My youngest son was born on his brother’s birthday, August 8. What appeared to be an extremely well mannered and easy baby…possessing unique talents and abilities in some areas quite early, suddenly stopped developing, and even lost skills during his second year.
At 26 months, 10/10/08, following 14 months of ignored concerns, my youngest son was diagnosed by a Pediatric Neurologist with Autistic Disorders, eight days after his brother’s diagnosis of other Spectrum Disorders.
All 4 of my children are extrodinarily gifted, incredibly talented and remarkably beautiful. My oldest daughter has given me three perfect grandchildren. Her youngest boy, who shares the same birthday as his uncles, is ear marked for Toddler bi-polar. Two of my other children, 18 and 16, also ear marked for bi-polar disorder. They are all created exactly as they were supposed to be; perfect.
I am a woman posessing higher than average levels of testosterone. I was a sort of ‘Tom boy’ who carried a ‘living on the edge’, type A, throw caution to the wind personality. A ‘dare’ to me presented a no turning backchallenge. “She’ll never do the high wire”, “there will never be a female ringmaster”, “you’ll never got to law school”, or just, ‘you’ll never be able to….,” were all words that helped to shape my life’s goals.
The turning point followed seven ridiculous months of an already disproven fad diet. (Thanks, Jen). In a discussion with my dad about how little the baby was eating, he questioned what I was doing while reminding me that without a healthy body, his brain had no chance. Wham! Like lifting my head up into a forgotten open cupboard door, it struck me. Ouch! I realized that my fear of Autism was overpowering my own ability to think, learn, research and decide FOR MYSELF. Fear is a direct result of ignorance. This was not like me. I was clearly being ignorant and long overdue to ‘hit the books.’
AUTISM has been sent into my life as a challenge that I have taken more seriously than I have any other. I am lucky. Instead of the empty nest syndrome setting in with all of the ‘trying to relive my lost years’ mischiefs and griefs, I am ecstatically honored to have this Autism GPS for eternity. To date, I have over 3,200 hours of study and practice…and have only just scratched the surface. I cannot seem to get enough. My entire life and all it’s eccentricities finally makes complete sense.
My show business background and lifestyle have been unique…to say the least… but on the contrary, I have also been long known as having a rather typical ‘girl next door’ personality. Apart from an extremely high metabolism, a knack for doing ‘man’s work’ and what seems to be the ability to function on rarely more than 2 hours of sleep…I have never felt ‘out of the ordinary.’ I have, however, led a remarkably sensational life…and my calling in Autism is bringing every bit of me and my talents into one single, wondrous focus. I can understand now why it was Jim Carey and not a glass of rice milk that changed a boys life. I am in part, applying that logic.
So many of the talented people I have worked with in my life would also make great caregivers for Autistic children. (Is everybody listening?) The ability to think and be ‘outside the box’ is proving to be my greatest asset.
Autismbattle.com however, is about my baby’s story, path, journey, struggles, gifts, successes, therapies, disabilities and more importantly, Abilities. I have sworn to continue writing here until he can continue to update the world himself.
My life is and has always been my children. I live alone again because their needs will always come before those of any man or anyone. Their fathers had ‘other agendas’ which took priority. (ignorance, cough, denial, cough, cough…). So, I have gladly shirked my comfortable world to embrace a vow of poverty in order to battle side by side with and for my youngest. I am so glad that my dad stopped the mindless path of acceptance that I was on.
Now, I feel much like a pirate setting her sights and sails on the horizon, unafraid and eager to devour whatever rough seas and adventures that lay ahead. Fear is gone.
Looking back, in my opinion, I can see that two of my brothers would more likely than not be diagnosed with Asperger’s Syndrome, (a high functioning Autism diagnosis, though still Autism), and at least four of my son’s paternal relations possess Spectrum disorders as well, while dad has extreme anger, addiction and what he believes to be ADD issues. All have been rendered dysfunctional in many aspects of their lives, though never diagnosed or diagnosed correctly. Have the numbers risen or is it just that screening has improved? I say BOTH.
I miss my older children and being there for them like I had always thought I would be. I am not angry with my two teens for leaving the baby and me. 24/7 dedicated therapy is hard enough after you’ve lived most of your life and it IS your responsibility…but imagine how hard being a sibling of an Autistic child can be. You have to be completely accountable and selfless while your irresponsible teen brain, (and hormones), are yelling, me, me, me! The real disappointments were the abuse and abandonment by their father(s). There’s no excuse.
My life is to prepare the baby for the time when he will need to depend on the community and his siblings. The work we are doing now will make it easier and HAPPIER for all of them. My special son will need ‘protected’ living. I know they will be there for him then. I could not go to my demise being a mortgagee with the regret that this little angel’s life could have been made functional and happy if I hadn’t made the personal choices I have. The banks have taken everyone else’s houses, they can now add mine to their collection. The place where we lived had no resources…we had to move away.
Thank you for coming here…this is our story.
This is our Autism battle.