Leisa A. Hammett

Joy&Pain (5-Part Mini-Grieving Series)

The call came. About six days early. Our publisher left the message on my cell phone at noon: "They're here." They're HERE! Our labor of love had come home from NICU--the printer. After nine months of active gestation, in September our team sent our babe to the printer. And now our baby was coming home from the hospital.

It was four hours before I could complete my meetings and commitments in another part of town and arrive at our publisher's office. As I made the drive across town what I did feel was not Joy. I was confused at my "lack" and began to examine my feelings. What I did feel was Pain. My daughter's psychiatrist again had seen the abnormal activity during her neurofeedback session that afternoon. He urged me to call our neurologist and schedule an EEG. This after learning that our health insurance might end early spring after an audit. If we get the boot in March, then we are responsible for paying for all expenses incurred in January and February. (And people DON'T want Healthcare Reform?!) When I called the neurologist's office the soonest appointment I could get was late December and I must see him before an EEG is ordered. And those things aren't scheduled quickly. Sigh. Worry. Fret. Wring hands. That was what I was doing as I made the trek across town. Only, instead of wringing my hands, they clenched the steering wheel.

Once I examined and diagnosed the feelings, giving them names, I traveled a couple more miles. I had put the top down. It was a gorgeous 70 degrees back dropped by lushness of yellow and orange maples. I switched off NPR. I just could not deal with injustices in Iraq right now. I decided to wrap my feelings. I envisioned centering them in a square of thick, silk Japanese cloth, wrapping them up, one side at a time, overlapping the corners over the bundle. Then I envisioned putting that bundle of wrinkled-brow worry on a shelf. This allowed me to tap into the excitement that my first book was hot off the press.

Ironically, I thought later, I had written a book about 18 families living with autism and all the while, I, too, was living with autism. I'd been in this place before.  Knowing that Grace has seizures is not new. We've just been able to not have to treat them until last year and then with a very mild drug. But things appear to have changed. And I thought about my philosophy and what I know is true: It. Will. Be. Okay.  Five years ago, fresh from my divorce, I learned that Grace was experiencing benign myoclonic seizures. I told a friend who had raised a son with autism and had endured way more than I will ever experience on many fronts. She told me this simple truth: "Oh, well. You'll deal." To some that might sound like an unsympathetic response. But D. and I laughed. We both knew she was right. I will deal. And I did. And I will continue.

So. Back to Joy. Our book is beautiful. After months of arduous labor, our photographer-designer-author/project originator & coordinator (that's me) and our publisher had pulled it off. I took it with me to the salon where I purchased hair goo. To the office supply store where I bought felt tip pens to sign it, meanwhile showing it to the tech help who'd rescue my laptop that had survived a summer of writing only to crash two weeks after we sent the book to bed. I enjoyed the oohs and the ahhs, the stunned and admiring looks as I shared it with the staff I knew at both locations....Okay. Yeah. I can do this. I can do Joy. I can. And, isn't that Life after all? A mixture of Pain...but redeemed...by Joy. And that part about the health insurance...it may not happen. It is a possibility, but my thoughts had leaped, soared and astroplaned to a place in the future. A place. That. Does. Not. Exist. And may never. So, I'm going back to the present. And feeling...Joy.

Our book is out. WOOT!

Join us at our Book Launch--a photography exhibit and book signing--Sunday, November 15, 3-5 p.m., L. Greer Gallery, Edgehill Village. More events to follow!

In the Community of Motherhood

Photo: Rory Hamilton

The act of becoming a mother means that some invisible hand of life-emotions reaches down into the very pit of your heart and takes a wrench hold.

You will never be the same.

You have joined the universal community of motherhood and. there. is. no. going. back.

If one is alive, human and fully emotionally formed, there is a deep level of compassion that is permanently implanted in you that elicits tears of compassion at the thought of a child being hurt, another mother losing her babe, another's joyous occasion of giving birth to life just as you have, etc.

You're stuck.

You will be this way forever.

It is a good thing.

I believe this is why women are less prone to violence than men. We have literally given Life. And, it is our innate beings to preserve Life and to care for and nurture it. I love being a woman and a mother.

