Hi everyone, I'm sure we've all received this one...
Dear A4 member,
We have been contacted (indirectly) by Jane Worthington from the Woman's Day magazine about doing a 4 page spread on the lack of options for families with a child with a disability.
All she wants is a paragraph about your situation and a photo of you and the child you care for. She asks that you include your child’s age, details of condition and your “beef”, email and other contact details.
Send to Jane at JWorthington@acpmagazines.com.au by April 4.
She needs people from across Australia so please send this through your networks.
EAGER TO ASSIST, this was my email to Jane Worthington:
Hi Ms Jane Worthington
I was pleased to discover that Woman’s Day is doing a feature on children with a disability in the magazine. I would love to provide input, but I have been informed that you are inundated already. Please let me know if you are interested in the amazing attached story I wrote about Leanne Count before she passed away nearly two years ago. Leanne was the founder and chairperson of Autism Solutions Incorporated www.autismsolutionsinc.org.au
We are a not for profit organisation run primarily by parents with children on the autism spectrum and we are trying to raise awareness in the greater community. I am a board member and a mother to 6 children, the third one Sian was diagnosed with autism at age 2 years and seven months. Bronte (Leanne’s daughter) and Sian have been best friends ever since Leanne and I met 7 years ago.
May is Autism Awareness month nationally and it would be fantastic if you wrote a story on ASD. It astounds me how few people know when Autism Awareness month is in Australia…would be great to share this wonderful news with everyone.
I praise and applaud you for writing the article and I look forward to buying a copy when its out on the stands.
This was Jane worthington's reply:
From: Worthington, Jane [mailto:JWorthington@acpmagazines.com.au]
Sent: Tuesday, 30 March 2010 10:29 AM
Subject: RE: Autism
HI Matt, sorry but we have been flooded. I cannot run all the stories we have already…but will do my best to fight for you cause generally. Regards, Jane
Health Editor, Woman's Day Magazine
54 Park St Sydney, 2000
PH 02 9282 8498
0403 824 833
Bob Buckley has kindly offered this response to my dilemma:
From: Bob Buckley (A4 Convenor) [mailto:firstname.lastname@example.org]
Sent: Wednesday, 31 March 2010 5:35 PM
Subject: Re: FW: Autism
Thank you for the information. I wonder how many people got this type of response?
I am happy to publish your story and any other in the A4 Updates if they are not published in Woman's Day. And I will give your story to the Government if you would like me to ... I will hand deliver it to Bill Shorten and I will try for Jenny Macklin and Kevin Rudd (and Tony Abbot and Bob Brown). Is that what you would like to see happen? Is that what others want, too? Hopefully this will mean your efforts writing your stories are not wasted.
Tonight I am in the process of sending this letter to Bob Buckley:
Al members, please feel free to comment and/or post your own personal stories...
Dear Bob Buckley
I’ve admired your dedication to our cause for a long time. Thank you. Thank you so very much for all your efforts over the years. I don’t know if you hear it often or even at all, but thank you so much for giving us a voice, especially in the political arena where I dare not tread. I’ve observed politicians over the years and the games they play. They are passive aggressive participants in a constant plethora of lexical theatre sports in full form with parliament as the backdrop, (pure entertainment, interjected with childish rants and unacceptable behaviour not fit for local school classrooms) with a short term view to win popularity votes. The ultimate prize winners who stay the course are rewarded with the advancements of their own careers, enlarged egos and of course along with media attention comes celebrity status. Most do not walk amongst us in the real world...I can only imagine where ASD sits on their agenda..if it's even there at all.
While politicians continue doing what they do best, parents and carers everywhere are barely coping, exhausted from caring for their loved ones 24/7. There just doesn’t seem to be enough hours in the day to cope with the demands of our daily lives AND put the extra energy needed into getting the message out there and then when we spare a moment to try...who listens? I laughed when I got the reply from Ms Worthington (by the way, she is the only person from the media who has even bothered to reply so I am truly grateful). She didn’t even read my letter...I signed off as Stephanie but she called me Matt...I thought to myself “When will the blind see?”
Today, my friend pointed out to me that if there’s such a HUGE response to Ms Worthington's request, then there must be many and varied passionate issues that need to be raised and made public and not flippantly dismissed. Which leads me to ask too, what will happen to those unpublished stories? Who will hear their plea? I'm just one person and I've got a book full, not just a paragraph. And I know I'm not alone.
I’m trying not to get frustrated but all my efforts to date have fallen on deaf ears. The "media" are the perfect example of ignorance. I have some amazing stories to share. Ones that would make you laugh, make you cry but most importantly that share the life experiences of a growing number of Australian families because ASD will simply not go away. Those who continue to “hide their head in the sand, like an ostrich” are said to be foolishly ignoring the problem, while hoping it will magically vanish. But the simple fact remains, there are families living in our communities who are struggling right now. They are vulnerable, hanging on by a thread and desperately need to be heard.
