“He’s lost inside no more than you”
April 1, 2007 by Kristina Chew, PhD
Filed under Health
Eleanor and Mark Tremblay believe that their now eight-year-old son Oliver is autistic due to a vaccine, as noted at the start of a story on vaccines and their critics on today’s CBS News. The Tremblays “have trouble looking” at Oliver without thinking “if only……” to themselves—if only, they had not have had him vaccinated; they are one among 4,700 families suing the federal government, as they claim that the mercury-based preservative thimerasol caused Oliver to become autistic. The trial is set to begin in June.
Nonetheless, the Tremblays note that they are “not against” vaccines:
“Well, we just did, you know, what parents are supposed to do, what the pediatrician tells you to do,” Eleanor Tremblay said.
………..“We’re definitely the unlucky ones,” [she] said. “Without a doubt.”
“We’re not alone, though,” Mark Tremblay said.
Not alone in the search for an answer to the question, if children are soldiers in the war against infectious diseases, was their child a casualty? A victim of friendly fire?
The Tremblays’ statements speak to why, despite there being no credible scientific evidence for a link between vaccines and autism, the belief—the “gut feeling“—persists in some parents of autistic children, and hangs over the heads of parents with young, yet to be vaccinated children. It is not rational, but parents think: This is my child and I, as her or his parent, have to protect her or him—have to give her or him every chance—cannot “sacrifice” her or his future to science and some abstract notion of “the greater good.” As Kev writes on Left Brain/Right Brain regarding the MMR/autism controversy,
When the media and ‘scientists’ continue to express certainty despite having absolutely no evidence that MMR causes autism its hard to get past the guilt. I know. That’s how I felt as well.
Sometimes I think the tenacious belief of some concerning theories about vaccines or the MMR causing a child to become autistic is the sad legacy of an older theory of autism aetiology, that bad parenting causes autism. Still smarting—still stung—by the stigmatizing echoes of the refrigerator mothers theory of autism, parents today seek a reason for a child being autistic that locates the source of the blame as far from themselves as possible: In an external agent, such as poisoning from heavy metals or from mercury. Genetic theories of autism’s cause are then discounted or muted by saying that a child has a “genetic predisposition” to autism that is exacerbated by environmental pollution or other factors.
It seems to me that the solution—the remedy—for these beliefs is not to be found in lawsuits; the numerous media reports that speculate about a vaccine-autism link are only going to fan the flames. To consider oneself “unlucky” to have the child that is one’s own—”whatever” that child has or is—-puzzles me, and makes me feel that what we need most of all is not more lawsuits, more studies with semi- or inconlusive results, but simply more understanding:
there’s a boy inside who’s having fun
of a different kind than anyone
he’s lost inside no more than you
These lyrics are from “Understanding,” which is one of the Songs of the Spectrum written by autism parent and New York Times reporter John O’Neil and sung by The Cucumbers, Jon Fried and Deena Shoshkes. Songs of the Spectrum hopes to raise funds for Autism Speaks which, as I have written, is not an organization whose view of autism that I agree with in many ways. But the songs, reflective and a bit sad, but also upbeat and jouyous and (ultimately, I think) embracing of what is great about our autistic kids, speak to the emotions that autism parents such as Mr. O’Neil the Tremblays and myself and so many others feel, whatever think of curing or treating autism.
Acceptance and understanding, compassion and love and hope: Those are always part of the music of my days with Charlie, a boy whom I am always, always very lucky to call my son, the singer of his own song of understanding, and not at all lost—it is thanks to Charlie that I have found my way.
Don’t know about the music exactly, but the lines of the lyrics look spot on to me.
Cheers
“Acceptance and understanding, compassion and love and hope: Those are always part of the music of my days with Charlie, a boy whom I am always, always very lucky to call my son, the singer of his own song of understanding, and not at all lost- it is thanks to Charlie that I have found my way.”
Beautiful sentiments indeed, and ones which I can sincerely relate to also, Kristina.
I really feel that my son Mark, has given me so much more than I can ever give him!
Through him I have learnt to be more patient, tolerant and understanding.
I have learnt not to be afraid and to be more accepting of others, disabled or not.
I often think that we ALL really have some form of disability. Only much of the time it is not evident on the outside.
Twenty minutes ago I took Mark to school.
He was so excited.
His face was beaming.
” We go to school now” he says.
” We open the red door.” .. he smiles
(His classroom has a red door, and he will often prefix things with their colour)
That smile’s still with me in my mind’s eye.
And the joy I am feeling as I type this response is..
Well…..you know what I mean Kristina.
You just can’t beat it eh?
And if I were a little younger I reckon I’d be doing cartwheels right at this very moment!!!
The music is folk folk-rock — not bad for a few cartwheels. (I can’t even do a proper somersault, to be too honest.)
But jumping for joy in more symbolic ways for Mark and you!
“there’s a boy inside who’s having fun
of a different kind than anyone
he’s lost inside no more than you”
That’s what I’m saying, constantly, to people. I love my boys and their lives on the spectrum have enlightened me beyond belief. They need no cure, only understanding.
Thank you for your intelligent work and blog posts in the realm of autism spectrum disorders.
I’m linking here.
I am confused that aparent would consider themselves unlucky to have a child, any child. I have three only my middle child and only daughter has autism. All three present very unique challenges for us and are completely different. I consider myself extremely fortunate to be their mother. My husband Joe and I have talked about wether or not we would even want Rebekah to be different. We have both agreed that we wish things were easier for her at times. She seems to have to work soo hard to do what others to with little effort. But We agree that she is a wonderful loving child who has taught us so much. We appreciate ever milestone that ALL of our children reach with such excitement it cant help but rub off on them She has taught us not to judge others and to treat everyone we meet with respect and dignity. All of my years working with disabled children has no taught me nearly what I have learned from her. Her “quirky” behavior is so much a part of her I can not imagine her without it. I would like to offer her the best life that she is capable of and as much assistance as I can. Lets be honest tho Who’s life is without struugle and difficulty. I makes me sad that so many choose to focus on the negatives instead of finding the positives. I choose to enjoy every minute I have with them for it will be gone before I know it. I would choose not to change Rebekah but help her be the best Rebekah that she can.
“I would choose not to change Rebekah but help her be the best Rebekah that she can.”
My seconds to this!
I would never consider changing my son, Jackson, for all the money in the world. His perspective is one of innocence and wonder and he brings a perspective to us that we would have lost long ago. While he is lost inside no more than me, it would be a disservice to all of us were he “typical”.