"Look! There's our silver lining." My friend pointed to the blackened sky, the full moon hidden by swollen clouds yet rimming their tops in silver. It was Saturday night and I'd driven The Divorce Mobile, top down–my friend riding shot gun–down to south of Nashville to a Mayberry-like community where California music business types retire and yuck it up with the local yocals. One of Nashville's best art galleries is a town hub and twice a year the owner puts out a fine spread of grub, hires a stellar band (this is Nashville,) and throws a grand party. And the art never disappoints either.
Like me, my friend never lets a chance to cut the rug–or the lawn, in this case–pass her by. A third person joined us and eventually a few others. We urged the wall flowers there–those tapping their toes and trying to jig while stayed glued to their seat–to join us. "No," declined one woman. And then, a few moments later, she came to me as I stood at the drink table, having run into some late arriving friends. "Here, my brother will dance with you," she said. She pointed to him, he looked at me. I looked at him….Hmmm. Cute guy. We joked around a bit and then he asked me to join him for a dance. Very limber. Very uninhibited. Did I mention cute?
Then the party ended. Too soon. He was in this sweet spot that night in search of land and I mentioned I had a lead for him. He grinned and said, there was a reason for us to meet that night. And then, a few moments later I turned to my late-arriving friends again and told them the latest about Grace's art–invitations to show in New York, Washington and possibly Florida. Turning to cute guy, I gave him the context: "My teen daughter has autism and is an artist," I said. He looked at me and grinned again. "There's another reason we were supposed to meet. I have a cure for your daughter."…Suddenly the mood dampened, my face, I'm sure, grew hard, my smile disappeared and though I'm pretty aware of my own body language, I stood there most of the rest of the evening with arms crossed or in some form of "cutting off."
I am intentionally sparing the details of what this supposed cure was, but cute guy's sibling came along and the two of them proceeded to repeatedly interrupt me as I attempted to answer their questions and explain some about our history. My late-arriving friends stood there rapt. Watching. Listening. At one point, one of the friends said: "I bet you've heard this a lot." Yes. I have, I told her.
Yes, I have. So many times. Though I think the last time was probably three years ago–someone selling organic frozen food–had tried to hawk a cure for my daughter's autism. In 14 years, I've seen cures du jour come and go: hug therapy, shadow therapy and patterning. Actually, those three predate me. And for the sake of history, let's not forget the Bruno Bettleheim Refridgerator Mothers legacy that for decades blamed "cold mothers." On the heels of those theories came discrete trial training, Louvas-style. I was accused by ABA (Applied Behavior Analysis) local and online evangelists of "abandoning my child," "abusing" her, even, in my refusal to sit her at a kitchen table eight hours a day while a parade of college students at $10 an hour sashayed in and out of my house drilling her. My choice to do what I believed was right for my child was likened to refusing to give her chemotherapy had she of been diagnosed with cancer. I'm not making this up. And, when we appeared on a national television talk show about autism and Grace's art, I endured a backstage, harsh, lip curled questioning of a less than warm-fuzzy commentator "had I done ABA with my child?" (The comment necessitated a trip to my therapist once I returned home.)
And, you know what? Those Evangelists? They lost their faith. And their children are still not cured. Like mine. ABA was replaced with intravenous chelation, bone marrow transplants, blood transfusions, a myriad of off-label medications, oxygen treatments…the list goes on. And on.
My daughter is no longer a recently diagnosed preschooler. She's 17. We have survived a myriad of user-friendly interventions, most proven, some not-so. I've traveled this arduous journey a decade-and-a-half, nearly, gripping all the while to my sense of self, my truth and and an aim to always honor her Spirit. The Evangelists are parents who began their own journey with their children at the same time. And then there are whole communities of them out there. Some are still searching for "The Cure." Some of them still bitter. Some of them still asking: Why?
