Earthbender Wisdom

The past several years have been an interesting journey. Mini-me has gone from a non-verbal, head-banging, screaming, frustrated toddler to a child that presently is mainstreamed in first grade with an aide and assistive technology to support him, and the capability to converse at length on all things Thomas the Train, Transformers or, lately, the movie "The Last Airbender". Recently, I was treated to a wonderful glimpse of my son's perspective as we sleepily conversed early one morning before the rest of the household was awake.

Mini-me: "I'm a six year old boy, I have three sisters, and I am autistic."
Me: "Yes, you are, but what does being autistic mean?"
Mini-me: (after a thoughtful pause) "It means I have to learn to be a good Earthbender."

Reflecting on his comment later, I realized just how accurate he was. In the cartoon series The Last Avatar, certain people are born with the gift of manipulating one of the four elements - water, fire, air, or earth. They are able to manipulate their gifted element in a manner to build or to protect those around them - to be an asset to their community that acts for the greater good. At the same time, for those who cannot accept the responsibility that comes with the gifts, they learn to injure and maim and to destroy until, ultimately, they themselves are destroyed. Learning to master the art of element-bending is a long, arduous process, not without some pain, learning to cope with the separateness the gift brings and a great deal of frustration and repeated practice until, finally, acceptance of all their gift brings, the responsibility they bear and who they have become in the process.

The journey my son takes parallels those few so gifted. He must learn to deal with the world around him step-by-step, something most of us take for granted and do simply by osmosis, and in doing so develops a unique view that brings those around him a new perspective. By careful observation, frustration, and continual practice, Mini-me learns step-by-step to manipulate what he is taught into something that he can use to function within the world in which he lives. In the process, he himself must learn to bend, to accept, to join, and to find his place among the people of his community even while remaining somewhat separated, using the gifts he has been given - his intelligence, his sense of humor, his imagination, his perspective of the world around him, and an incredible continual curiousity for details often overlooked by others to become the extraordinary adult I know he will be.

In the process, he will take risks I can not protect him from, and more than I would ever have wanted him to experience. But then again, even now he already seems to be aware of that himself and takes those risks in stride. Watching my young son fearlessly climbing trees recently, I grew anxious at the "bridges" of old boards he had created across the various limbs of the trees. As he stepped out on one, it tilted up and fell out of the tree, just as he grabbed for the tree limb.

Me: "Wouldn't you like something a bit more stable up there? We can get some nails to hold them in place, Mr. B."
Mini-me: "Yeah, I know...but that's okay. Wibbly-wobbly is much more fun."

You're right on both counts, Mini-me... With that strength of spirit, you will indeed be a wonderful Earthbender...and yes, wibbly-wobbly is much more fun.

The Art of the "Now"

Destiny is no matter of chance. It is a matter of choice. It is not a thing to be waited for, it is a thing to be achieved.
William Jennings Bryan

Zen – the school of thought that enlightenment can be attained through meditation, self-contemplation, and intuition (to paraphrase Webster’s). In other words, being completely and wholly focused on, and in, the “now.” Not distracted by the “but tomorrow I need to’s,” or the “in five minutes I’m going to,” but completely focused, body and soul, on “right now.”

A friend of mine and I travel similar journeys of raising sons differently-abled through autism, often comparing notes, using each other’s shoulders to cry on and bouncing ideas both practical and impractical off of each other. One of the differences between us is that I do so as a single parent, and have four children, instead of just the one child. However, I was struck by just how perfectly the zen-inspired phrase "the art of the now" fits what all parents are ultimately required to do, no matter what type of child we are raising, or what type of family configuration we are doing it within.

Dealing with a normal (or neuro-typical) child, it is easy when we are preoccupied to slough off a demand with one of the stock parental phrases: “In a minute,” “wait a while,” or even “not now, I’m busy.” But those phrases are incomprehensible to my son. Mr. B’s reality exists solely in the “now”...anything other than an immediate response to his request is intolerable. As I school myself to consistently respond to my son “in the now” – to stop what I am doing, and totally focus all of my attention on what he is trying to tell to me – our relationship and understanding of the unspoken communication between us has become extraordinary and we no longer speak gibberish to the other. Originally completely non-verbal, Mr. B’s deepest emotional communication still remain nonverbal – sniffing touches on my hands and arms, “baby-bear” kisses and growls on my neck when he’s the most happy, or simply holding my face in his hands as we gaze into each other’s eyes. And though I am grateful he now uses more and more words to express his needs and wants as we struggle together to bridge the chasm between his world and ours, it is in those moments uncluttered by the inadequacy of words that we understand each other’s heart and soul the most.

Over the past year, as his therapists, sisters and I continually labor to create that bridge between Mr. B’s reality and the world in which he must ultimately live, an interesting side effect has occurred. In working to create that singular focus in my relationship with my son, I see a similar deepening in my relationships with each of my daughters. As a homeschooling parent, the one-on-one attention my children get has always been a priority, but I find myself now dissatisfied with what I previously considered acceptable, and striving to provide that focused attention in more ways than before. And a deeper bond among all of us is emerging because of it.

