Western Lake, Grayton Beach, Fla., Fall 2009, copyright: Leisa A. Hammett
"I am aware, there is but One Life, I am this field of creative potential in all Its' power, glory and possibility.
"I accept there is always a way to greater good. I act like it, think like it, imagine it and behave like it.
"I anticipate what it feels like to achieve my desired outcome that blesses all. I dare to imagine the dream God has given me as really being so. I take the time each day to picture it as I know it can be, eager to be a lover to life. I do this with great love, joy and deep appreciation to Spirit that it is so. And so it is."
It happens every January. Like clockwork. The phones of the local Autism Society begin to ring. Frequently. The January Autism Orientation, which I co-lead, has more than it's usual numbers of reservations. It's time, people figure. The holidays are over. It's time to deal.
Deal. Yes, please do. I do not mean my words to sound harsh or to be read as criticism. I am well aware that we all come to this journey via different routes. Early on I was clear that how I dealt with autism was based on my familial upbringing, my education level, my personal growth, my professional skill set and my sense of spirituality--specifically to this situation--where I believe God is in this world and how s/he operates in our reality. Regardless of the paths we take that lead us to the disAbility journey...BAM! Suddenly, ready or not, we're here!
Deal. Deal, please. It had been awhile since I was exposed to what I heard and witnessed a few months back at a seminar about a crucial juncture in the lives of soon-to-be adults with autism. I'd forgotten that some disAbility families suddenly find themselves at a precipice and they aren't ready. They aren't prepared. Since then and many times before I've seen parents shocked to find themselves at crucial transition periods or events in their children's lives that could have been prepared for and would have been less of a shocker. And then there are those who reside in a condo overlooking th' riva, as Husband 2.0 used to say. You, know the River of De-Nile....Reality happens whether we acknowledge it or not. Be prepared. Please.
Tick tock. Don't wait. It's a New Year, friends. Yet, pacing is important. So is doing. Doing and pacing aren't mutually exclusive. And while you're doing at a healthy pace, you're doing for your future and your child's. Don't get caught in the future with nothing or too little left undone. There are resources. You can do it. I know it's hard. I'm there with you. Your future and your child's--my future, my child's--depend on it.
An early holiday greeting (Happy Holidays, et. al.,). I'll be back here on Tuesday....Above: I'm a bit nutty about the work of Nashville-area artist David Arms. (How could anyone NOT be?) I've been wanting to feature one of his amusing, eye-and-soul-soothing images here for a very long time. Arms was gracious to give me the pick of his galleries for my "Journey with Grace" Christmas image for you readers. Interestingly, the one I chose for its' visual qualities was named "igbok," from his 2008 portfolio. I've featured igbok on "The Journey with Grace" many times.
When I recently mentioned "igbok" to some members of the spiritual center of which I am a member, they commented in unison: "IT IS ALREADY OKAY!" So, true. Even in what seems imperfect in our lives in the moment, it is Divinely Perfect and Perfectly Imperfect--as I've come to say. This last year was much about that for me and knowing that it was igbok and already okay helped me to journey on through the tough times. Blessings to you this holiday season, dear readers. You gift me with your readership and encouraging feedback! (I'll always take More especially here on the blog itself in comments! Wink.)
Answer me this: What's with kids and bandaids? I taped up about a half-dozen blisters on my daughter's feet yesterday afternoon. She was rapt. And then, she asked for more. She's 17 and coulda easily put them on herself. She usually does. But as I was applying salve to her boo-boos, I was also nursing a case of mother guilt. I can't seem to buy the right shoe to accommodate her wide Hammett toe box and her narrow Goad-Walker families' heel. I have her fitted, shell out bucks and purchase good shoes, and they tear up her tootsies. (She also insists on tearing out the insoles of her shoes and going sockless.)
Our history with bandaids has morphed over the years, according to Grace's languaging abilities. Each word--her ability to connect brain to tongue was a victory. First came "hurt." Then "hurt" accompanied with showing us the wound. Pointing is BIG with autism. I mean REALLY BIG. It does not come naturally and has to be learned. Word + pointing. BIG DEAL. At some point she threw in "boo-boo." And then she arrived at bandaid only to pronounce it "bondaid." I have a persistent child. It is both endearing and annoying. I furrow my brow, lean forward and keep repeating "What?" and trying approximations of the word until...DOH! I get it: bondaid = bandaid. Got it. She's happy. Not just for the prize bandaid but that she communicated and I understood.