As the cure-promoters continued to be in my face that beautiful otherwise blissful Saturday night, I came back at them. They had ONE piece of the autism puzzle. ONE. I agreed with the validity of their one piece. But I told them that the spectrum was far too complex to generalize their theory to all. I stressed genetics. Genetics almost always came first (with exceptions for things such as birth trauma,) and then environment. I answered their questions about what I thought was the source of genetics. And I pushed back that my child was not broken. One questioned how I could say that. My child, I told them was perfect as she is. And I questioned them: What if the reason for the increase in their numbers was something spiritual? What if a child with autism is born to teach us to serve? To be tolerant? To just BE in this world?
Yes. I've heard it many times that there's yet another brass ring out there. Saturday night reignited old stuff in me. Old autism baggage. Long ago I chose to embrace our lives with all of its' extra challenge incumbent with my daughter's diff-ability. Do not tell me she's broken. Do not tell me that you've got a cure for her. You can shove that cure, cute guy. We are fine just as we are. If you want to dialogue with me, if we can put down our defenses and exercise some nonviolent communication principles maybe we can hear one another. Please respect my journey. This is my Truth. I embrace it. I cherish it. It is who we are. Perfectly imperfect. And so it is….
I absolutely agree. I stopped asking why years ago…it serves no purpose for us. My son doesn’t need a cure, he needs to be understood and accepted.
Well, Leisa, as I read your words, I obviously feel you are talking to me and others like me. Obviously. I was, from the get go, one of the moms who tried everything…even the off label weird stuff, to help undo my son’s brain damage. It is brain damage. Whether we agree what the cause of it is or not, these kids have damage to their brains. I actually do believe there is a possible genetic predisposition…then there is the environmental insult…then, bam…brain damage, otherwise known as autism. I am a medical person…medical thinker..it is how I am wired. It is my nature as a nurse and my son’s mother to try everything to help his brain function. I can say that we did, and actually still do, ABA. ABA is without a shadow of a doubt the best thing we ever did with him. It is makes sense. It works. It is not abuse. Those who claim it is have obviously not done it correctly. I also am one of those who did, and still does, always keep my eyes and ears open for any sort of medical breakthrough that could help my son’s brain function better. Why would I not do that? Just as you don’t appreciate being attacked for not doing those things, I don’t appreciate being catagorized as crazy for doing them. If you take the time to research the biomedical theories, they make sense. So, if they make sense, and treatments are being discovered to possibly reverse the damage…why on earth is it crazy to want to do that? Has every treatment worked? No. But, researchers are just starting to make progress. I hate to say it, but I fear that the most effective treatments for autism will not come in time to make a big difference for my son…my son who I love unconditionally. He is precious. Have I accepted the autism….ummm…I guess I have…he has it…he’s still my son. Do I view it, though, as some sort of blessing in disguise. Absolutely not. Am I bitter? No. But, you better believe I’ll be first in line if one day there is a cure. And that does not make me a bad mom or an unloving mom to my son.
Hi, Trina, I’ll respond point by point below to you.
Trina wrote: Well, Leisa, as I read your words, I obviously feel you are talking to me and others like me.
Leisa: I first saw your Facebook message so I’m responding to both in that “Take Your Cure & Shove” is meant to the man I met and anyone who gets in my face and demands that I must cure my child. So, saying take your cure and shove it is not directed toward you. While I tell it in the context of meeting this man, it is meant a generic comeback to anyone….I cannot recall at this time you ever getting in my face and shoving it. I recall our disagreements–agree to disagree as you wrote me–to be just that. We were restrained and respectful to each other those many years ago on the front end of our journeys in the thick of early intervention. And I respected you and still do for that. You showed tremendous restraint in that regard.
Trina: Obviously. I was, from the get go, one of the moms who tried everything…even the off label weird stuff, to help undo my son’s brain damage.
