and much more and this new life was now my “normal.” 

Dreams of a nice house and a picket fence were replaced by dreams of my children having not special opportunities but at least equal ones to other children without a disability.

It was like a bomb or several consecutive bombs had exploded in the middle of my life and I became a lone (and very lonely) soldier fighting a war I never asked to be in.

That’s the thing about caring though.  Nobody asks to become a carer.  Caring does not discriminate. 

People discriminate but caring does not.  You can become a carer anywhere at any time and chances are you will not be prepared.  Few are.

I can only speak for myself but I’m pretty sure not many of us meticulously and responsibly plan for the event that our children are either born with or acquire through accident or injury, a disability of any kind. 

I’m not sure I gave it much thought as after all this is the lucky country and like most couples planning a baby we thought we are young and free just like the song goes.  She’ll be right mate?  Well maybe not that cavalier BUT disability definitely didn’t factor into our plans for a family and the financial and emotional strain on a marriage that caring brings is nothing short of EPIC.  Trust me.

Few of us would be planning babies and say, “hang on a minute babe, are you sure we’ve set enough money and emotional fortitude aside for predominantly unfunded lifelong therapies for the child we are planning in the case of them having autism?”
Any caring situation can happen at any time as I said.  Mental  illness, disability through injury, chronic illness and any other circumstance where you are required to become a loved one’s full time and unpaid carer can come out of the blue when you least expect it.  Although I would ask you all to consider that most of us have parents.  So whilst caring seems to be an issue that OTHERS deal with at some stage caring is VERY likely to touch your life via caring or at least making plans for elderly parents as they age.  Caring is in fact NOT something that just happens to others.  It is an issue for us all when you consider this.

If or when “caring” happens it’s overwhelming, confusing and above all EXHAUSTING.  Where do I go for help, what funding if any can I access, what is this elusive thing called respite other carers speak of?  Who do I talk to when I’m having a day where winning just the battle at hand seems impossible let alone the war at large?  How do I find support and some guidance?

Enter Carers Australia.  Finding a first port of call in a sea of complete and utter confusion and sudden isolation can be the difference between sinking or swimming for carers.

Carers need a glimpse of land when on stormy seas, including information, opportunities to connect and practical help.  A reference point to turn to and help direct us to appropriate services and support in this new world and most of all we need a voice on the days when our own is just too defeated and too tired to shout.

So thank you AMGEN and Pollie Pedal for supporting Carers Australia as YOUR support helps them care for those of us caring for the one or ones we love.

Although being the mother and carer of two children with autism is without question the most difficult challenge I’ve ever faced it is also the most rewarding experience I’ve had too.  Even on the bad days I wouldn’t change my children BUT as hokey as it sounds I’d like to change the world they are growing up in and YOU are helping me do that.  By caring for me, the carer, you are helping me care for my boys and they are the loves of my life.


**Cue applause and lunch with the lovely people of AMGEN and Bennelong Member of Parliament (and tennis legend) John Alexander MP, Ara Creswell, and Elena Kratakis.

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