As I opened each bandaid yesterday, applying one after another, a pile of paper strips formed on the floor next to me. I looked into her face. Still a little chimpmunk-ish from last week's wisdom teeth removal. All the while, as I tickled her then and again, as I shared her grins and giggles, I thought about the juxtaposition in front of me. This woman-child. My daughter. And though she was trying, she couldn't quite contain her joy. Every cell exclaimed: "Oh! Bandaids!" Err, I mean: "Bondaids!"
Photo copyright: LeisaHammett.com, 2009; (composed in October after wisdom teeth removal).
Pandora played carols quietly in the background. Cider simmered wisps of cinnamon and clove into the atmosphere. With our fingers, we consumed chunks of warm, moist gingerbread. It had been about Christmastime last that we three had met like this. Only last time we met in the new 3,300 square-foot home I shared with my husband. And this year, we met in the 1,200 square foot rented condo I was sharing with just my daughter.
We took turns swapping stories, updating each other on our lives. A tremendous creative endeavor had united us two years earlier. One of us was 60something; myself, 50something and one of us still 40something. To the team, we'd each brought a creative discipline and created something grand. One of us was a grandfather. With swiftly moving fingers, he summoned pictures and videos on his phone. I shared about Grace's art and the other told us about her teenager's creative venture. We shared about how our lives had moved on, what projects we were pursuing or not pursuing, and what exciting projects we planned to pursue next in the creative arena of our work lives.
One of us had house woes, another car woes, more than one of us had family members with chronic conditions and one of us with some of their own. And I was leaving a marriage that I had thought held such promise. Our stories of Joy, of challenge, of woe, of mundane and brimming activity and commitment wove a tapestry of a year's time in our lives. We smiled, laughed and celebrated the tender and the victories. Our hearts winced at the challenges--our own and each other's.
As we parted with one more thread of our lives quickly woven into the tapestry of our stories I thought about what we'd each shared. The weight of it all. There was some sorrow. Some pain. Some heartache. But, we each bore it. If there was spilled milk, we had each wiped our tears and moved on. And as we stood outside my patio gate, exchanging our goodbyes and holiday wishes, I thought: "This is Life. In each our shared stories, this is the tapestry of Life--woe, challenge, Victory, Joy. "*Rinse. Repeat. Move on...."
*Of course, I do not mean to imply that in the minutiae of Life it is this easy. And ideally we each work through these circumstances, processing it, learning from it, healing through it. The point it that we recognize all that is Good and Beautiful and despite challenges Celebrate and Live Life Fully.
Despite my self-pledge to post less and keep it lighter this holiday, today's post today is published in honor of the thousands of Tennesseans living with disAbilities who receive minimal but important funds from The Family Support Program, which is currently on the chopping block with Gov. Bill Haslam and the legislature raising the ax over the alter of some of our state's most disenfranchised citizens. SHAME! We are raising our voices. We are writing letters. I have volunteered to speak and meet. Join us and believe that we will be heard....
Let's talk money. Let's talk green....
When I tell our story--our meaning both the personal and the autism community--sometimes I insert the financial hardship that this pervasive and enigmatic disAbility poses. It's time to expound on that. Right now. Right here....
If you are living outside of our community, from the outside looking in:Did you know that it's very common for a family of a child with autism to mortgage their home one, two, even three or more times just to pay for things like, oh, say...helping your child learn to talk? That is why when I sold my house, then, still co-owned with Grace's father, a year-and-a-half ago, there was virtually zero equity to pull out and invest forward. Virtually pennies.
Yet, I have also often stressed it is a privilege to go onto debt. Huh? Yeah, we were able to refinance our home. We were able to borrow. We found ways to fork over $20K to pay for speech therapies when insurance denied us our state rights and shut the funding flow. Privileged because having worked one year (1999-2000,) as an Autism Society of Middle Tennessee parent representative, I saw the spectrum of parental finances. Like the single mother who works the night shift at the local convenience store. The parent who lives in a trailer.
