"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..

THANK YOU!!!

Review of The Dr. Oz Show "What Causes Autism?"

Preface:

Before we begin this review and debate, let's get my personal view on the issues forefront. I know without a doubt, Jadyne's autism has a genetic factor. My brother has PDD-NOS, my mother's brother spent his childhood bouncing in and out of hospitals for "problem behavior". The list goes down the line. I am very concerned of the genetic component to autism. I worry about my children's children. As far as environmental factors, and more specifically vaccines, I do NOT advocate that parents not vaccinate their children. However, I do find the debate relevant. I find the questions unanswered, the jury still out. Thus, I chose to be cautious vaccinating my last child, JJ. I delayed some of his vaccines in an alternative schedule. I do KNOW autism has a genetic component. I further believe strongly there is an environmental component unidentified as of yet. I do not know if vaccines is that element, but neither do the doctors or scientists! For that reason, the debate needs to continue, the research needs to continue, and parents need to remain informed and cautious with what toxins we introduce to our children's innocent systems. I choose to remain neutral and seek further investigation. My personal feeling is extremism towards either side would be disastrous be it the continuation of blindly vaccinating children without fully understanding the long-term effects of those vaccines or a pandemic of panic leading to a loss of our herd immunity from parents refusing vaccinations. Both will lead to the demise of our future generations. This is a very serious topic!

Staying in the middle isn't the popular approach. I've taken heat from one doctor but even more from other parents. Doctors frown upon their "expertise" being questioned. Some parents have made up their minds that these vaccines ARE the cause, and they discourage anyone vaccinating children. The bottom line is if the fact that I question doctors, that I demand more research, that I choose alternative solutions makes you think I'm a bad mother or don't care about my kids, well personally, I don't give a damn. I don't do this for your approval. Your approval won't make my daughter speak in sentences. Your approval won't ensure my neurotypical (to-date) son doesn't have a child with autism. Your approval or disapproval doesn't change this life for us at all. I do this for them, and as every parent out there, with or without a child with a disability, I do the best job I can with the information I have available.

On Thursday, February 17, 2011, The Dr. Oz Show aired a segment called "What Causes Autism?". The show did an amazing job of putting together a very diverse panel of physicians and scientists and parents. The result was a highly emotionally charged but very useful and informative debate. Even the audience itself was uniquely comprised half of parents of children with autism and half of parents that were concerned their child may have autism.

Click image to enlarge view.

The audience led the most interesting part of the show. These parents aren't rolling over when they seek help and the door slams shut on them. No, these parents all still believe the answer is still out there, and they're fighting with everything they've got to find it. There was a sadness and an anger that resonated with each of the parents' statements. This disorder is damn tough on families! I don't know how it can ever truly be conveyed through words, blogs, videos, or any other form of media. No parent ever wants to hear their child even has strep throat, and those that have to hear their child has a lifelong condition are crushed. The news for autism is presented with even more devastating words, however.

"Your child has a lifelong condition. There is no cure. We don't know what causes it. We don't even really know what it is. It presents differently in each child, so we just call it a spectrum, but that makes it hard to even tell you what to expect. We can't. There is no medicine to help her. Some are being used to treat symptoms but no medicine has been developed for this disorder itself. Your child will live but will not have the ability to interact with the world we live, a permanent emotional vegetative state per se (so the doctors tell you, more on that in a bit!), and while we can't tell you what to expect in your child, we can state that statistics show an overwhelming probability that your relationships will end and you will be financially bankrupt."

I know when Jadyne was diagnosed with epilepsy, there was a different tone with the diagnostic team. They were confident, definitive, and they laid out a whole set of resources and solutions. I left the hospital with a bag filled with pamphlets, brochures, and even charts on epilepsy. Within a week of research, I would know all I needed to with what it was, how to treat it, and felt comfortable that treatment would ensure a normal life for Jadyne. This was not good news for Jadyne but the science was. There were answers. There were medicines, lots of different ones to try even. The insurance companies paid for the treatments. There was even a test to state without doubt this is what she has and this is the TYPE she has. Autism isn't like that. There is no test, there are no medicines, and the literature is minimal. In fact, the list is endless of parents just like me that are out there finding some medium to present this information because even just five years ago it was a struggle to find small answers. The parents are on the front lines, but they must have armor made of kryptonite because they don't go down, no matter how hard the blows are along the way. They stand and fight.

The professionals panel was diverse and very informative. I was excited to see Alison Tepper Singer, the founder of the Autism Science Foundation and mother of Jodi, a now 13 year old girl with autism. (We first met them on "Autism Everyday" when Jodi was eight.) Dr. Bob Sears, author of "The Autism Book" led the debate for the alternative treatment side. The audience cheered him in a few spots of the show. Dr. Ari Brown, spokesperson for the American Academy of Pediatrics, however, was met with let's say a less than welcome response. Dr. Irva Hertz-Picciotto from UC Davis spoke on possible environmental causes of autism. In addition, Dr. Oz had a team of pediatricians present for additional views.