It is a true gift to be one and to have inside of me this well-spring of emotions shared by mothers around the world. Early into my own motherhood journey, I recall being in awe upon arriving at this shared destination. I can also remember first feeling this fullness of compassion and magical connection to all mothers everywhere. I knew that I had arrived and tapped into something deep, bonding and sacred and that is was a blessed gift not to hold lightly but to honor and to cherish.

Here's to the beauty, the fullness, the decadent brimming heart richness, the lush yummy-ness of Motherhood. And to All Mothers Everywhere....

From There to Here

*Fall break, 2009, The Beach with her father.

The Mother's Day Out director predicted that when I left my two-year-old on the first day I'd run to my car with tears streaming. Ummm, more like I ran out into the parking lot, jumped in the air and clicked my heels. Okay. Well, that sentiment was certainly there. I've always reveled in Mommy Independence but I did have a moment of tears welling as I peeked through the open window and saw and heard my tiny toddler happily playing in the miniature kitchen. But, soon thereafter, all hell broke loose. By noon on my first day of twice-a-week six-hour-block Independence, I got a call from the director. Finally. Someone acknowledged that things were not right.

Lodged deep within my intuitive spirit, I knew something was different about Grace at six weeks. She was just too independent and happily self-entertained for an infant. At eight months, I questioned if she might have autism. But, this was 1995. All I and most people knew about autism was head banging, rocking in corners, and Rainman. That wasn't Grace. But the behaviors of isolation, repetition, oddity in movement, sensory seeking began to emerge. By 18 months the social disconnect was so strong I knew for certain something was wrong. But typical of the times, no one listened to parents like myself. Another year passed until the Mother's Day Out director phoned me at noon of that first day. My six hours of Independence ended abruptly. She asked me to come to her office then. Grace was not going to make it an entire day, she said. By the time I had gotten in my car and driven from the parking lot earlier that morning, Grace had turned around and noticed I was gone. A separation anxiety tantrum like none other ensued and persisted. And continued. Followed by characteristics of autistic oddity that the director could not name but knew were off. That day I was referred to Tennessee's Early Intervention Services and began to receive play therapy and then waited. For six l-o-n-g months as the clock for precious early intervention tick tocked. And then, at age 32 months, Vanderbilt Center for Child Development gave us the diagnosis of autism.

Flash forward two years post half-day preschool pasted to a hodge-podge, mish-mashed number of afternoon interventions, and we began Kindergarten. As I drove from the elementary school the first morning a panic overcame me. What was I doing? I'd entrusted my child's safety in the care of strangers. What if a gunman came off the nearby interstate and into the playground? Luckily, I dismissed the thought, not being one much prone to Fear.

We left the nurturing environs two Kindergarten years (one repeat) plus four grades later. And then the hurdle of Middle School came and went. We made that transition with such well executed finesse that High School transition did not illicit any nail biting. There are inconvenient details and typical systemic hassles, but I'm now setting my sights on the horizon of adulthood employment and Grace's own Independence.

But today, I drove the cool car, top down, parked, met her assistant. Grace walked far ahead of us by herself toward her the high school we'd visited weekly all late winter and spring. Parents were forbidden on for this special Freshman Orientation. So, I turned, went back down the steps and swallowed a lump of visceral emotion that was gurgling up from from my core.

On the phone last night, thinking of the week ahead, when school would actually begin, I sighed to The Fiance: "I Hope...They are kind. To her."

And then, as I cradled the phone between my shoulder and ear, I continued folding the perpetual Mount Everest of laundry that resides in my great room corner chair. And I chose to believe that they would.

Searching for unpublished posts, I unearthed this, written about two months back. And now I can say: they have been kind. Far exceeding anything I could have dreamed. And. I am Grateful. Very much so.

*Though grateful for the photo, too, I would not chop off my child's feet....;-)

A Mantra to Live By

*Dena & I Margariter-ing it up Mexican-style at a mothers of kids with disAbilities gathering she organized on a recent Friday night.

First, anyone who's not too airy-fairy or someone read about in a book and who is Real Life and has a "Mantra" catches my attention.  It's a strong word. I have many mantras I live by at any given time.  But, the following caught my eye and grabbed my attention by the collar with both fists on either side and would not let go.

I have watched my friend Dena Gassner blossom into her own. Ever so strongly so. At a recent ASMT conference I picked up a brochure for her new organization, Center For Understanding, and read the following regarding Dena:

"Her personal mantra is leaving shame and inadequacy behind for an empowered life embracing autistic authenticity." 

