There she goes. Just as captured in this picture last night. Grace's speed tends to be break neck and then at other times draggin'-her-feet-slow. Last night, as you see, was the former. That is, last night--the end of the first day of her 19th year.
Psssst! Many successful bloggers have a little secret: They write their posts in advance versus the night before or the morning of...point-click-hit-send. (Not that I consider myself a successful blogger.) But, I did and do prefer to blog in advance as much as possible. So that times like this--I can deliver regular content. Yet, Spring left that plan in the dust with break-neck speaking, traveling, art shows. I'll catch up at the end of the month.
Bear with me. (Yeah, I know you're just dying out there waiting for me to write to you. LOL.) I'll get back here with lots of thoughts about how our lives are evolving as she, year by year, ages out of services, and hence, my scarcity here and to do almost anything other than shuttle her from patch-worked services for two and three hours at a time, always across town from one program to the next.
Hint: I'm not handling it well right now. These past two weeks have been TOUGH. And, I'm trying to give myself some grace about that because I finally realized (duh) once again, it's a process. I'm twisting and turning right now in the I-do-not-like-this and I'm-mad-as-hell-about-it. Been there before. But it gets more real--that cliff, that black hole of diminishing services--each summer. So, I'm here again. And, that is just what the grief process is like sometimes. A roller coaster ride, going round and round and re-visiting the stages of grief in an unending cycle--life with disAbility. Sometimes, like right now, it's more intense. Other times, the processing is a piece of cake. Last night, Grace ate the cake. With ice cream and tried the eat the candle, too.
I'm hanging on. White knuckled. Teeth gritted. I'll get through it. I know I will. I know myself well. I'm a veteran griever. I'll get my zen back. It's like that silver band I've worn on my third left finger ever since I divorced last. (Wink.) I keep losing it and then I keep finding it....For now: gotta run....xoxo
Happy Monday and Happy Birthday. To. Me! Today I am 50-plus-three. And, here goes my annual "Journey with Grace" post on turning a year older....About 10 years ago, my quintessential Southern lady friend, Patsy, who always wore her long, blond hair tightly and perfectly coiffed and lacquered upon her pretty head, ssshhhed me when I dared to utter my age in public. "Leisa!" she chided: "Don't start telling people your age!"
I finally got it this last year that if I worked in Corporate America or some other more traditional institution of employment rather than self-employment (since 1991) and the Office of Special Needs Motherhood, I might be a little more reticent to proclaim my chronology aloud.
But, sorry, Patsy, here's why I do. I believe age is good. I am not ashamed of my age. I've earned what's come with it. And yeah, some fringe benefits aren't so fringe-y. More on that later. I refuse to buy into the belief that we screech downhill upon hitting 40. I'm pretty aghast to hear this sentiment from too many around me born in my decade and the one before it and the one after it. We are still young, people! Like the rest of life, I believe much of age is about choice. Choice of attitude--how we view age and how we treat our bodies. Like, you know, that little scripture passage in "The Good Book" about treating our bodies as temples? Well, yeah. It's all we've got. These conglomerations of cells that propel us around. Science supports this and also that it's never too late to start taking better care of one's health.
Before I come across like I'm preaching the message of "Holier Than Thou," I've had my years lulling in the pits of physical health. I got sick despite my years of regular exercise. (I finally got my lazy butt active during my last semester of college when the stressors of commuting to "the big city" of Knoxville from my small college town while simultaneously balancing a full course load and a full time job. Stress relief! Yes!) But, my diet did not follow suit and my health progressively worsened throughout my 20s when my diet consisted of sugar-sugar, carbs and fried "fern bar" foods. By the time I turned 27, my body declared "No More!" and for the next five years, I collected diagnoses that included chronic intestinal yeast, TMJ, multi-heavy metal poisonings and Epstein-Barr--which was quickly morphing into Chronic Fatigue Syndrome.
Luckily, I lived in Atlanta then and had progressive wholistic physicians who quickly set me on the path to recovery through diet, nutritional supplementation, intravenous chelation, deep tissue massage and amino acid therapies. (Read, I was cured. And, taught a HUGE and costly lesson about health and my body.)
