By Anne Dachel
After reading the Thinking Moms’ Revolution, I know one thing: this is our book. The twenty-three moms and one dad included in TMR tell all our stories to some degree. And they are THINKING. They question, they research, they dispute, and they discover. The title is a perfect one for what these people do.
As we all know, no two autistic children are exactly alike and neither are their parents’ experiences. There are however, lots of common threads revealed in the book. There are the accounts of the bubbling excitement and great expectations parents had when their children were born and the disbelief and fear in the face of regression and developmental stops. There are the doctors who failed to understand what autism is doing to our children or to provide real help to parents.
TMR is also about hope and success. It’s moms who struck out on their own to find answers and did it. It was the Internet that was their lifeline. There they found resources and support groups like the Thinking Moms, the National Autism Association, Age of Autism, and Talk About Curing Autism. Most of all, they made connections with other parents that empowered and informed them. The computer provided the education they needed. Moms learned about homeopathy, organic food, supplements and special diets.
“Homeopathy brought speech, receptive language, cognitive gains and increased awareness.”
“Within a few months of the diet and supplementation, O went from no language to stringing three and four words together. It was working! We never looked back.” p. 32
They found out there were real doctors out there who would listen to them and treat the whole child.
“Most autism parents discover early on that they know more about autism and treating it than their pediatricians do. While that can be uncomfortable, the really good pediatricians learn from you and go on to help other patients heal and thrive.” p. 15
And yes, there are lots of accounts of vaccine damage. One was on the first page of the first story.
“I know there are thousands of other people out there …and we’re all saying the thing. ‘The vaccines did it!’ There…I feel better already.”
And there were others:
“He was vaccinated against [measles], varicella, and hepatitis B all at the time. He went from a babbling, happy 12-month-old baby to a 13 month-old baby who stopped babbling, stopped saying mama and dada, lost all eye contact and stopped smiling. He wouldn’t respond to his name.” p. 37
“He received his first round of the MMR vaccine. The following week…D spiked a very high fever that lasted a week. We spent most of that week in the emergency room. …Doctors couldn’t figure out what was happening. …When the fever finally went down, my son woke up a different person. He would run endlessly in circles, making this weird humming sound that we had never heard before. He ran around our living room table for hours on end.” p. 100
“After a little over a year of sweet healthy babyhood, Nick began to look anything but typical. Nick’s health and development began to fall off sharply after his fifteen month vaccines (DTaP, MMR, and Hib). …I had a conversation going on in the back of my head all day: ‘Why is he just spinning the wheels on the toy cars he used to play with?’ ‘Why is he screaming so much?’ ‘When did he suddenly become so unhappy all the time?’ ‘What’s up with the yellow, stinky diarrhea?’ ‘Why is he sitting, staring into space?’ ‘When was the last time I heard him speak? My God, I think he stopped talking!’” p. 118
We can read about the lexicon that comes with autism. These are words like apraxia, dyspraxia, PANDAS, echolalia, pica, and projectile vomit. Autism is not a simple disorder.
There’s plenty of emotion too.
“I truly hate that stupid made-up word [autism] that describes a bunch of behaviors. A useless official ‘ism’ created to cover up the greatest injustice ever perpetrated on mankind. Autism is a cruel, unnecessary medical disease born of the quest for extreme profit.” p. 79
“Ronan has taught me more than I ever expected to learn as a parent. Even though I really only thought I’d be a mommy for this child, Ronan turned me into someone stronger and braver.” p. 148
“I’m jittery, I’m nervous. I look at the calendar, flip through the months. Panic sets in. Time is going by and I need progress. Every birthday that goes by, I die a little more inside.” p. 186
“I wish there were more doctors out there who really and truly understand that our children are sick. Children are supposed to develop on track, and when they don’t, it means that something is wrong. It isn’t ‘just autism,’ as so many of the physicians we go to looking for answers tell us. p. 278
“The truth as I see it is that greed has poisoned our children, plain and simple. My son is a victim of greed, the motivating force behind a pharmaceutical industry that profits from making people sick so it can sell more meds that make us sicker.” p. 292
Most important, there’s hope. There are stories about kids getting better. Kids who learn to talk and no longer have chronic diarrhea or constipation. Kids who start to make eye contact and are happy. Kids who get bumped up to regular ed classrooms.
As I read, I kept thinking about what my story would sound like. I know I’d talk about being lost and helpless for so long. If things seem overwhelming today, back 25 years ago when autism entered my life, it was even worse. John was in the first wave. When he could barely talk, no one was alarmed. He was in speech therapy at age three but no one could tell me why he hardly ever spoke. Then in second grade, after struggling for three years, I was told he was autistic. They had to get a psychologist from Minneapolis for that pronouncement. She observed him the classroom and met with my husband and me. “Your son has something called autism. He’s very limited. We don’t know if he’ll ever be able to live independently or hold down a job. It’s so rare that there’s probably not another autistic child here in Chippewa Falls.”
"You mean like Rain Man?" And I cried all the way home.
I remember the talk so well. I wonder what that woman thinks now that there are autistic children in every school in town.
The stories in TMR are a testimonial to the epidemic and the families who live with it. They struggle incredibly. The costs are massive and the stress unimaginable. But still they persevere. And they will triumph in the end.
One mom’s words really rang true for me. “Who knows specifically why her son or my daughter is affected. Why me? Well, then again…why not me? Perhaps my child was chosen because I will be part of the ranks to search every corner of the universe for a way to heal her and others like her. Perhaps because I am someone who will not be bullied into silence and will fight hard for what is best for her. …Perhaps kids with autism are here to make us become responsible inhabitants on the earth. There are so many food allergies and chemical sensitivities that perhaps these kids are here to green the earth and bring us back to responsible, sustainable living. …Who knows what specifically makes one child vulnerable and not another. One thing is for sure: autism statistics are on the rise, and it is terrifying. Something must be done.” pp. 16-17
One of the moms in the book, Megan Davenhall, was interviewed on FOX 5 News WTTG Washington DC .
You can purchase the book at your local bookseller or through Amazon.com.
Anne Dachel is Media Editor for Age of Autism.