Dena has high functioning autism and was not diagnosed until she was an adult.  She is also the mother of a son who also has high functioning autism. Both are featured in my book collaboration with photographer Rebekah Pope, From Heartache to Hope: Middle Tennesseans Living with Autism, due out in November.  I am watching other adults on the autism spectrum in our community grasp, embrace and celebrate their differences. I'm in awe, joyful and inspired.

And that mantra--it's a good one to be adapted for any of us in Life!

*I need probably some Aspie (or other) techno help. I wanted to embed this AuTube video of Dena but have not mastered the skills of embedding videos into my blog yet....Errggh! I opted for the photo above.

Label Schmable

"Hands." Grace & Leisa, Photo: Rory Hamilton

Labels. It's something us special needs parents obsess over. Labels, can be viewed several ways. If there is an issue going on, many parents feel relief to have a name, to have a pathway to search for help and information, and to get help. Labels, unfortunate as some may view them, are needed  for obtaining help within the public school system.

We can choose how we allow labels to affect us. We can view them as slapped on, hung onto us by society, etc. Or, we can go about living our lives and know that labels do not define us, as Jerry Newport aptly named his book about having Asperger’s/Autism: Your Life is Not a Label. Or, the Down Syndrome Association of Middle Tennessee’s slogan: “Down syndrome unites us, it doesn’t define us.”

It’s an important lesson I learned in my early 30s that carried me into the disAbility journey, which began near the end of that life decade. As individuals, we are each responsible for our own feelings. We choose how we are going to feel about things and other people and even their actions toward us. And, if we think that they think something about us and it bothers us...there’s likely something within us that believes it or believes something about us is inferior, etc. That’s my Truth and it’s radical to some, but not unique by any means.

Labels. You decide what they are going to mean and how much power You will assign them. I say: Label? Schmable! It doesn't define us!

A Book of Renovated Love

Image: Penguin

Vacation dawned. The self-help books were left on the bedside table back home. Not exactly a novel, my usual holiday read, instead into my overstuffed backpack, I shoved in the hardback, Building a Home With My Husband, A Journey Through the Renovation of Love by Rachel Simon. Obviously, I loved it enough to bother writing about it here and to suggest you consider giving this little jewel a read.

There was a tiny bit of curious affinity to this book and it's author before I cracked its spine. Simon is the author of Riding the Bus with My Sister, made into a Hallmark Hall of Fame movie, about her experiences with her sister who has intellectual disAbilities. 

I heard Simon speak at the 2007 annual Tennessee Council on Developmental Disabilities' February Partners in Policymaking Leadership Institute. Introducing her was an autism mother friend, whom I greatly respect, and who attended Bryn Mawr with Simon a couple decades earlier.

From her stories of knowing no strangers, Simon apparently endears herself to many and likewise to those who read this book where she upon reveals her life's journey to present. Simon carefully slices and dissects her soul and leaves it, for much of the book's duration, naked and bare, raw and shivering with honesty. Tenderly, she packs it's healing spirit with numerous aha's--both her own and surprisingly for me as a hungry reader. She does this so frequently in her life, that her humorous, and also reader-endeared husband nicknamed her "Girl fromEphinema."(Snicker. Yep, that one made me spit my herbal tea...hot cocoa...wine. Whatever.)

Simon details the hideous woes, heartaches and headaches that drive any home owner brave enough to take on renovation. But the sweet twist is that in scrutinizing the dark andmulti-problematic crannies of her ancient house, she does her own internal renovation.

This is a book that got my neon-yellow-highlighter- plus multiple-folded-page-corner treatment. And, again, it's not a self-help book! The writing is smooth and delicious dished out in revelatory nuggets on navigating the maze of family life. In packing boxes and remodeling a home she tales (sic) of simultaneously unpacking and remodeling her life and the wounded nooks of her heart. In remodeling Simon examines love and marriage. She tackles the complicated and sticky relationships of siblings, including the intricate dynamics of one who has special needs; of aging, health-declining parents; plus those with her writing students and her community.