My behavior therapist friend serves rural clients who are indigent or nearly and receive state funded health insurance from TennCare. Ironically--but not begrudgingly--so many of the rest of us go broke and can't afford that quality of care. I have friends who make decent salaries who have done less well than my family in securing out-of-pocket services. Our children's futures and our own are at risk as a consequence. We all bear scars from the battleground of profit-mongering insurance companies.Companies such as Blue Cross Blue Skrew and others live on to slay more poor schmucks and build new multi-million corporate headquarters and fatten the wallets of share holders!
We families with children who have autism are upper middle class. We are middle class. We are lower class. Financially, we are rich, poor and the levels in between. Financially, like our children, we are packed in all along the spectrum.
And then there's the upper class. I have friends in those greener pastures, too. Early on, by observation, I figured that a family had to earn about $500,000 annually to be able to live as they would normally--affording the vacations and other luxuries they would still enjoy if they did not have autism inhabiting their lives. That said, I've watched these same families lay out inordinate expenses for in-home employees, special treatment rooms and inordinate amounts of exorbitant therapeutic equipment. They did blink at the costs to providing the optimum for their children.
I am grateful that one of these friends sternly and kindly reminded me: I and other parents might look longingly at what they can afford for their children and the rest of their lives, but they, like us, still struggle with autism. Money does not make the disorder go away--try as some might. And that is one of the reasons, I, and others theorize (and have observed) that the wealthy are one of the parent groups that often have the most difficulty accepting the diagnosis of autism. A magic wand, a perfect potion to make it all go away--cannot be bought. It does not exist. (Oh, yeah, yeah, one percent, diagnosed with milder form PDDNOS who get diagnosed before two and receive intensive early intervention. One percent. Speech difficulties or learning disAbilites still remain though a label is erased.)
Lest I sound scarcity minded here, anyone reading The Journey with Grace for any length of time, I hope, knows that I feel blessed with the Gift of my daughter in all that she is, in all the challenges that she brings, that I am gifted with the privilege of being her mother and that I am given the Gift to Live this beautiful (and challenging!) experience of Life! I feel blessed. I have a rich life--knowing that love and happiness are not bought. There's a roof over our heads and food on the table. I am Grateful.
None of that, however, makes financial challenges associated with autism disappear. And it's important to talk about it. I am at THIS end of the journey, or rather this juncture--because that's just the point. It's not an end here on the periphery of Adulthood. It's the beginning. A beginning with a severely diminished set of services and potentially even greater financial demands.
Again, I am privileged to have been supported by my daughter's father for many years to have mothering be my primary role. It was only in the last decade that I returned to my writing persona. This summer was a rude reminder of the serious challenges to working outside the home full time and consciously parent a child on the autism spectrum, especially one more involved more severe, such as my own. Very humbly and with great admiration I bow to the many mothers who do. I know that many have no other choice.
Our little kids with autism grow up. They become adults. They need jobs but many cannot work full time. If we recognize that we, as their parents will not live forever, despite our most earnest intentions, that some of us unapologetically do not want co-habitation with our children to last forever, then our children as adults also need housing. And help within that housing. Who pays? Certainly not Tennessee. In most cases. Three thousand families await acknowledgement that we exist and we must first qualify with a dual diagnosis of intellectual disAbility to receive Medicaid Waiver services.
Financially? It's a fiasco....
Here's a list of previous posts from "The Journey with Grace" featuring Autism parent friend and singer-songwriter Tammy Vice. I am pleased to insert that little bit of happy into this otherwise dark and real post. And that's just it. If we choose to live fully, we parents of children with disAbilities do find ways to embrace happiness. The state could do it's job and make it more universally easy to meet our many financial challenges.
I'm about to make a gross over-generalization here:Photographers are "nice" people. When you are holding an instrument that some cultures believe captures the soul--and maybe if the operator is especially good...at least the essence of the soul--you've gotta have some element of snake charm about you. Back in the day, I used to travel with those guys (and a few gals in the mix.) I'd walk into a room with a reporter's pad and you'd think "60 Minutes" had arrived on the scene. I'd turn around mid-interview and everyone in the place was putty in the photographer's hands. Everyone was his/her new best friend. The waitress. The janitor. The grandmother....Damn.