Though I've slipped from time to time, sometimes fixating on my over-love for sugar, I never left the whole foods lifestyle. My supplements are not covered by insurance but the only prescription drug I've taken for years are natural, compounded bio-identical hormones, which, overall, have helped me sail fairly smoothly through a very, very (sigh) long perimenopause. (Whether I've reached the denouement, is still up in the air.)
In my late 20's I also began practicing yoga. Back, you know, before it was cool. Folks, yoga, tai chi or, the most gentle and easiest, qi gong, are the three ways to stay flexible when aging. Don't move and muscles and joints will lock up. Remember, I'm not pulpiteering here. I neglected my diet and exercise when finishing my first book and it took me a very long time to regain my flexibility and loose the extra pounds padded on via daily comfort food indulgence. As for exercise in addition to morning yoga (about 10 minutes, followed by a short meditation--which also has health benefits,) I walk. This week, for Grace's health--as she's experienced a recent, unexplained weight gain--we are starting with a trainer, which I plan to document here. I want not only good health for myself but good health for her.
Read the under message here: I am the mother to a daughter who has moderately severe autism. I am
53, she is 19. Developmentally, she is anywhere from four to six. And I am, did I say it before? I'm 53. Last week was extremely challenging because not only is she a young adult with the mind of a child, she is aging out of services. I want to come back here and write and write and write about the challenges of this third summer of her aging out. But, damn, I'm busy driving her to kingdom-come right now. Hence, I could not manage a post last Friday. (I'll catch up here. Eventually.)
Parents of special needs children--you, my sisters and brothers on this arduous journey: PLEASE take care of yourselves! You're not going to be there for your child if you eat and live like there's no tomorrow. I am aghast at the epidemic of indulgence-induced obesity in our land of gross-plenty. WE are breaking our healthcare system. We are to blame. And, yes, again, I've had periods of over-eating: in 1997-2000 to soothe my grief over my child's diagnosis. In 2007 to 2011 when I said yes to a relationship that was destructive. Again, I used food to stuff down the feelings with which I refused to deal. And, at late 40s and early 50s, I couldn't bounce back from the ill-health effects of weight gain as easily as I it did when I was in my late 30s and early 40s. And, I knew that the path of pills and bowing to the system of medical dieties would not cure me. Only making wiser choices and getting back to the clean virtues--eating and living a whole foods lifestyle would and could work for me. And it is working. I gained 15 to 20 pounds in said relationship. I've got about five to go now. Weight Watchers works well for me because it teaches portion control and just what the cost of each food I put in my body. Right now, I'm using me as my locus of control. Relying on the internal and not the external....
I wanna live. And I wanna live well. I wanna live for me. And, I wanna to live for my daughter. And, I wanna live--in the ways that are unique to me, using my gifts--in service to my world. And I know that to do so, it's a web of commitment. A dedication that I make each day. And the more I do it, the more natural and innate it continues to become. I choose to age well to the best of my ability. And I choose to believe that age is not a curse but both process and progress.
Hello, 53. Thank you for choosing me today. Happy birthday. To. Me.
Do you know how important your voice is to the world? Every person has a story. Really....This is a repost with a slight revision or two as today, I'm, again--now for the third time--last was in Chattanooga--priviledged to join forces with Lacey Lyons, Belmont University adjunct English professor and Courtney Taylor Evans, of the Vanderbilt Kennedy Center. We will present "Sharing Your Stories: Advocacy Through Personal Storytelling," at the 2013 Tennessee Disability Megaconference. There, we coach parents and adults with disAbilites on how to write their story via Tennessee's Kindred Stories project. (I've one on their website somewhere. I think it's this one: "[...]I'm giving this summer the finger!)
Because this applies to so many people who for one reason or another are not sharing the gift of their voice, I'm posting part of my presentation here on "The Journey with Grace":
Get Over Yourself and Get it Out Your Story!
Folks, you’re gonna have to scrap your ego to be a writer. Writing never happens with a flourish of a magic wand and a sprinkle of fairy dust. Every good story you read in reputable newspapers, books and magazines was written and rewritten and rewritten and rewritten. Did I mention it was rewritten? And, EV.RY.BOD.Y needs an editor. Everybody.