Me: Yes, you were. And I’ve always been amazed on many levels. No one can say that you are not tenacious and there is admiration for the quality of tenacity. I recall the moment Laura Lloyd first noted that about you when she introduced me to your husband for the first time.
There are many, many people out there who try many things. I went back into ancient history (hug, shadow therapies) and over the years have been in contact with people all over the country and know of others around the world who have tried all of these treatments. Yes, some of them you have also tried. Trina, it is not in the spirit and intention of my blog that I generally would single someone out like that or specifically in this case, you. That is not the intention of my blog or this post. I think this may have struck a note with you because obviously this is an issue we both hold dear. And I have stated many things that you may have tried but so have many people everywhere tried them. I am simply giving information about what has been tried in the context of saying this is one tact that I have seen many people around the world do and these are not my choices. Again, not singling out you or anyone else.
Trina: It is brain damage.
Leisa: I can accept that. I have often explained autism as a brain that is damaged in comparison to a neurotypical brain. It is clearly so in manners of speech and social interaction, etc., which is how I often use the term.
Trina: Whether we agree what the cause of it is or not, these kids have damage to their brains. I actually do believe there is a possible genetic predisposition…then there is the environmental insult…then, bam…brain damage, otherwise known as autism.
Leisa: Again, I can agree. And am very pleased that now it is pretty much scientific consensus that environmental insult (which I believe are MANY causes) are the triggers for the increased incidence.
Trina: I am a medical person…medical thinker..it is how I am wired. It is my nature as a nurse and my son’s mother to try everything to help his brain function. I can say that we did, and actually still do, ABA. ABA is without a shadow of a doubt the best thing we ever did with him. It is makes sense. It works. It is not abuse.
Leisa: I believe ABA done gently can be a great fit for some kids. In the manner that I saw it being done everywhere in 1997, I believe it would have broken my daughter’s gentle spirit. It wasn’t until 2000 at the ASA Atlanta conference that I met people who were doing it in a manner that better matched my alternative (attachment) parenting style and that they did not believe it was a cure. Trina, I did not write here that ABA is an abuse. Though some people, including individuals on the spectrum make that claim. I think that it can be done in an abusive manner–remember the thigh-slapping and yelling advocated by Louvass once upon a time that was still perpetuated after he renounced it–but that’s another story and I’m making no inferences here about how anyone personally has done ABA. I used the word abuse in the context that I was accused of abuse by people because I did not do the form of therapy–ABA–that they saw as a cure. So I was accused of abuse, as I state here. I am not saying in my above blog post that ABA is abusive. So, as you wrote to me that this brought up old issues for you, it did for me as well, and as I infer, it has time and again over the years.
The problem comes when any of us says the other is wrong for our choices. I am simply saying these are not my choices and just as I disagree with some of the cited choices–they are not my own–others have disagreed with my own or what may have seemed my lack of decisions not to make certain choices. I named these things because the context was two people literally, aggressively in my face questioning my choices. The blog post is in response to all the choices I have not made but could have, that others have made, but I did not and then how I’ve been criticized for not making some of them and also for accepting my child’s autism.
Trina: Those who claim it is have obviously not done it correctly. I also am one of those who did, and still does, always keep my eyes and ears open for any sort of medical breakthrough that could help my son’s brain function better. Why would I not do that? Just as you don’t appreciate being attacked for not doing those things, I don’t appreciate being catagorized as crazy for doing them.
Leisa: In case you inferring that I have written this, which I’m not sure you are, I do not use the word crazy above nor am I saying anyone is crazy for pursuing any treatments.
Trina: If you take the time to research the biomedical theories, they make sense.
Leisa: Trina, I have used bio-medial treatments on myself in 1987–10 years before my daughter’s diagnosis, seven years before she was born. It informed me to make choices that I believe prevented Grace from being further damaged by environmental factors interacting with her DNA and potentially increasing her degree of autism. I have also used bio-medical treaments and seen a number of doctors in various states and here for guidance in bio-medical treatments that I felt I could do within good conscience of my individual value system, budget, etc.