As we get older, we hurry more, multi-task more, accumulate more, and focus less. Admittedly, it is easy for every day demands to overwhelm our lives. There are career ladders to climb, bills to pay, hobbies to explore, and much more to divert our attention. But shouldn’t we as parents be more focused on our children – trying to achieve that zenlike focus on our children’s “now” - regardless of whether they are “normal” or “differently-abled”? Unspoken communication of the senses, the soul…the self…with another gets lost amid the cacophony of cluttered lives…IPod earbuds or headphones on, CD’s playing while simultaneously watching a DVD on the TV and surfing the Net, and racing from one activity to another without pausing to savor the experience. Our children learn to multi-task, accumulate, use up and discard almost everything - items and people – in their lives without every truly experiencing any of it, and all at an alarming rate.

That is not, ultimately, what I want for my children to learn.

Such, to me, is the art of autism…the ability to develop that soul-searching singular focus and slow “knowing” of one’s self and another…perhaps to ultimately hear and truly understand the silence.

A Puzzling Juxtaposition

The true test of a first-rate mind is the ability to hold two contradictory
ideas at the same time.
F. Scott Fitzgerald

Okay. I’ll admit it. I’ve only just started the journey of dealing with this thing called Autism, and already I’ve had enough to last me a lifetime.

Enough of people wanting to cure my son. Enough of people expecting me to want cure my son. Enough of people taking it personally when they discover that, no, contrary to their personal quest, I do not find anything wrong with the way my son is wired, but I do find something wrong with the attitude of society which does not place any value in what adult autistics have to say, in spite of the lucidity and logic of their arguments. “But they’re autistic…they don’t understand they’re suffering.” Now, that’s a logical argument!

Enough of people giving me parenting advice or acting as if my son is contagious when he melts down in the middle of a public place because of sensory overload and proceeds to let me know at a physical force level and volume to rival Hurricane Katrina that we need to find a quiet space where he can decompress…NOW! “One good spanking would fix that brat.” “All he needs is sleep.” “How can you let him behave like that in public?” Or, because he’s kept on a child’s harness for his own protection since he runs everywhere… “how can you be that cruel?”

Enough of financial and social supports that are federally mandated to be in place, and then are pablum-ized and stretched so thin as to literally be non-existent. And please, before you say it…don’t assume that the school programs offered are any better simply because they are provided by the school districts. They are not. In fact, I’m still trying to figure out why no one else sees it as a blatant conflict of interest that the gatekeepers to the programs that have been federally mandated by the IDEA are the same ones that hold the fiscal responsibility for providing those programs.

And - to be brutally honest with myself – enough of Mini-me’s meltdowns occurring when the one person he trusts in the world to truly understand him on all levels and respond – me, his mother – sometimes just doesn’t “get” it.

But, I digress.

When I first began this journey called parenting, I was gifted with a singular piece of advice that still resonates with me today. An old country doctor told me “read everything you can get your hands on about child development and parenting, then put it all away and trust your instincts. You’ve got a broader base of ideas than you had, and you know your child best.” It’s still the best piece of advice I was ever given (sorry, Mom). So…I read. I absorb. I question. Anything and everything I can get my hands on - medical and psychological research, books, therapy manuals, diet and nutrition reports, supplement evaluations, legal documents, magazine articles by frustrated parents, physicians, or even more frustrated adult autistics (or autists – whichever you prefer) …anything that will give me an insight into what is best to do for my son. I read literature from the “curbie” view, documentation from both the “genetic” and “environmental” views, arguments and diatribes from the “leave us alone” adult autistic view, and even hate articles from the completely clueless “eugenics-are-us” group. (Now, that’s a group who’s ignorance is truly showing!).

Wading through this massive conglomeration of ink, paper and high technology, I have come to one single, crystal-clear thought.

No one has a clue…It’s that simple. And that complex.

Being who I am, I have often found the standards of behavior and order of thought imposed by the social definition of “normal” to be confining and unimaginative. My son’s neuro-diversity is as much a part of who he is and will become as his red hair and brown eyes. I cannot cure that, nor do I wish to. However, because I am not a “cure-bie,” I am expected by those opposed to the curebie camp not to support research into how the wiring in the brain works and what makes the autistic mind specialize as it does. But I do support it. I don’t support it for a cure. I especially don’t support it for the purpose of eugenics. I support it because it will give me a better understanding of what I can do for my son as a parent and how I can help him become independently able to do for himself.

I do not believe that mercury causes autism, so the assumption by the “mercury group” is that I vaccinate my children without question. Yet, I questioned the efficacy of vaccines since before my eldest daughter was born and ultimately made the decision not to vaccinate my children. Am I anti-vaccine? No, but I am pro-total disclosure and self-decision, rather than simply buying into the party line, and for me the risks outweighed the benefits. And, while I do not believe that mercury causes autism (yes, I put emphasis on the word “cause”), I suspect that over the decades the various neurotoxins contained in the products that we consume nutritionally, breathe in, and take into our bodies through simple absorption through the skin from numerous sources – including vaccinations – played a large part in triggering genetic switches ultimately causing certain alterations and responses, and establishing various behaviors and neuro-wiring that manifest themselves as the symptoms now used to define autism. Translation – although we may have better diagnostic procedures, I personally think this is an issue of evolution… of our species attempting in some way to adapt to the continual bombardment of toxins to which we have subjected our bodies, both internally and externally, over the past several generations.