There’s no muse that just poofs a perfect story into your head! It takes work! Writers HONE their craft. And so should you.
In fact, highly successful multi-book author Anne Lamott coined a term: “the shitty first draft.” I wrote a book nine years ago that I’m now rewriting. And the book I wrote nine years ago was my shitty first draft. (In fact, one reputable book agent praised my book proposal profusely, but returned it because of my written samples. Good thing. It's taken another nine years of living and the publication of my actual first book (another title,) to get to where I am now. And guess what, it will be rewritten. And. Rewritten.
Nike came up with a slogan. Bet you know the one: Yes! "Just. Do. It!" Again, having a muse is a myth for most of us writers. It takes discipline. Pure and simple. Sit down on your patootty and JUST DO IT.
If you’re having trouble, pull out a journal or a scrap piece of paper and do “The Artist’s Way.” Dump your thoughts onto paper until you’ve written three pages or 30 minutes. Many writers start out their days with this exercise. Go ahead! Write down whatever comes to mind. Your irritation with your significant other. The memories of the bad tuna sandwich you ate for lunch yesterday. Your to-do list. Anything! It clears the clutter so you can get down to to the real business of writing.
And then, can the critic. Tell that mama to. Shut. Up. You know. That whiny, pointer-finger wielding voice inside your head that’s judging mercilessly every word you put down on paper. Ignore it! Tell it where to go! Remember, just do it. Get the words out and then you can go back and rewrite.
Well?! What are you waiting for?
----------------------------------------------Image courtesy of Beth Lehman via Pinterest via Kristen House of A Novel Idea
Descending down the long-tall escalator at one of our local cinemas the other night, my friend and I glided by the guragantuan movie posters. We chuckled at the silly characters, such as the one-eyed, green monster wearing braces who was so ugly he was cute. Passing by each, I remarked, "I'll take Grace to see that this summer!" "Yeah, let's do!" my friend exclaimed, excitedly. Reaching the bottom floor, we walked down the corridor toward our theater and it hit me: I'd been dreading this summer.
On one level I knew the dread was there. I'd spit at it in moments of lament about falling off the cliffs of autism services into a black hole of adulthood. And in other ways, it was if I'd unknowingly experienced a home invasion that left toxins that poisoned my entire being....
Negative thoughts are like that, you know. Science shows what we think can become toxic chemicals that destroy not just our attitudes but the very bodies in which we move about on this plane. And, I'd been guilty of that thinking about this summer. And last. And the one before that and the one before that when I first smacked into the wall that I'd been warned about when my daughter was diagnosed at age three. The one that would be there as she sped toward adulthood.
Back to the movies. Thinking about those, the laughter, the silliness, the togetherness it would bring...that brought joy. And, it was accepting What Is. And, the Is-ness of it all. Truth is there's a lot of things we can do. They cost money. They cost more of my time and energy. The energy of a body that's older and a self that yearns to write and create more on her own. And, yeah, I'm not real wild about that, but it Is. And accepting the Is-ness of this new-to-us reality, I siphon the toxin. It also gives me breathing room and the knowing that I must do something about this Is-ness.
This summer, if all goes to plan, I'll spend another portion of another vacation exploring what's working in neighboring North Carolina in the arena of art, entrepreneurship and social enterprise for adults with disAbilities. Specifically, I'm exploring creating an integrated creative arts co-op that offers the options of maybe a fine art studio, quality crafts and a bakery. Not an adult day care. Not a segregated workshop. But, a meaningful work-experience-environment where art by adults with disAbilities can be created alongside typically developing artists who share studio and gallery space. For those who are interested in joining but aren't artistically inclined, there's always packaging, marketing, delivery, etc. This is not an original idea, it just hasn't been done locally, exactly, that I know of, at least. These are trends happening in the field of disAbility nationwide. I'll need a lot of help. Some art-appreciating parent types are with me. Some artists in the greater community are with me. Yet, right brainers need the partnership of left brain cells that can write grants and start up non-profits. I'm a pretty balanced right and left brainer but I know that my energy sizzles to crisply burnt toast rapidly with these types of left-brain intricacies. (Hint-hint.) Just like raising our special children, it takes a village, each bringing their own set of gifts to the project/person.