Building a Home with My Husband is Rich. Funny. Insightful. Lush with tender tidbits, too many to begin to quote here. But, I'll offer one that validated a thought I've had for years: "Due to many details that vary right at each sibling's birth," writes Simon, "from order of arrival to time in a parent's emotional life to the family's fortunes, none of us is raised under the same roof."

And, I'll close with this gem. A nugget of wisdom that came in Simon's soul search through renovation of home, love and life: "So this is commitment [... which] requires that the other person must love and respect me enough to want to hear, and I must love and respect him enough to speak words he can hear. But assuming that is the case, then this is commitment: valuing our unity over my pride, the whole of our us rather than the sum of my righteousness."

Amen. Thank you, Rachel Simon, for the beautiful, enriching read that surprised me and graced my week's stay in a North Carolina mountain cabin this summer. You were a perfect vacation companion.

Filling The Well & Securing The Foundation

Photo: Irish Karate Intervarsities <IrishK06>

The year was 1992. I spent much of it flat on my back. I launched my corporate communications business in Atlanta just months before and the previous year's end. I was diagnosed by mid-year with chronic fatigue. But luckily I had progressive doctors and with alternative treatments and an early diagnosis I was well in about 12 months. It was then that I developed a mission statement that in order to take care of my world, I first had to take care of me -- psychologically, nutritionally, spiritually, physically, emotionally, relationally, educationally, etc. I morphed this mission statement when my daughter was born 15 years ago into, first, I have to take care of me to take care of my family and my world. Thanks to her father, from whom I am now divorced, for encouraging me to make this my mantra.

Now I lead bi-monthly workshops to parents of children with autism, like mine. I stress that despite our challenges, we must fill our wells first. We are our family's foundation and it must be solid. For me, that means a lot of things that relate to daily practices of journaling, yoga, meditation and physical exercise -- usually outdoors. Plus, whole food nutrition. And then supportive relationships and a sense of connection with the Divine. That's what keeps me whole. And I wholly believe in the power of happiness and how we help create it within our thoughts and in the ways in which we choose to support ourselves. Or not.

Merging into Mainstream

Raw. That's the operative word of the moment to describe my general emotional state. It's approaching seven on a Sunday evening. It was one of those days with which the weather gods decide to bless us minions every now and then. A day where the heart and soul soar into a blue and puff-cloud expanse, the sun smiling down just enough. The air had a sudden quiet and there was that crisp and a slight crunch beginning to appear as the sun's heat begins to back off, leaving tale-tale signs of summer's leaving and a fall coming. Yet, instead of frolicking in it all, I spent two hours of that precious gift in a dark theater in front of movie screen.

Photo: Fox Searchlight Pictures

Really. I don't write here about every movie I see. But, as a parent of a child on the autism spectrum, I must write about "Adam." I did get in a walk in the glorious weather late morning before I went to see the just-out love story of a young man living with Asperger's.

I won't give away the plot. No worries. But, I'd recommend catching it soon because Hollywood's priorities are the biggest bang for our bucks and that means it won't be around two weekends from now, I predict, when would be the next chance I have to see it. It's a must for anyone with a family member who has any form of autism.  It's a "should" for educators and others working with our population. And for the rest of the lot, thank you for going.  Hollywood has gifted us with a prime-time platform of awareness and exposure that could and will go a long way.

I can't say the movie was stellar. There were moments that seemed a bit slow. Moments that were a bit awkward, and not because the lead character's disAbility. In fairness, I cannot be a judge for this movie because I am so immersed within the autism community.

After it was over, The Fiance poked me and said, "you cried at least six times."  He told me later he cried at least four. I left the theater with mixed emotions. Why had I cried so frequently and so early into the movie? I could not say I LOVED this movie. But, it touched me deeply.  In the parking lot, the biggest gush of tears came when I was able to sum to The Fiance that my tears came from a place of knowing. Knowing the journey's pot holes and rough patches. I didn't pity the character. I just knew all too well the experience of his life. And, it's hard. Really hard. I cried tears for our journey.

Kudos to Hollywood. There was nothing glamorized, exaggerated or inaccurate within the story's portrayal. Anything in this movie can and could and does happen. And that should give some families, unaware of the possibilities, hope.  Plus a few tips.