Though we've never traveled together, Jerry Atnip would be at the top of my list of those nice guy/gal photographers. Mr. Clean Jeans. Not a specka dirt on his own soul. A deeply spiritual, unassuming man who quietly lives his faith. And a portfolio--a career span and breadth of subject matter--that seriously rocks. He's among my top fave photographers in town--big guys, nice dudes--whose work wows and woos me. Others include John Guider, Bob Schatz and Jack Spencer. (Pssst: Don't let Jack's gruff-tough exterior fool you. I wrote the first cover feature of him back in the pioneer days of NashvilleArts Magazine. I know.)
Atnip's done it again--created a stunning new body of work, only this time he's turned his camera toward home. The South. Nuanced backroads and highways, where, as he describes in his latest book--Gone South: A Collection of Images From the American South--39 heart-snatching photos where "past and present exist in tandem."
Images shown above: Atnip as captured in the characteristic moody style of the no less amazing Jack Spencer. When I first saw this photo of Atnip on his Facebook profile, all I could say was: "Dude!" Seriously. Second image, above, No. 190 from Atnip's Gone South: A Collection of Images From the American South. Last image, No. 144, ditto.
Gone South is available in standard and limited edition. The limited edition version (only 200 copies,) includes a signed/numbered print. Both editions can be ordered at jerryatnip.com.
So, my conscience just got it's rearend kicked. You see, I didn't name any women photographers up there. And I have a lot of local women photographers whose work I love as well. Children, family and portrait photographer Rebekah Pope, was my collaborator on our book, From Heartache to Hope: Middle Tennessee Families Living with Autism. "The Journey with Grace" has featured the work of Wendy Whittemore, Stacey Irvin (here and here) and also Tamara Reynolds. Three of Tamara's photos grace my condo's wall of photographs. So, I just learned the girls are having a show: "The F Stops Here." Irvin and Whittemore join other women photographers in this juried show Sat. December 10, 6-9, Studio East. You go, girlfriends. You rock, too. Totally.
Bite. Pull. Tear. Quickly: lick the juice before it streams a forearm's length. This morning I stood above my kitchen sink peeling an orange for breakfast. As I sloughed the thick rind, bearing the translucent juice-bursting slices, I thought of her. And when I thought of her, I thought of Christmas. Every year, when my sisters and I were growing up, and as long as she was able in her last years, my mother plunged an apple and an orange and some shelled nuts into the toes of our Christmas stockings. I took it for granted that they'd be there bulging in the stocking toe and thought it a bit odd. But it was as I grew older and merged into adulthood that I came to appreciate all that her generation--"The Greatest"--endured. And, finally, I got it. I understood the mystery of the stocking stuffed fruit and the story behind it.
As we dissected the contents of our stockings each Christmas, Mother was just a tad wistful as she told us, year after year, the meaning of this age-old tradition. But more than wistful, she was joyful, relieving those memories, like a kid on Christmas--which it was--and sharing them with us. She was not sad, in those moments, about the poverty in which she grew up, she was happy relieving the abundance of rare fruit on Christmas morn....Most times, oranges and apples are something that I give little thought to other than delighting in the plethora of favorite varieties at the market and enjoying them almost daily during cold months. I buy nuts unshelled year-round, pausing only to smart from sticker shock. But to mother, to a little girl growing up during The Great Depression, these were items of true luxury. A delicacy. A delight. These things, these things I buy so casually, were rare during her hard-knocks childhood. They meant Christmas for a poor little girl.
And today, as I peeled that taken-for granted orange, I stopped and glanced at the calendar. Yep. December 7. It was this day in 2008, three years ago, that mother left us. And then finally, this spring, my father would follow her--nearly two-and-a-half long, difficult years for my family.