So, back to Is-ness and What Is. It starts with my attitude. An acceptance of even the things that I might not like. ("Rocks are hard and water is wet.") It's a zen sorta surrender. And in surrender, I release the struggle. And in releasing the struggle comes peace. And, in peace is a very fertile ground for Joy. And to enjoy. Enjoyment of even the Is-ness.Is there an Is-ness is your life with which you've struggled, be it disAbility or otherwise in this big One we call Life?
Pictured above: GraceArt, Untitled [Heart] by Grace Walker Goad, for sale and currently on view in a all-new 2013 senior artwork solo show, sponsored by VSA Tennessee in the Polk Theater Lobby TPAC, the Tennessee Performing Arts Center.
Graduation, weekend before this last, was one of those moments. Magnified by 10. Grace graduated classic Grace style. In sharing in this post, The Little Drummer that Graduated Yesterday, about my daughter with autism's many antics during the ceremony, I inadvertenly left out a few. Like:
At one point during the ceremony, she wasn't having anything more to do with that scratchy cap on her head. She ripped that mother off--rescued, once again, by her dear teacher. Then she proceeded to scratch. And scratch. And scratch her head. That sucker itched....Like every other hat she's ever put on her head or her helmet when she rides at SaddleUP Therapeutic Horseback Riding.
And then there was the moment when she lined up to follow her classmates's march across the stage. Dang, those protective undergarments sure do like to form wedgies. No problem. Grace reached down beneath both cheeks and gave 'em a good yank. Oy.
Last post here, "On the Journey with Grace," I wrote about how I missed the ceremony trying to capture it on digital. I wasn't totally absent. Just removed. Somewhat out-of-body and surreal. I didn't obsess over it, but I did think time to time as I snapped photos at the start of the day what she must of looked like to any folks seeing her there, her funny, totally uninhibited, totally inappropriate behaviors. Of course, most there were watching their child, grandchild, cousin, etc., not mine. But, really, some had to notice the kid who could not keep on her hat, who rushed to the back of the seating area to break out into a wild dance during a clip of funky music played. And there was the wedgie. And then, the infamous beach ball.
There were a couple of times early on, before the ceremony, when I caught a couple or two staring in our direction gaped mouth, part quizzical, part dumbfounded at what they might be observing. On that day, my spontaneous reaction was to grin at them really BIG, all teeth barred, lip corners upturned in an exaggerated smile and an equally exaggerated fast wave. I think they got the point. (Quit staring, people!) (They did.)
All those antics, all the things my daughter did, though she wasn't supposed to--the total lack of awareness of protocol and propriety? Chuck that. "Oh, to be so free," as my friend Ken put it.
And so, day after the ceremony, looking back and reading the comments on Facebook beneath my post about her unique take on graduation, I was reminded that you can either laugh or you can cry on this wild ride called the autism life journey. Mortified versus crying is more like it, really. I know many parents who are mortified by their children's antics, at least early on. Even when they get this age. And, yeah, sometimes, I am, too, like when they involve a total stranger--such as quickly grabbing a stray hair off the blouse of an-unknown-to-us-woman as she stands next to us at the deli counter. And, of course, the hair more than once just happens to be atop a protruding portion of the stranger-woman's chest. Oy. Quickly, I explain: "I'm sorry.She had autism.She doesn't understand!" I say as my face flushes hot and burns and I hold my breath awaiting their response. Usually it is gracious. But not always.
So, yeah, graduation was a culmination of soon-to-be 19 years of inappropriate behavior. And I say? Sometimes you have just got to laugh. There is humor in this strange, awkward existence called autism. And if I forgot to be light and see the purity, the innocence and the ridiculousness and the downright funny in this socially backward life, then I might cry. And be perpetually mortified.
Nope. Not me. I chose laughter long ago. I signed up for the insider's parent-elbow-in-the-rib-cage-belly-bouncing-head-down-hand-over-mouth-suppressed-chuckle-when-needed-club. We're not laughing at our children as in making fun in a mean-spirited way. We're simply surrendering to something, too often, beyond our control.
