
May is Autism Awareness month, and I'd love everyone's support if you could. As many people here know Kayne has Autism, he is diagnosed as having Sever Autism and a mild Intellectual Impairment (though the specialist believes that Kayne will loose his II label by middle school). It is a hard road to walk, and it's lonely (particularly as a single parent), there are very little services, there are so many myths and misunderstandings about Autism that you seem to not only be battling Autism, but also ignorant people who apparently have nothing better to do than you criticize everything you do, and spread lies and ignorance about the disorder.
Kayne was diagnosed when he was about 22mth old with Pervasive Development Disorder - Not Otherwise Specified (PDD-NOS) which is a general term used to diagnose young children suspected of ASD in order to get them 'in to the system' and start interventions. At 2.5yrs we finally got the diagnosis of Sever Kanner Autism with a moderate II. Ever since then it has been an heartbreaking road, with more downs then there have been ups. I am scared of the world that seems to have no room for the 'imperfect' of humans. When I found out I was pregnant it was the most wonderful news I could have ever gotten, no doubt I found out at a time which was extremely stressful for myself, but I felt blessed that I would bring this new life into this world. I had so many dreams for him, the usual dreams, what would he be like, what would he like, dislike, what would he want to be when he grew up, he would get married/be in a partnership, and have kids of his own, all normal dreams and aspirations that any parent has. Then with the words, "Your child has Autism", my whole life crashed down around me. No longer was my dreams about what he would be when he grew up or get married have children, but would my son ever talk, read, write? Would I ever get to hear those precious words, "I love you mum?". What kind of a life is he going to lead, what hardships lay ahead of him? Would he be able to go to a 'normal' school, would he stop self harming, would his incontrollable rage be able to be controlled? Would he even be able to live independently, let alone have a relationship and children of his own? How would the world treat him? Is there a place in this world for children like Kayne? I love my son with all my heart, but it isn't enough to make him better, it isn't enough to help him understand the world any better, it isn't enough to understand why the other kids make fun of him - it isn't enough to make him 'normal'! Will it be enough to help him through his most darkest hours? And dark hours there will be plenty! Kayne already knows he is different to other kids, he doesn't understand why though.
Every 20 minutes a child is diagnosed with Autism. 1 in 150 children are diagnosed with Autism, boys are 4 times more likely to be diagnosed with Autism than girls. Autism effects more children than cancer, diabetes and aids combined, yet only gets 5% of the funding for research and services. I was extremely lucky, being well known and respected in the Community Services Sector and Disability Sector, I knew what strings to pull and what people to see, and how to get the most out of the system, and I unashamedly used every connection I had in order to get the funding and support that Kayne needed, I will not apologize for using the resources that I had. Even with all the strings I pull and the names I dropped and the 'favors' that I got paid back, I still had to personally fund a major proportion myself in order to get Kayne the services/interventions he required. I can only imagine what it is like for families that don't have the connections that I have or the resources to fund private services/interventions. The public lists are phenomenal, I'd probably still be waiting for a diagnosis if I had of gone in the public sector.
There is currently a petition for 1000 hours of Early Intervention Programs for Pre School aged children. The Commonwealth Government’s Best Practice Guidelines state that “A program needs to be of at least 20 hours per week over an extended period of at least two years”. This equates to 1000 hours per year for 2 years. You can only receive this level of services if you are extremely lucky (like myself) and/or can fund it personally (I believe the full cost is $40000+ per year). It doesn't cost anything but a few minutes of your time, just register your support! Please help support children with Autism. Kayne is not stupid, dumb or unable to learn. He is bright, inquisitive, sensitive, and has proven many a medical 'professional' wrong. He can learn, and he deserves the chance to try and lead a fulfilling and as close to normal life as anyone, as do the thousands of other children out there suffering from Autism.
If you could please find it in your heart to visit
http://www.1000hours.com.au/ and fill out the registration form to support this vital and necessary service. It costs nothing but a few minutes of your time, and would mean the world to Kayne, and myself, and the many, many other families out there effected my autism.
Saturday, May 10, 2008
Posted by *Mandy* at 6:51 AM
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