I was curious about who were the other people peppering the seats around us. The Fiance and I weren't the only theater occupants laughing knowingly at scenes. We understood perfectly. We'd been there, lived that. I asked a mother and her adult daughter, as we exited, if they had a family member with autism, and they said they did not. They came because of the actor line up. They liked the movie and, like myself, thought is was fair and not a romanticized depiction.

Within the last two months, I've begun to think of Asperger's -- a high functioning form of autism predominantly marked by a lack of social ability -- as becoming mainstream. Two days apart I heard Asperger's referred to in NPR clips without missing a beat. First, author and literary reviewer Alan Cheuse  described a character in a novel he praised as "a little bit Asperger-ish."  Wow! And then two days later there was a reference about a criminal case involving a man with Asperger's. And, thanks to Hollywood's portrayal of the disorder in "Adam," our community will continue to merge more and more into the mainstream of our society's vernacular and consciousness. I have to believe that. I know it. And this merger deal -- it's a very good thing.

Pssst! If you have a loved one who is in denial about having Asperger's -- usually an adult and often the father of a child on the autism spectrum -- it could be a friendly wake up call to see characteristics they may share with the film's lead actor.

Transformative Life Experiences

Photo: Jerry Atnip

Nine-thirty. Below an ink black sky punctured with jewels of light. Ragtop down. Country backroads curve alongside vanishing pastureland connecting another burb with my own. Wearing a brand new pair of Lucky jeans just that afternoon discovered on sale, half price. Blonde curls swirling in a yummy-balmy mid-August temp of 75. Accelerating. In real time with foot to pedal and also chronological toward 50 and yet backwards in my mind's recounting of time. To John Mayer's cranked up yet mellow-voiced tunes, my daughter with autism literally rocks in her seat beside me grounding me to current time and place. But my mind is wandering, wandering years back, navigating the maze of my life from age 25, a quarter of a century ago, to now.

My trip through time and on home was after a photography exhibit featuring Nashville's Tent City, a homeless community beneath interstate bridges. The show had leapfrogged my memory back two decades. I asked the show's photographer, Jerry Atnip, if he intended to create a book of his work. He might, he replied. And I asked him to keep me in mind if he needed a writer. What Jerry, whom I came to know in the three years I worked as an arts reporter for a local magazine and newspaper, did not know was that writing about homelessness is not new to me.

Twenty-five years ago, a lost job here led me to employment in Atlanta from where I traveled North America covering homeless people, rural Appalachia, the poorest Indian reservation in the country and a host of marginalized humanity to which my white-bread upbringing had never exposed me. The immersion of experience transformed me, my politics, my faith. And little did I know that nearly 10 years later I would give birth to a child who would later be diagnosed with autism. Her life would eventually launch me, Real Time, into a world that, once-upon-a-time, I only covered with a pen, pad and a computer.

And so, I am Grateful. I am grateful for the roads that have wound me through land once unexplored and delivered me to where I am now. I am Grateful that I have a car to drive home. That I have a home to drive it to. The night of the exhibit, I had planned to donate a portion of my month's charity-tithe budget to the exhibit's sponsoring church's benevolence fund for Tent City. And so I did. Then I gave a dollar for the homeless newspaper that was given to me. Next, I learned that the woman with whom I talked after the show was one of the homeless residents of Tent City. Standing beside an aide worker, with whom I had also been talking, she told me that she was hoping to have a home soon. That she had been approved and she just had to keep selling newspapers as an official vendor for this publication about homelessness to earn that remaining amount. I asked her how much she needed to make her goal. It was a mere $600. So, I reached in my wallet and shelled out another $20. Between the three donations, I had given half of my week's spending allowance that night.  But, I had looked into my little tattered Dave Ramsey envelope marked "extra" earlier that afternoon. And while I didn't think about it at the time I handed the woman that $20. I only remembered the "extra" when I reflected in a moment of slight panic and questioning. Yes, I had a safety net. My donation was meant to be. Of course, I had a safety net.

I didn't think it through before I gave. But it felt good. Even if it sort stung me for a moment. And that is the revolutionary effect of Giving. I Give, someone Receives and then I Get. And there's a component of Gratitude in the revolution. I am Grateful for what I have. I Give. And giving gives back. And I am grateful that I can give.