There is no one size fits all with ASD or any other "disability" as Ms Worthington put it (I dislike this word immensely). Just as I dislike it when I hear someone say autistic child...I wish they could see the child FIRST not just the so called "disability" ie, why not say a child WITH autism. Everyone with a "disability" has a gift to share with the world and each of them gives us the opportunity to show ourselves for who we really are. But the fact is, there is no ‘right’ or ‘wrong’, no ‘should’ or ‘shouldn’t’ but in each instance, common sense should prevail. Changes must be made right now, so those who are yet begin their journey down the same road we have already travelled, will not have to endure the same struggles.
My own wish for families is that they not suffer the grief and hopelessness I endured. My daughter Sian and I are victims of "the system." After seeing the health nurse for her 18 month check up (it was blatantly obvious even then that she had autism) who assured me that my daughter was developing "normally" (that's an incredible story in itself), there was the soul destroying conversation I had with a woman who answered the telephone when I called the Autism Association WA. I explained my situation and told her that I suspected that Sian had Autism. I asked for advice and whether the Autism Association could help us. Then came the dreaded reply "You have to get a diagnosis first!" A diagnosis? I thought, what does she mean? When I asked her what would happen after she was "diagnosed", the woman replied, "Therapy is offered for two hour sessions, twice a week". Therapy I thought, what does she mean? But before I had the opportunity to ask, the woman in the office hung up on me. I didn't know where to turn, who to call. I cried many, many tears that day...and many more days to come. I was in the tight grip of Grief and it wasn't going to let me go.
Precious weeks went by and then I decided to take Sian to see my GP to express my concerns. Maybe he could help. He handed me a referral which placed Sian on a waiting list at Princess Margaret Hospital. So the waiting began...and so I resigned myself to my new found profession as "waiter". During those early days, it seemed like I was waiting forever for help that never came. After waiting on "waiting lists" for what seemed an eternity, I was told "I'm sorry you've wasted your time because there is no hope for your daughter." No medicine, no cure, no barrage of tests were performed to try to understand how her mind works and explain why she repeats her bizarre rituals for hours on end, why she behaves in irrational ways when I attempt to guide her through simple daily tasks, why she has sensory issues, why she screams out in pain sometimes for no apparent reason, why she can’t talk, why she doesn't sleep much, why her bowels aren’t working as they should, just to name a few examples. They just haven’t got the answers...no one has the answers...and should you dare suggest that the immunisation triggered it, you’re branded a lunatic!
I still recall seeing a top paediatrician here in WA who said "Sorry, there’s nothing I can do..". A neurologist who also said "There’s nothing I can do, see a paediatrician." Round and round it goes. What a merry go round, what a roller coaster ride! I was still in the tight grip of Grief and it wasn't going to let me go of me. Then there was more waiting to have Sian assessed by "the panel" of professionals to get the "official diagnosis" (but that too, is another story...)
Through my own reading and research, I discovered that the 4 hours of therapy a week offered was a joke! Studies in America showed that early detection and invention was most effective with a program of 30 to 40 hours a week of ABA (Applied Behavioural Analysis for those not familiar with the "lingo") therapy was the only proven method of bringing a child with autism out of their own world! Ivar Lovaas is a legend! I don't know where we'd be today without his ground breaking work, research and dedication. His pioneering work and proven research has given us all hope. If they can do it in America, why can't they do it here?
Then as luck would have it, I found a wonderful service provider right herein Perth who actually worked with Lovaas and knew his methods. They knew exactly what to do and after I attended one of their workshops, I happily and gratefully paid for their services privately. Grief had finally lost it's grip and Hope was once again restored. I began with the psychologist report after 3 hours of developmental level testing, a program was written up in detail and two program managers visited Sian in my home to begin the program. I also had a case manager and a team of therapists.
Sian's program was up and running well before "the panel" convened to assess my daughter. After the obvious, her autism diagnosis finally became "official", which meant I was entitled to receive a little financial support from the government in the way of funding to the service provider to pay for the case manager. It was her role to monitor Sian's program on a fortnightly basis. It wasn't much but that was fine with me. Sian progressed very quickly, faster than I could have imagined!
Finally we were on the right road...and eventually, I received the miracle I'd only dreamed about. I am blessed. I am so very fortunate. I am a "waiter" no more. Now I choose to live in the moment. Now I notice the small things. And in awakening to this simplicity, I have found the essence of pure joy. Sian, my beautiful daughter, is the greatest gift of all. She has taught me more about myself and who I am than any one person I've ever known. She has shown me what it truly means to love unconditionally.
I have so much more to say and so much more to share. But before I sign off at this late (or early) hour, I just wanted to say to you once again, those two simple words “Thank You”. I hope it is enough to sustain you because it’s not much. We are, each one of us, warriors for those we love and for those without a voice. Please let me know what your ideas are and how we can make a difference. When we are of one mind, one heart and one voice...like a mexican wave, we CAN change the world.