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 8^th of the 8^th 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.

THANK YOU.

**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.

Help!

I don't write much anymore.  I rarely post on this blog and what the future holds for it I don't know.

I lost my writing itch some time last year when I lost my self.

I had a breakdown.  My life exploded, my heart shattered and I've been clawing my way back very slowly one tiny broken hearted piece at a time putting one foot in front of the other as it's all I've been able to manage.  I stopped writing and I also stopped speaking out.  I declined public speaking engagements and turned down media invitations to speak out about autism, carers and what the issues so desperately in need of overhaul are in these areas.   I've watched with interest the recent media interest in autism and have actively avoided making myself available to participate in any of it and have shied away from suggestions I should get back out there and speak out to raise awareness again.

I've been busy taking care of me.  I haven't had the inclination to be a voice for autism or carers for so long and my inclination to help others was crushed last year along with my heart so bitterness has crept in and now I'm just trying to stay afloat in a sea of self doubt and autism battle scars.  I am full of doubt about what the hell I can do to make a difference anyway and why the hell I'd bother when all the talking, speaking and fighting yielded me a life that now resembles a train wreck.

I made time just now though and finally got to sit down for the full 18 minute ACA (Channel 9's A Current Affair) tip of the iceberg forum on Autism just now and watched online  (http://aca.ninemsn.com.au/video.aspx).  Within 30 seconds I started bawling my eyes out and not because my children are severely affected, not because their future is bleak because of missing out on therapies and not because I relate to the exhausting 24 hour grind of stimming, non verbal frustration based meltdowns and being injured every time I attempt to hug them.  Quite the opposite.  How blessed our family is that we DID get access to life changing early intervention after stamping my foot, screaming at medical professionals to LISTEN and pushing the buttons of every professional in an educational setting we've been involved in (which has NOT won me friends but I frankly don't give a crap as I need my boys to get EVERYTHING EVERY child should be entitled to in this "lucky" country so making more friends is the last thing on my one track mind when fighting every step of the way for THEM).

Nope, I don't have to endure the emotional agony of being pushed away because they are so sensory defensive that a hug is painful for  them.  I can thank the hundreds of hours and thousands and thousands of dollars (some because of funding and some from our own very empty pocket) we sunk into sensory integration therapy from world leaders in the field for the regular hugs I receive.

I don't have the unimaginable heartache of never hearing my babies tell me they love me or even the frustration of not understanding a request for a drink or toilet break because my boys are verbally capable of telling me what they need thanks to the hours of speech therapy and O.T. which is also because of early intervention funding and the sacrifice of accepting early on we would never own a home and instead spend what we had aside for the Aussie dream on therapy.  I gave up the idea of going back to work and have done Autism full time 4.5 years now to give our boys the access to dreams of their own one day to the detriment of everything else in my life.  I lost several friends for varying reasons (none of which I dwell on as I have no time and really never will so have accepted that Autism ain't for wimps and those who managed to stick it out are the keepers anyway).

I've pissed off supportive family members regularly because I had/have no time for anything else.  Nothing else.  I don't remember birthdays, I rarely call, I have no idea what's going on in anyone's lives except my boys.  I forgot I had a husband who I pretty much ignored, resented and then lost.

I lost my husband who eventually got fed up with being ignored and resented and when you ignore someone long enough they will gravitate toward someone else who doesn't ignore or resent them.  I've never said that one out loud online before.  Never confirmed what many suspected.  If you suspected that misery loves company, then yep, misery found some equally miserable company and I lost him to her.  Absolutely devastating.