What I do know is that the issue on all sides is not black and white. As a parent, I can support research into the “whys” if it means that I begin to understand how behaviors are triggered and that helps my son. As an advocate for autistic children and my uniquely individual children in particular, I work for increased recognition and respect of those considered differently-abled (whether physically or neurologically) and outside the norm by society as a whole, while at the same time helping my son learn to cope in an overwhelmingly “normal” world which will steamroll over him if he doesn’t.

No, my son is not a puzzle piece and yes, he has plenty to say although he does not speak. I also understand the need for some kind of picture representation that can universally describe the way any loving parent feels when faced with something – and someone – they don’t have a frame of reference for understanding. It’s puzzling…simple as that. And in the same way that pieces of a puzzle come together to make a whole while still showing their individual edges, it’s not one side of the issue or the other that will be the answer here. It will take all the pieces for the puzzle to come together.

Perhaps, just perhaps, the beginning piece lies in the understanding that we are all on the spectrum...of humanity.

Blessings to You in the New Year.

May you be blessed with good friends.
May you learn to be a good friend to yourself.
May you be able to journey to that place in your soul where there is great love, warmth, feeling, and forgiveness.
May this change you.
May it transfigure that which is negative, distant, or cold in you.
May you be brought in to the real passion, kinship, and affinity of belonging.
May you treasure your friends.
May you be good to them and may you be there for them;
may they bring you all the blessings, challenges, truth, and light that you need for your journey.
May you never be isolated.
May you always be in the gentle nest of belonging with your anam cara.

In The Fullness of Time

"The Celtic mind was never drawn to the single line; it avoided ways of seeming and being that seek satisfaction in certainty. The Celtic mind had a wonderful respect for the mystery of the circle and the spiral. The circle is one of the oldest and most powerful symbols. The world is a circle; the sun and moon are too. Even time itself has a circular nature; the day and the year build to a circle. At its most intimate level so does the life of each individual." John O'Donohue

Creeping closer to the end of the year, this particular passage strikes a chord for me. Being Celtic, choices I have made in my life have led me far from the straight and narrow. Time passing this peculiar year has not, by any stretch of the imagination, traveled in any kind of a straight line. Rather, it has dramatically twisted and curved so that I no longer recognize the forward motion of my life. I find myself instead simply seeking direction, similar to being underwater and trying to find which way the bubbles are traveling in order to be able to breathe once again.

I am the proud, and often amazed, mother of four unique individuals, three of them daughters I am in awe of as I watch the strong, talented, extraordinary women they are becoming. My fourth child, born six years behind his next sibling and often called "God's punchline," is my only son, and ironically, my only redhead. He gives new life to the phrase "be careful what you ask for - you just might get it!" He is everything I asked for...and nothing I expected.

For an instant, in the middle of this year, time did not move in any direction - forward, backward, or circular. It stood absolutely still. And when it started again, the direction that my life had been going was irrevocably changed. In that instant, everything I had observed about my son, had agonized over in my heart, and had finally gathered my courage to find out was melded together with crystal clarity. By definition of the medical and educational community, my son was autistic.

I deal with "disabilities" in my other children. Two of my daughters have learning disabilities in the form of severe dyslexia and ADHD. Through hours of personal research, I know these conditions are not simply impairments in learning traditionally, but entire re-wiring of the brains so that their very manner of thinking and relating to the world around them differs from the typical. Not using their "disabilities" as an excuse is something that I work hard to instill within my children...that they are different than "the average bear" may be true, but it makes them no less intelligent, no less capable, and no less a valuable and valued person than anyone else. With my son's diagnosis, however, everything I've come to believe and have taught my children is put to the test.

My son is everything I could have asked for and more... yet, in the space of a few short months since defining his differentness, for most of society he is much, much less. They do not see his courage, his acrobatic grace, his resiliency, his compassion, or his intelligence. They are blinded to those things by behaviors and sounds they don't understand and don't wish to tolerate. Only by becoming "normal" or learning to at least pass for "normal" can he be accepted and valued. And my heart breaks at the thought that to do that for him could, in fact, damage the very spirit, courage, and heart I wish to preserve.

If each of us were to look deep within our own soul to that intimate level of which O'Donohue speaks, all of us would recognize we are disabled in one way or another. For some, our disabilities are scars within that we struggle to overcome, unseen by those around us. Years ago, because of my own internal scars, I believed I couldn't be a single mother of two children and made decisions based on fear. In the circle of time, I was forced to face those fears and move beyond the scars. Now I am the single mother of four children, one of whom fights not only to understand the world around him, but to be understood within it.

In the fullness of time, I am certain that he will do both. Whether society will do the same or not remains to be seen.