Trina: So, if they make sense, and treatments are being discovered to possibly reverse the damage…why on earth is it crazy to want to do that?
Leisa: I have done a search to verify, I have not used the word “crazy.”
Trina: Has every treatment worked? No. But, researchers are just starting to make progress. I hate to say it, but I fear that the most effective treatments for autism will not come in time to make a big difference for my son…my son who I love unconditionally. He is precious. Have I accepted the autism….ummm…I guess I have…he has it…he’s still my son. Do I view it, though, as some sort of blessing in disguise. Absolutely not. Am I bitter? No. But, you better believe I’ll be first in line if one day there is a cure. And that does not make me a bad mom or an unloving mom to my son.
Leisa: First, I think you are an amazing mother. You are creative; smart; very funny beautiful; incredibly energetic; always look splendid, indeed and I think you are a fabulous mother. I cannot imagine raising four boys and doing all you have done!
I acknowledge and accept the path that some parents take, as you’ve described above. It is another path–one that pursues a cure. It is not my path and I am at peace with it. I am not saying others are wrong if they choose these paths.
That said, another thing that we have respectfully agreed upon is the issue of spiritual matters. The only reason I bring it up here is to say how Buddhism has resonated with me. Buddhism teaches us to go the path of least resistance. (Not, not giving up. No, not not trying.) Buddhism teaches us how we create our own suffering and then how to end that suffering. I am certainly not proselytizing here. In fact, it’s one of many, many misconceptions that Buddhism is even a religion. I do not call myself a Buddhist, but I resonate with these principles I’ve shared. And I’m sharing them here as I see it fits my journey to aim to make peace with the struggle of autism. I ceased the struggle early in my journey and only in recent years found support in these truths for me.
Gordon Peerman, M.Div., works at Vanderbilt’s Center for Integrative Medicine as a counselor and also teaches meditation. I have attended some of his free, weekly public meditations, now held at 2nd Presbyterian Church. He has written a book: “Blessed Relief: What Christians can Learn From Buddhists About Suffering.”
…But then…to each his/her own path….
I hope this clears up that there was no personal aim, by any means, in this post. It was about my “struggle,” my journey.
Namaste.
AutismWonderland: thank you for returning. I love the sweet picture on your blog. I co-lead a bi-monthly autism orientation and I talk about asking “Why not” instead of “Why.” Statistically, by the time we turn 65, about 75% of us will experience some form of disAbility: cancer, alzheimer’s, diabetes, traumatic brain injury — at least as close as a cousin. If it’s not that, it’s death of a loved one, divorce, job loss. This is the theme of my life. I’ve been a poster child of sorts. But, one who thrives….It is not what happens to you as much as how you choose to deal with it. Can you choose to see the “grace” in it? Life is so much more bearable when we do, I believe. Thanks again. AW!
Thanks for the information..It had clarified many of the doubts i had so far..Thank you..Hoping more blogs from you..
I’d think her case disintegrates cedsinoring that the college (i would think) doesn’t guarantee job placement, only providing assistance.Now whether or not they provided enough assistance may be up for debate, but you can’t sue for the cost of your entire education because enough employers didn’t call you when they saw your shit resume.She’s alleging that the school didn’t make sure employers called people who sent in applications. The school has no say in what HR departments do. I seriously hope this thing gets thrown out, but only after the judge makes her pay back the city judicial system for wasting their time.
Data released by RealtyTrac Thursday shows that ciites in the typical foreclosure hot spots of California, Florida, Nevada, and Arizona once again accounted for the nation’s 20 highest foreclosure rates in Q1. But it’s their long track record of debilitating foreclosure numbers that have locked them into those rankings. RealtyTrac says many of the hardest-hit ciites are actually posting significant declines from a year ago. Instead, foreclosure activity now is running rampant in ciites outside the Sun Belt.