I am Grateful for my transformative life experiences two-and-a-half decades back that brought me to a place where I am not afraid of diversity. A place that challenged the classism of my upbringing. And a place where I was transformed to know the truth. By helping her, I am helping me. And the journey of transformation did not end at 25. Only recently did I really Get that She and I are One in the same. What I now realize in Real Time, approaching 50, is that: We. Are. All. One. And for that Truth, I am Grateful.

Postscript: I came home from the exhibit and wrote this and two other posts on the exhibit, one from last week and one coming next week. It was the end of the first day of my weekly cash budget cycle. That Friday, my daughter started high school. The fees requests began to pour in and it smarted. Each time I felt the sting of that $41 dollars given, I reminded myself again that I had a safety net.  And writing here about this again, I'm reminded of the Christmas dinner I helped serve at the Nashville Rescue Mission several years ago. My current boyfriend, at the time, and I, plus a handful of volunteers were given the task to opening large cans of vegetables. Only, all of our can openers were shot. That's all we had. Two electric and a half-dozen hand-crank kind all dull and not worth a crap. It was hard work opening those cans with shoddy tools. And then I realized what a metaphor for the lives of the people we were serving that day. I winced at my small budget deficit last week, still knowing that it was nothing compared to the lives of that woman or the people of Nashville's Tent City or Tent Cities and other homeless people everywhere.

The female Tent City resident captured by Jerry Atnip, above, is not the woman with whom I spoke.

McCarthyism is Alive and Well

It's 2009 and Senator Joe is Dead. But the heart of McCarthyism still writhes and gushes. Loudly. And messily. The Joe McCarthy Hollywood fretted over has replaced him with Jenny. Jenny McCarthy. Playboy model-turned actress-turned-activist-turned-writer. And like the McCarthyism of yore, the searchlight for suspects has turned on innocent bystanders, with unquestioning members of the public -- armed with information on "The Cure" -- taking up the witch hunt for wrong doers. And I am one of them. A wrong doer.

I have been one since I unexpectedly launched the arduous journey of raising a child with autism. One would have to be a gnome living in a moss enshrouded tree trunk in the middle of the woods of nowhere to not have a family member, close or near; or know someone who knows someone with the neurological disorder, or to have heard about it from countless media sources. Our numbers have zoomed to the heights of one in 150. My problem is just what and where have others heard about it and are they now, armed with flashlights, ready to blind me with their sure-fire hear-says that chocolate therapy works? A hug-a-day cures? That this complex brain-wired disAbility it is even curable? And if I have not tried the Cure Du Jour, then I must be a bad, very very bad, mother. Or that maybe there's a dark hole in my spirituality. Like, I didn't pray hard enough.

Dare I even admit that I embrace my child in all of her autism-ness? That I think she's perfect just who she is, with a crazy mixed-up and unique bag of genes born into this world of myself and her father?

 

Jenny McCarthy in her Playboy cover model days

Truly, I have nothing against this beautiful mother who is crossing the country claiming her son has been cured. And who am I to say he is not? Science is rapidly morphing. Conservative researchers at my area leading university are changing their tunes. What we are finding is that SOME children, if diagnosed before Two, and met with intensive varieties of intervention, sometimes "lose their label." But something's still askew -- a learning disAbility. A speech disorder. And what we don't know is what these children will look like when they round the corner and plunge into Abyss of Autism Adolescence. Indeed, as I described the symptoms of my young teen daughter's anxiety, the nutrition Ph.D. on the end of the telephone line noted, "Yes, we are seeing these [and other] difficulties happen with our 'recovered kids.'" Hello? Could it be they never recovered? They just got better? Children with autism do get better. As a 12-year-veteran on the autism/disAbility journey, having criss-crossed the country myself, I, along with others ask: Where is the 10 percent of cured children? It's more likely like one percent. Four in 400,000. I've met two adults who seem to demonstrate the phenomena of "passing through the autism spectrum." Which is as mysterious as the subgroups that have yet to be parceled amid the 10 to 20 or more genes that scientists are decoding as contributors to the disorder.

What I see are children who are paraded as "cured" or "recovered" (what's the difference? Inquiring minds really want to know). They show the same level of symptom "extinction" that my friends' kids who just have the genetic coincidence of probably having a similar subgroup of genes and yet who didn't do stem cell transplants, blood letting and inversion therapies. (I am not making these up!) They go to Kindergarten with their typical peers without an aide...and...ssSHHHH!...: They still have autism!