Dr. Hertz-Picciotto's input was unimpressive to me. Yes, autism COULD be caused by mothers living close to the highway, or it COULD be caused by blow-drying our hair or eating bananas or skinny-dipping for all we know. I'm sure if you did a study on millions of things, your results would show an "increased chance" for autism in many brackets. I'm glad she realizes the cause of autism won't be one smoking gun, but her research just didn't have the wow factor I'd hope for with all the funding she receives from the National Institute of Health.

Dr. Ari Brown was definitely in an uncomfortable position. She was met full force with opposition by the emotionally charged audience. Honestly, though, my pity doesn't go far for her. This disorder does not need doctors and associations that have closed their minds to possibilities of the causes. Just because Dr. Wakefield's research has been proven fraudulent does not mean that vaccines still don't attribute to autism. One audience member made a great point by stating that mercury has been extensively researched, but what about aluminum? What about all the other things besides mercury in our vaccines? Dr. Bob Sears offered an alternative to parents of spreading out their child's vaccinations. Dr. Oz stated that he did this for his children. I will admit, I did this for JJ. Instead of him getting his shots on the standard schedule, after consultation with a pediatrician comfortable with alternatives, we chose to delay additional vaccinations until JJ was "out of the water" so to speak with an autism diagnosis.  His doctor was comfortable with this, but warned before school-age we'd have to face the decision if the jury was still out regarding vaccines, but that this would at least give us some more time to "let the science catch up" as he said.  I can't tell you if that's why he doesn't have autism and his sister does, but I can say I'm not sitting here wondering now if the vaccines caused his autism. No, we don't want to lose our herd immunity and not vaccinate any child. However, parents need to know the risks and have the ability to both ensure their child's safety from preventable diseases while not putting them at risk for a lifelong condition.

I don't care what you hear or read. I don't care how the APA or AAP fluffs it up.

THEY CAN NOT (and do not if you listen carefully) SAY WITH ANY GUARANTEE THAT VACCINATIONS DO NOT ATTRIBUTE TO THE RISE IN AUTISM

They can say Dr. Wakefield's research is fraudulent. They can say over 20 studies have stated that vaccines don't cause autism, but as Dr. Sears pointed out, 18 of those studies were conducted by pharmaceutical companies. I was irate at Dr. Brown's response to Dr. Oz's question when he pointed out there are studies and campaigns on newborn HIV and so many other things, so where is the effort into autism?! Her response was the dodging response of any politician. "It's there. We do care about kids." If it's there, why aren't you more specific? Truth is it's not there in any capacity that will have an impact for our kids. It's not financially reasonable for the medical industry to spend money on research for a disorder and then lose money if a cause is found not to be treatable with their medicines and worse yet if the cause if found to BE their medicines. My response to that is simple. I don't care about the medical industry's finances anymore than they care about the financial bankruptcy of all these families with autism. Fix it!

Dr. Bob Sears gives us all hope that some doctors still seek truth. He offers patients alternative vaccination schedules. He encourages a gluten-free/casein-free diet. I'd take any of my kids to him with confidence! I love doctors that say, "We just don't know." How about it? We just don't know. That's the truth. The truth is not a doctor trying to strong-arm a parent into a decision by stating results of studies that suit their viewpoint. The jury is still out. That's the truth. So while we continue research, let's err on the side of caution.

Alison Tepper Singer was my favorite part of the show. I can't say I disagree with one thing she said. She respects the science, studies the science, works for new science, and she also lives this life every single day. She has a unique position of seeing both sides of the debate with a clarity we could all only dream. I feel confident her research will lead to answers. I urge anyone to donate to the Autism Research Foundation.

Autism Speaks declined to go on the show because they wanted to talk about insurance reform and treatments for those that have autism. I will say, while I am tremendously grateful for Autism Speaks, I found this disturbing. I'd have to agree with Dr. Oz, "How do we get there unless we start here?" Autism Speaks's position reminded me of Jadyne's pediatrician when her tests results first started coming back, "Don't worry about why, just worry about treatment." If I had followed his advice, she still wouldn't have a diagnosis. Please understand the tremendous positive impact Autism Speaks has day in and day out. I in no way am bashing this amazing organization or their focus. However, I didn't find their response appropriate in this one instance. I believe Autism Speaks is a priceless resource for the Autism Community, and I would have liked to hear their part in this debate.

All in all, thank you Dr. Oz for leading this very balanced debate. The more exposure we have to these topics, the more people will care, the more people will act.

Click here to watch Part 1: Three families share their stories and their struggles.

Click here to watch Part 2: Are vaccines to blame?

Click here to watch Part 3: Pediatricians discuss where they stand on vaccines.

Click here to watch Part 4: Dr. Oz reveals what he did for his own children.

Click here to watch Part 5: The role of environmental risk factors.

Click here to watch Part 6: Older mothers and autism – is there a link?

Click here to watch Part 7: Warning signs every parent should know.

(All links will open a new window on http://www.doctoroz.com)