C'mon: Laugh with me....As they say, it's: "the best medicine." The one that "cures what ails you...."
Graduation came and went. Nearly a week ago. And, I am still processing it all. The day. This milestone. Very slowly processing. Yet, perhaps not yet willing to take the time to full process it all. I've been working on my book this week. By the time this blog post publishes, I'll be on the way back to Louisville for a weekend of art museums and play.
I confess. I hid behind a camera during the ceremony. There were 22 of us there in the Grace Goad Fan Club. Sorry, folks, but only two of you can snap pictures without cutting off body parts, including heads. One of you would have bitched about the camera the whole time and the other one of you doesn't like me. So, I held that big digital device up in front of my face and let er rip on sports mode. ClickClickClickClick. It wasn't until Grace exited the stage that I realized what I'd done.
Missed. The whole thing.
And. I know better.
Once, at a conference many years ago--I can remember the dress I was wearing and my age, 26--an older, wiser woman came up to me and said: "Your reporter pad gives you a chance to hide." Cameras do that, too. I recall reading how someone went whale watching and decided not to try to capture it because in so doing, they'd miss the glory of the actual moment of being in the presence of that incredible creature. I tried to remember that the few times I have been fortunate enough to watch whales.
More on this Grace's graduation and how it's shaking down will come. The continuance will share what I did experience behind the lens. (This post--The Little Drummer that Graduated--shows what I and our family, at least, saw.) And eventually, I'll process the feelings over this momentous occasion. Probably part of the reason I've not yet unpacked them is because they are bittersweet. In ways that only other families of children with autism and other disAbilities can relate.
It will come.
The above photo: one of two in which the photographer was documented being at the actual event.
It was 1998 and we were a year into autism early intervention. What you did or didn't do beyond the standard speech/language, occupational and educational therapies was controversial. I found it all grueling. The rigor. The constancy. Where, I asked, was the childhood pleasure of creating art, the joy of music and the ecstasy of dance? My daughter needed help to attend the arts classes my friends' typically developing children attended. I kept on with the rigors of early intervention, but I ventured toward a very unconventional route, beating the bushes to find in Middle Tennessee dance/movement, music and art therapists.
What our family discovered was that our preschooler had perfect pitch and perfect rhythm. To this day she loves to cut a rug. Wildly so. But visual art? I remember the look of excitement and wonder after the first session with our first art therapist. We got it then that our daughter had an affinity for color and composition. She had a gift that she would demonstrate again and again over the next 15 years. An ability that was often years beyond her chronological age.
The creative branch of our journey all began with an exploration for wonder lost in the deluge of teaching her the basics she didn't possess--much of them still does not. I first heard Temple Grandin speak around that time. She told parents that when our children turned 14, to zone in on what interested them for it would be their future social group and career paths. We found ours 10 years before that. We found it at four.
While I attended a portfolio-based arts high school in South Carolina and gravitated to art all my life, I never did much overtly with it come college. I allow my family's taboo attitudes toward art to chain me for many years if not still now. But, in the work of my daughter, I knew what to look for and what I was seeing and I knew, because it has been my career--30 years in communications--how to package and market like hell. I also began reporting on art here in Nashville nearly a decade ago via magazines, newspapers and my blog.
The deal is that my daughter is not that unique. Well, she is and she isn't. We are all unique. True. But I just knew what to look for and how to help her. There are other artists (with autism and other disAbilities) like her world-wide. Just not that many here. We are in a city of art but a state that does not value education and the education of art. Nor the education of students with disAbilities. Many parents, many people, everywhere, do not understand art. They do not realize there are legions of artists who paint abstractions for thousands of dollars and more. So, I've watched other classmates of Grace who I knew had talent go undiscovered by their teachers, the system, their incredulous parents, even when told them their children had ability. I cannot fault them. The world, especially our culture, does not get art. It is underfunded, underappreciated, misunderstood, devalued. Match that with a severe disAbility and it gets buried more times than not.