She's out of the picture now. I guess it was just another "fight" I fought and won if winning is even possible in the war of broken spirits and shattered hearts.  I slayed the dragon of pathetic misery taking what was not hers to take and I fought for my husband to come back to me.... A fighter.  He is back but life is fundamentally changed. I'm fundamentally changed. I'll never be the same.  This means my boys lives are fundamentally changed.  That makes me angry, sad and a little defeated.  I've won so many battles for these babies and there is no doubt that they are leaps and bounds ahead because of it.  What was the cost?  There is carnage.  So much carnage.  Life is forever different now.  A new fight ensues now.  The fight I fight with myself and my conscience.  Should I regret the actions I took in my battles because of the casualties like friends and my marriage or celebrate the wins with gusto and accept all's fair in love and war?

Should I fight my own misery now?  The misery of heartbreak and betrayal is deep.  So very very deep.  I've needed to call in reinforcements for this fight.  Counseling.  Counseling to help communicate with my husband and rediscover our broken battle scarred relationship.  Even the language of counseling can be likened to battle terms too.  Apparently I attack.  I attack autism.  I attack obstacles and I fight.  I say I ignored my husband but through counseling it's becoming evident that I've become so familiar and accustomed to attack mode that I seem like I'm on the attack all of the time.  I guess it's hard to live with communication that feels like it's an attack on your abilities and commitment all of the time.

No wonder misery entered.  Misery only loves miserable company for so long it seems though, particularly when that miserable company acts as a mirror.  Looking into a mirror and only seeing selfish weakness when a life in autism requires the polar opposite being selfless strength NOT selfish weakness, well it acts as a wake up call to the weak to appreciate just why being ignored and feeling like that isolation was an attack on your partner's commitment is almost necessary to just "suck up" during a time when a mother's babies need her to be ruthless, friendless if necessary, lonely if required, invincible in every situation requiring the fortitude to FIGHT for her children and single minded enough to beat a path of fairness for a better future.

I wonder if access to counseling from day one of diagnosis would have helped?  I wonder if his misery might not have gotten to the point of seeking out equally miserable company.  You have to wonder if the divorce rate in this world of autism could be helped somehow with better support for parents who become soldiers.  It's so hard to remember which side you are even fighting for after a while.  It all just becomes part of the war.  One day merges into the next one with battle after battle.  When you are losing parts of yourself along the way and there are few people willing to join your army it's almost inevitable that those you thought were on your side defect, go AWOL or just surrender in their own fight to stay alive or feel alive outside of autism.

So now I'm fighting the battle of myself.  The battle of marriage and the battle of forgiveness.  I know there will be so much more fighting to do.  I need my husband and I to be a united front and I'm trying to muck in and get to the next battle together amidst the bombs of life with autism dropping around me.

So when I watched ACA and saw the families describing their lives, saw the kids who did not get early intervention, heard the parents describing the strain on a marriage and the urgent need for reform in the areas of funding in all of it's edited glory I cried.  I just cried.  What hope is there when the minister for disability can't even show up for the forum and instead sends a tokenistic and unbelievably condescending video message waxing lyrical about "understanding" our families?  Stop talking and join the battle.  Take up the fight for fair education opportunities for our kids.  Take up the fight for fairer funding for essential therapies for our kids and take up the fight to support our kid's carers to better be able to stay in the fight TOGETHER.  We need respite.  We need help.  We need awareness and we need it now.  None of us have another 4 years in us and those who have been in the war for 10, 15, 20, 40 years don't have another day in them.

I cried because my boys got the funding and we used the funding.  They are now high functioning and doing well.  Now what?

What happens now?

It came at the cost of my health (mental and physical), my marriage, my career, my financial future, my dreams, myself.

I have post traumatic stress disorder from the battle.

I said "we" need help and I meant the autism community as a whole.  "I" am part of that community and "I" need help.  Stop talking.  Help already.

Every single child in this country deserves the best.  Including those with autism.  Including mine.

Tell the politicians.  Don't accept that in this country children are going without essential therapies and families are falling apart in a hopeless fight.  It's not good enough.  I'll start speaking out again but I need help.

April is Autism Awareness Month.  Start helping, start speaking out and start helping.

Minister Jenny Macklin.  Are you listening?  Are YOU helping?

I am on my knees.