By embracing this differently abled child of mine, I have been likened, by the cure mindset, to the hypothetical mother who chooses to accept her child has cancer, "throws up her arms in the air," and says "no" to chemo. Back in 1997 it was XYZ therapy. Hot, hateful debates and divisive finger-pointing rhetoric were hurled at mothers like me who chose another route for various reasons: lack of substantiated research at the time, adults on the autism spectrum who said the therapies felt abusive, the gnawing feeling in my gut that violently shook it's head no.The belief that, despite her autism, my child still deserved a childhood.

A swift kick back into that era came in recent years when I appeared on a national talk show featuring the topic of autism. Grace and I were socked out on the behind-the-scenes studio sofa afterward. One of the anchors, known for her cheeriness, not,  acknowledged me long enough, with seeming disdain, to ask in her characteristic nasal intonation: "Did you do XYZ therapy with your child?" I had to rehire my therapist over that. Here's the problem. And it happens too often to families like mine and to others who have children with various disAbilities. It is so easy to read what Jenny did. What the mother featured in your home town paper tried. What you don't know is the dynamics of the child. The financial constraints of the family. The emotional dearth of the parents. The support, the lack of support. The medical care that that child may be getting or unable to get. What caused a particular child's autism? Most (all all) of the time we don't know the latter. (And I don't discredit environmental causatives, but there must be a genetic base or we'd all have autism, triggered by particular toxins we all receive, ingest, breathe, etc.)

Instead of spotlights searing the skies and beaming out from Hollywood or ubiquitous internet sites, or the popular rag...We. Just. Need. Empathy. Support. A kind word. A helping hand. Don't assume we've had our collective heads in a hole and haven't heard about controversial causes or treatments or that we haven't tried them. (And, yes, while we need more than kindness and consideration, I know it's more complex, but I'm dealing here with public perception, attitudes and gestures here.) If you're just DYING to ask me if I've tried Turnip Juicing, how about prefacing it with: "I know you research a lot and know so much more about this than I do since you live this life everyday. I was just curious, have you heard of shadow dancing, and what do you think?" I'll tell you. And, hopefully, I'll be nice about it. But remember, I'm okay here. And I'm not alone in my perspective. I have chosen to wrap my heart around this gift of different-ness. Yes, it hurts too often. I had to reroute my expectations. It's SCREAMINGLY frustrating sometimes. But I've discovered the Joy. I've unearthed the Blessings. And I have lots of Hope for my daughter with autism.

My daughter, Grace, will not be going to college with some of her other peers who have autism. (When a child is two, you cannot know what they will be like when they grow up.) But what I did do was to research, learn, discuss and follow convention only when it felt right. There was a lot that did feel right for this otherwise non-mainstream mama. And then I diverged. I did "crazy" things like allowed art into her challenged world. Her damaged brain, I rightly reasoned, might have a penchant for right-sided endeavors. She was still a kid, I challenged the conventional mode. She deserved the joys of art, music and dance like her typically developing peers. What I discovered at four was the artist that she has become. (www.GraceGoad.com) While she can communicate her basic needs, and we've just gotten a talk device to help her, she cannot yet carry on conversations at age 15, like many if not most of her peers who have autism. But art. Now that is her language. Is is not a language that needs a Hollywood McCarthyistic Cure. It is a language of beauty. Beauty that transcends labels and disAbility. And that, my gut, my head and my heart can embrace.

This post was written last 2008 as a guest post for the lushly written Velveteen Mind. But blogger Megan Jordan was barraged with life and more guest posts than she could handle during her version of NaBloPoMo (National Blog Posting Month -- one post a day in November and Megan's irreverent take on it,  GoBloMeMoFo, of which I'll let you figure out the meaning). So, I snatched it back quickly when I saw, Glory be, O, The Oprah Magazine had taken on it's own Jenny McCarthy. (Sorry no online version available at blog publishing time.) I've written a letter to the editor and my vision that someday my yet published autism momoir will be featured on her show is restored.(Hey, we've already been on The View. Stop rolling your eyeballs. Anything is possible.) I thought Jenny had drowned out all the voices that weren't Cure Mindset. Thankfully, Oprah and her magazine still honor diversity.