RE: Stories needed for a 4 page spread for Jane Worthington from the Woman's Day magazine

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.

Thank you.

Stephanie Brown

This was Jane worthington's reply:

From: Worthington, Jane [mailto:JWorthington@acpmagazines.com.au]
Sent: Tuesday, 30 March 2010 10:29 AM
To: mattsteph
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

Jane Worthington,
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:cnvnr@a4.org.au]
Sent: Wednesday, 31 March 2010 5:35 PM
To: mattsteph
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.

Stephanie Brown

Forums: 

Ideas on how to improve "the system"

Continued on from yesterday, this is Bob Buckly's reply:

Hi Stephanie,
Writing on the A4 website is better than OK (A4 Update is the newsletter I send out ... and I will add your letter to the Update/newsletter as well since many people do not look at the website). Thank you for your very kind words ... and support. We (A4's management team) don't get a lot of them, but the ones we do get are mostly positive and they do sustain us.
I met with Bill Shorten this morning and gave him a comprehensive briefing paper. The political process is complicated ... both he and I are trying hard to figure out how to get results.
Again, thanks for your encouragement. And I hope it continues to go well for Sian and you.

And this is my response:

Dear Bob Buckley

I hope all goes well and that you, together with Bill Shorten can get results. I have dealt with policy makers and politicians before and therefore have some understanding of the ins and outs of the process and have had the frustrating experience that current policies are followed to the letter of the law. There is a very wise saying “Rules are for the obedience of fools and the guidance of wise men.”

Policy should used to GUIDE these so called “wise men” so they can create better and more flexible choices and options available to the ordinary citizen based on the facts presented before them. And I know from past letters that I have received from Canberra (I have them on file if you’re interested in reading them), where even their so called facts are not truths…the Bureau of Statistics, Medicare and Centrelink desperately need to update their figures and information to provide government with the bigger picture of reality across our nation. This is the new millennium after all. With the technological advances of today, there should be no reason why this information shouldn’t be available right at their fingertips and ours.

Anyway, enough of stating the obvious. These are things I’m sure you’re very aware of. I admire your patience amidst the quagmire of interminable government bureaucracy. I have several quite easy simple and practical ideas that I’d like to put forward to you. I have put them forward many times before but as usual, the issue is sidestepped in great political style. so I keep writing letters and keep putting it out there to the universe in the vain hope that one day the blind will see and the deaf will hear. Then, perhaps someone in power will have the courage and fortitude to take action and make the changes we desperately need.

1. Medicare; every Australian citizen has one of these and this entitles us to healthcare. Recognised Service Providers including Behavioural Therapists who are trained and accredited by recognised service providers should be funded by the Medicare system. This would provide access to services for all, not just those with the means to pay the bills no matter what the cost…because the costs to the government are far greater in the long term. Why should those who cannot afford services be disadvantaged? Imagine if all we had to do, was hand over our Medicare card (as you doing when seeing a doctor), and the service provider takes an imprint, makes a log of services provided which are signed off so they can be claimed back through Medicare system.

2. Private Health Insurance companies also need to recognise that that Behavioural Therapists who are trained and accredited by recognised service providers are professionals too and should be listed as such and covered by Health Insurance premiums. I know there is always a “gap” but partial funding of these most expensive visits by them of up to 30 to 40 hours a week are vital services and give our children the best chance of recovery. Imagine if all you had to do was hand your health insurance card over, the provider takes an imprint, makes a log of services provided and then claims them back through Private Health Insurance Companies.

3. A requirement of every childcare centre should be to employ at least one full time Behavioural Therapist who has been trained in ABA by a recognised course before a childcare centre is officially opened for business. TAFE and other educational institutions need to recognise this need and provide courses to teacher’s and teacher’s aides in schools. They need to be suitably qualified in ABA (not just psychology as they have no idea…I was the one teaching her!) to encourage rapid improvement and integration into mainstream classrooms.

4. There should be information made available to parents and guardians about the possibility of accessing their Superannuation early to pay for services for their child. I would have most definitely taken this option if I had known it was available to me.

This is just the tip of the iceberg. Awareness and openness to “different abilities” instead of “disabilities” is the key to unlocking the best possible future for our children and our nation as a whole. There are Einsteins walking in our midst but when will the blind really see beyond ASD to the limitless potential of all they can be? When will our nation’s expectation of what is defined as “normal” change? It is my grandest hope to see an amazing person with ASD get voted into parliament and then I will smile and finally, I will have hope for the brightest future imaginable.

Thank you A4. Please keep up the good work.

Stephanie Brown