Sunday, February 20, 2011

"The Wind Beneath My Wings"

Believe it or not, once upon a time, I was a cumbersome, confused, and timid parent. I knew something just wasn't right, but I still walked out of that doctor’s office time and again that first year feeling some sick sense of relief that since he told me my little girl was still in the normal range then it must be true. Well, just how did I get from there to here?

My first “teammate” in this journey was my grandmother. It was shot day for Jadyne. In fact, if my stress-strained memory serves me right, I believe Jadyne was about six months old. My grandmother came to the doctor’s office to see her great-grandbabies. Both my cousin and I saw the same pediatrician, and that day we had simultaneous appointments. My grandmother didn’t have that grimace face out of pity for Jadyne’s tears, though. There were no tears. No, her grimace was a look of shock and wonder. This was no “tough kid” as our pediatrician had been claiming. “Jackie, that’s not normal for a baby not to cry getting shots. Something’s wrong with her!” my grandmother exclaimed. Still I had no clue, not even a guess at that time, what was the cause, but at least now, I wasn't the only one seeing a problem. Thank you, Gram.

A few months later, after switching pediatricians, and after formal audiology and pathology would confirm there was some problem definitely present, we started Early Intervention. These therapists were amazing! They didn’t just do their jobs, they loved their jobs. They were underpaid; their cars were beat to hell and back from all the travel; they were overqualified; and they were miracles for Jadyne. Jadyne was 14 months old by the time they were brought in, and for 12 of those 14 months, I had been chirping (ever so quietly) that something just wasn’t right. After just the initial visit, the early intervention staff gave me a new phrase—Defensive Sensory Integration Disorder. It didn’t count as a “real” diagnosis because it didn’t come from an “expert” with fancy letters like PhD or MD after his name, but to me it was golden, to me it was a tangible opponent. I was no longer fighting a ghost. In the future months and years, the early intervention staff would lean heavily on the consideration of autism. In fact, although they were denied over and over by the doctors any diagnosis whatsoever for Jadyne, the early intervention staff began treating her for autism anyway. The early intervention staff introduced us to the Wilbarger Treatment and helped us implement it. Jadyne emerged. They also helped me to deal with the new offensive sensory behaviors, to recognize that Jadyne’s “behaviors” were really just reactions to her stimuli in this world. There is a small window of opportunity that we have to reach these kids. Thank you, Valerie, Amy, and Julie.

Unfortunately Early Intervention was only available from birth to three in my area. I was able to attain an Autism Spectrum Disorder diagnosis of PDD-NOS when Jadyne was four years old. Within six months, that diagnosis would change to autism. My next hero in this story is a particular school. My company had me stationed in southern Ohio. The Early Learning Center in South Point, OH was, and is to this day, the best traditional education system I have ever encountered. They didn’t delay the process by requesting all their own evaluations. They simply accepted the myriad of evaluations Jadyne already had. She was in school within a couple days after calling them. They didn’t fight about a bus. No, riding a full size bus and providing her an aide were a given. The teachers were phenomenal. You could just tell how much they loved these kids. The school had a "blue room" with sensory and physical therapy equipment. Children weren’t scolded or punished when they were acting out; they were taken to the sensory room to relax and calm down. Jadyne even had a friend there. If one single school could produce even half the rapport and results of the staff of this school, Jadyne would probably still be in a traditional school setting. ELC let me know that traditional schools can provide an extraordinary educational experience for children with autism. Thank you.

Somewhere in this time, I joined a budding organization through Myspace called Banish Autism Discrimination (B.A.D. Moms). I loved the feisty, tenacious mindset of the founder, Kimmie. She was sick and tired of the discrimination her son faced in even the most innocent of public places, like a movie theater. She had enough, and she was speaking out, and others were listening. The organization flourished. The stories poured in of similar discrimination stories. B.A.D. moms began to join together with a newfound herd power. Letters and calls would flood an offender’s place of business. No matter how big that organization got, Kimmie always took the time to respond to personal messages. I probably owe her a mansion in the amount of time she put into guiding me towards answers for Jadyne during those early years. I try to "pay it forward" now through things like this blog. She is simply brilliant. Through her, I learned to stand and fight. B.A.D. Moms gave me the ability and know-how to research answers until I found them. They groomed me into the advocate I am today. Thank you, B.A.D. Moms.

It took a tremendous amount of support from family, organizations, and professionals to get us through. That need is never satisfied. I still maintain my involvement in support organizations and my hunt for new information and products. If that was how I got here, let’s look at where I am now, and what keeps me from falling flat on my face today.

Parents with multiple children and busy schedules can find the task of going to a support group daunting. It’s not that we don’t realize the power in numbers of people experiencing our same life. It’s just that it’s so tough to coordinate the ability to go to a traditional support setting. The World Autism Community does a stunning job of resolving that issue for parents. I consider it kind of the “Facebook” for the Autism Community. After you register (100% free site), you are given the ability to join various forum groups on specific topics like “Therapies”, “Multimedia”, and “You Gotta Laugh”, just to name a few. Parents from all over offer advice on any topic you throw at them. If you’re affected by Autism Spectrum Disorders and you’re feeling overwhelmed and alone, please know you are not alone and come join us on The World Autism Community. Even if you feel like you got it all together, still join us. You could make the difference in someone’s life today.

For years, I’ve dreaded trying to find HONEST information on autism. As a parent on the front lines, it’s imperative I receive accurate intelligence, but when the big dollar pharmaceutical companies and organizations like the American Academy of Pediatrics get involved, the mainstreamed news circuit can be flooded with a “cereal box” tone.

Silly news show, “Trix are for kids!”

When the news story of Wakefield’s research broke, I was irate. Suddenly, people were talking about autism, finally. However, no one was talking about the successful 1322 hidden cases in the US Vaccine Court where the courts ruled vaccines had caused brain damage, including autism. Let's pause for a second. Say that number aloud. One THOUSAND three hundred twenty-two cases PROVEN, not in some backwoods no-name town court, but the UNITED STATES court that vaccines (which particular one and what particular element is still up for debate) have caused brain damage, including autism. No one was talking about the book “Don’t Drink Your Milk!” written by the Director of the Department of Pediatrics at Johns Hopkins School of Medicine and Physician-in-Chief of the Johns Hopkins Children's Center. No one was talking about the way these kids fall through every crack—insurance that doesn’t pay, doctors that don’t listen, medicine that doesn’t exist, schools that can’t produce, and on and on. No, instead a deluge of attacks on cautious vaccinators flooded the national news and social media sites. No one was talking......except a few, a few organizations like Generation Rescue, Age of Autism, and 14 Studies pressed forward in a crusade for truth.

I still check the national news and “majority” viewpoints. I do it to stay balanced. However, when I want to hear the real truth, I go to Age of Autism. It’s a no–frills, no “trix”, and reliable resource for families affected by this disorder. They’re not afraid to ruffle some feathers. That’s what journalism was supposed to be about, the truth. When did it become about giving the public what they want to hear? Aren’t there soap operas still on television for the fantasy-minded individuals? Thank you, Age of Autism, for meticulously addressing and correcting the “cereal box” media. We need more like you!

To my family, my friends, to Early Intervention Specialists, to B.A.D. Moms, to the Early Learning Center, to The World Autism Community, and to Age of Autism..



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