Home: Ground Zero

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.

With that, I am hoping that all of my research and dedication helps my family and any other families out there who have happened upon Autism and Autismbattle.com.

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.

So, with treasure map in hand, this lady pirate and her gifted first mate have set sail on their journey and the adventure has only just begun.

Thank you for coming here…this is our story.

This is our Autism battle.

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2 comments on “Home: Ground Zero
  1. I’ve read your blog and agree entirely. Before reading it I pretty much knew most of what you said, but, you stated it so eloquently!!
    My personal life has always been about “causes” but, unlike most people, I do not join groups….more like a pirate that strikes and disappears into the fog, flying a flag of my own making. (I assume you’ve read “Rodan” ….how strikingly similar in philosophy!!!)
    There’s a key to this you may be overlooking…..balance. you need that to keep yourself healthy so you can fight on. Additionally, you state that you seek to make your child somewhat functional. (paraphrasing)…I’d be setting a higher goal, but never would be discouraged at a lesser result.
    I have no poloponies*, but you have my support….just ask.
    (*Gleason)

  2. that Sebastian was diagnosed with aitusm, he was 2 years old. It was an extremely difficult time for all of us. But, one thing was clear, we loved Sebastian and we were all willing to do whatever it takes to help him. Unfortunately, we did not know where to begin and what to do. It became clear that Sebastian has extreme difficulty speaking; he cannot speak or communicate with anyone. We then began to conduct research on special speech therapies or treatments that Sebastian can partake in, we tried nearly everything. Sebastian is an admirable boy because he is successfully fighting this battle against aitusm. But, he still has had a difficult time communicating with us over the years. When it appeared as if nothing was going to change, we discovered that Sebastian is intrigued with technology. He finds it extremely interesting. He immediately enthusiastically learned to use the computer. He is very familiar with Apple products especially iPhones and iPods. A friend of my daughter’s brought over an iPad for a school project, and he was instantly hooked, he was appalled at the graphics and the numerous applications. We knew he and the iPad were going to accomplish great things together, as a team. After that day, I began conducting research on the iPad and I discovered the fantastic things it can do for an autistic child. We were excitingly planning to give Sebastian an iPad for his 15th birthday, but then we saw the price. Due to financial problems, I was unsure if we were able to afford such an expensive device. My husband and I both got laid off. Things were not looking good, but then I found this organization and I became optimistic, I thought, “Maybe Sebastian will be learning from an iPad sooner than we think.” So please, don’t let our financial state be an obstacle for my son’s opportunity to learn and communicate. We would be planning to use any applications that are specifically designed for communication. I have faith in the iPad and I know that Sebastian will improve and it will be all thanks to your generosity.

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