It is important for me to remember as I sort through the storehouse of lifetime memories--mine and hers and of my father's--that I take stock of what she endured, what she lived through to become who she was. Of all that formed her and thus formed me. Not always so pretty....It is what it is. Was what it was. And now it is up to me to say thanks, be grateful, remember. To Love unconditionally with unfettered compassion though she may not have always been capable of that for me. Now it is up to me to nurture and mother the me of yesterday, of today and tomorrow. I have been given my legacy and now it is my choice to write the ending....And, so...I am.
Once more, Mother: Goodbye. Thank you. I love that I often think of you when eating oranges. It is but one small way that you continue to live within me forever.
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It is difficult to launch an e-book when you keep thinking you're done but then the essays keep arriving in on the muse of emotion and memory. But it is in formation and planning still: Sandwiched: Death, Dying, Aging Parents and Their Adult Children. You'll be the first to know when it is finished and yours to download.
1. To perform in a manner physically, cognitively or emotionally that is not consistent with a standard population.
2. Different capability recognized as out of the norm.
3. A person who operates differently abled.
4. Individual performance that another person may interpret as negative or lacking because it does not appear to be standard in their society.
That man has a diffability because he is in a wheelchair and cannot stand up to reach for things on the tall shelf.
My friend in school has individual instruction from the teacher because she is diffabled.
People with diffabilities have to do some things differently than I do.
There are still some people out there who think that anyone with a diffability is lacking in some way. They do not realize that under many circumstances people that have diffabilities can learn to do something if it is taught in a different way or modified. So, a person that is diffabled has endless possibilities.
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Alice Duva is a horseback riding instructor in Nashville. Photo credit: Illustration by "Gracie," an 11-year-old living with Asperger's and the daughter of Jenna Farelyn who blogs at mademorebeautiful.com.
Dear Occupy Nashville, Thank you for fulfilling your civic duty, for telling your truth, for standing up for the little guys--most of us are they little guys. Thank you for being passionate, for being brave, for sacrificing for those of us who just cannot. Thank you for being peaceful, for honoring the Spirit of our uber friendly city. Thank you for giving voice to and living the change that must come. You are powerful, you are appreciated. Enjoy the scones and the clementines, Leisa A. Hammett, Sunday afternoon, Dec. 4, '11
Honestly? I wasn't sure quite what to make of the Occupy Wall Street movement at first. Or, for quite awhile. Especially when I learned it was a melange of political facets. But, over time, I began to digest the essence of the message and I applauded but stayed away even though many I knew were going there, some inviting me to join them. As a mother, I could not risk arrest. But Sunday, at the suggestion of a friend, I was able to deliver some grub to the hungry, grateful protesters.
I believe it is not coincidental that this American movement has formed now at the cusp of 2012. I have come to believe that 2012 is a precipice of change that must come, whether it is Arab Spring, routine environmental rape, corporate greed, or lack of consciousness on ALL OF OUR parts. I was interested to learn that many Europeans are fascinated by the Occupy movement. I gathered it was seen as a bit ironic that we, the land of plenty, the champions of democracy would have such unhappy campers (no pun intended) akin to much of the rest of the world, at least to the degree that is demonstrated by Occupy protesters nationwide. This, and 2012, are about the little people; the abused; the physical earth--even--demonstrating with its' own from of violent protest, saying, yelling: ENOUGH IS ENOUGH!We must have equality! We must have justice. For. Us. All...And. That. Is. Consciousness Rising!
Special thanks to my new friend Peter Burr, chairman of the Williamson County Democratic Party, for escorting me to Nashville's Legislative Plaza Sunday afternoon. I have walked the beautiful pathway to our state's capitol many times in my own pilgrimages to lobby our legislators on behalf of the rights of individuals with disAbilities, such as my daughter. I have stood listening to stump speeches by democratic party leaders. I have gone simply to admire and photograph the outdoor ambiance, architecture and statuary there. I have browsed the tables and booths of our city's beloved Southern Festival of Books. But, today, the view was different. Colored tents lined the periphery, and mostly young people, some of the most economically disenfranchised in our country right now, along with older compatriots, scattered about the plaza. I enjoyed the opportunity graciously granted to photograph the movement. Rock on, Folks! Power to the Little People! All 99 percent of us!