It's time to change that. We must change it. We must change it for those growing up behind us. We must change it for those who are already grown up. And, sadly, it is often only then that we do discover their talent for visual art and even begin to give chances for adults with disAbilities to express their often innate ability. Lost potential. Lost pleasure. Lost profit.
Let's go back to the beginning. The beginning of making art for the fun of it. And then see where it can take us. Let's go for the wonder and surprise.
Come this Thursday, May, 23, and learn about Art, Dance/Movement and Music therapies. I'll be there sharing my journey into these Creative Expressive Therapies. Location: Room 241, Vanderbilt Kennedy Center. Hosted by the Autism Society of Middle Tennessee. Today is the deadline for free childcare during the workshop.
The video above launched the beginning of Honestly Autism Day in Baltimore. We'll be sharing this and other videos on music and dance/movement before our presentations start. We'll be explaining why having someone educated in developmental disAbilities plus a creative art is often the strongest link for reaching a person with disAbilities' maximum abilities. Please share this post with others so that they will know. Everyone deserves the joys of creative arts. Everyone deserves a chance to explore whatever their potential. And, everyone has some sort of potential be it art or otherwise.
About to turn 19, this girl/woman ~
graduated Metro Nashville Public School system yesterday. And she did so to the beat of a different drummer. The same drum beat into which she entered this world. A very different, odd, quirky, funky beat.
And, in Classic Grace....Well, let me back back up a bit....The Valedictorian and Salutatorian of Hillsboro High School, together, gave a very different kind of speech. One unlike I'd ever heard delivered by a school's highest-achieving scholars. In cahoots with the speakers, the beloved teaching faculty stood up on cue and threw, first: candy; then party hats, (which some soon-to-be graduates donned and proceeded to wear through the ceremony atop their mortar boards,) and then...beach balls.
Well, Grace never met a ball she did not like and then subsequently destroy. (Basketballs are the only variety I have known her autism-bionic strength not able to destroy. I'm serious. Trust me.) Luckily, she didn't pop, bite and subsequently deflate any beach balls. Instead, just as she was to stand with her row, she spotted a tiny piece of candy beneath the chair before her. (Grace also never met any variety of food--excepting eggs--she did not immediately consume regardless of where it was found.) To the rescue, her ever-extraordinary teacher, sitting one seat, an aisle away, quickly redirected her, got her to rise and follow her seatmate in the march toward the stage. But, as fate would have it (pardon the cliches but this is cliche of Grace,) just 500 yards before the stage she reached down, ever possessing a set of eagle eyes, and voila! A lusted-after beach ball! (We'd seen her long for one when they were thrown out to her classmates lucky enough to catch one.) So, that lone ball was claimed immediately by our girl, it sides slapped loudly as she tossed it up and down between her hands.
No big deal. Just Classic Grace.
At least it was no big deal to all 22 Hammett and Goad family members--parents, grandparent, spouses, aunts, uncles, first and second cousins, stretched along a section's worth of front row seats. Her family, who traveled from different towns, different regions of Tennessee and two other states--proceeded amongst themselves to guffaw and quietly cheer their only only child, only grandchild, last grandchild, youngest cousin. That? That. Was our girl.
That? That. Was Graduation Grace-style.
Stayed tuned. As this tired momma aims to get her groove back on with "The Journey with Grace," the blog, and this week, the book. I really do miss writing substance here. Swollen with pride but relieved this week, this month, this spring is about to be over. Details on the future, Grace-style, coming soon. Don't forget to check out all new GraceArt at TPAC Polk Theater lobby through mid-August. Namaste.
About the photo: this very poor phone picture--doctored in Instagram, as I am currently too tired and dread downloading the 3.75 million pictures I took with my clunky Canon--illustrates well, Graduation Grace-style...facing, during much of the ceremony, anywhere but where she "should" be. The last cue, given by the graduation speakers was some funky music, to which Grace--the girl who also never met a tune to which she didn't break out into a wild dance--proceeded to go behind the chairs, her back facing her classmates and dance toward the onlooking guests. Oy. Teacher, again, to the rescue. Poor Grace, she never understands why we must kill her joy like that. ;)