I don't need to be invited to write.
But it helps.
Last week, I was invited to attend a writing workshop by Sandra Root-Elledge, associate director of program development for the Wyoming Institute for Disabilities (WIND) at the University of Wyoming. Sandy and I serve together on the UPLIFT board. So I took Friday off and drove over the pass ("blowing snow, icy roads, turn off cruise control") to Laramie. Springtime in the Rockies.
On campus, a collegial group gathered to talk -- and write -- about their children with disabilities. One of us had physical disabilities, and she was accompanied by a scribe. Not all of us were parents -- several of the attendees work with populations with special needs and have many stories to tell.
Workshop leader was Kathy Roberson who, in 2008, started a writers' group for family caregivers at the Boggs Center in New Jersey. She has master's degrees in creative writing and social work. She also has a 20-year-old daughter with developmental disabilities. Kathy as in town with her husband, a fisheries biologist, who was attending a conference. She connected with Sandy at WIND and a workshop was created.
It is difficult to write well and honestly about those closest to you. Way back in the last century, I pitched several publishers and agents about my manuscript about our family's struggles with our son who has ADHD. I received little encouragement but many comments. "Dig deeper," one editor told me. "I don't want to dig any deeper," I told myself, and kept sending out the manuscript. Looking at it now, I realize that the critique was correct. There was lots of good stuff on the page. Nifty sentences, some insights, a bit of humor. But it was heady, my story as told by some person at a remove from my story -- and that person was me.
I've been able to publish some of the book's chapters, often after a lot of revising. One of the essays will appear this September in the anthology Easy to Love by Hard to Raise. That has prompted me to go back and look at the rest of the manuscript and dig deeper. That is at least partly what writing is about -- digging until the writer hits the mother lode.
Kathy Roberson's writers' group in New Jersey has bred some amazing poems and essays and stories. She shared some of them with us last Friday at the WIND workshop. Kathy uses a number of prompts as writing exercises. One was "Write about an article of clothing that holds a distinct memory or meaning." She tells the caregivers that they can follow the prompt or not. Most do, and come up with some amazing writing about quirky bathing suits or Navy blue Converse sneakers or a baby outfit with this script across the chest: "Thank Heaven for Little Boys." As you read this short memoir, you can't help thinking about the challenges as this little boy with disabilities grows up.
To read the prompts and some of the finished work, go to "Writing Our Journey: Poems and Essays by Family Caregivers."
On Friday, Kathy gave us this prompt: "Write about the word ambivalence."
I had to think about this one. Usually I just jump into the writing. Ambivalence, I think, is a term that many of us face daily. I love my children but they drive me to distraction. My wife and I have been a caregiving team for what seems like forever -- we just want to be a couple again. I try to be supportive with my daughter as she wrestles with homework and now tests for her G.E.D. At the same time I'm wondering why she has so much trouble with work that is so easy. I know the answer -- learning disabilities and ADD and a school career filled with failures. Still, I can't get over the fact that neither of my children graduated from high school. My son is on the lifetime plan at a community college. I'm not sure that my daughter will succeed in college or even get there.
This is the time of year when the graduation announcements arrive. The other day we received one from my nephew in Florida graduating from University of North Florida. I'm proud of him but his notice reminds me that I won't be attending a high school graduation this fall. I recall saying this the day my daughter was born: "When she graduates from high school, I'll be 60." Well, I'm 60 and she's not graduating. She'll have her G.E.D. But no diploma.
Where does my ambivalence lie? All over the damn place. I'll try to sum it up: "Enough already with the damn graduation announcements." That's what I wrote about.
Other workshop participants have children with severe developmental disabilities. These children and young adults cannot speak or take care of themselves. They have autism or Down Syndrome or very rare disorders of the brain and spine. They live in group homes and spend their days at the Ark, one of the best centers for the developmentally disabled in the region.
Faced with this, I remember one of my mother's favorite sayings: "Count your blessings, Michael." My mother had to count her blessings often -- she had nine of them, she said, with me the oldest. This didn't count my father, who would be the tenth blessing if you're trying to keep up. My mother was wise but I rarely counted what was good and dwelled instead on the negative. That was part of my depression, this inner turmoil. This is more curse than blessing, but I may not have become a writer without it.
Ambivalence is life. To see life in black and white is to be blind to the colors and shades of gray.
The poems and essays by the workshop participants were sad and funny. Filled with ambivalence.
Kathy left us with one of her poems. It's entitled "Ambivalent Living." It's very personal and does a terrific job of summing up the title.
Ambivalent Living
Kathy Roberson
It's October and the fluttering,
garish, dazzling display of color
defies the unmistakable scent of
melancholy settling; this time of
change resists easy conclusions.
Inside, on the warm couch, her long,
adolescent limbs curl along side me
while she contentedly sucks that one
calloused thumb; fear and faith in
the far future vie for voice, rise in
my throat and are swallowed just
as swiftly as I stand to plan the
fleeting details of our day.
A drawing called Love: a child
poised in mid-air, and a woman,
both arms stretched forward, ready
to catch, enfold, or else hold still,
risk release into open sky. I've mused
since about which way the story was
supposed to go and see now, in this
season of uncertainty, how either way
the name remains the same.
Showing posts with label people with disabilities. Show all posts
Showing posts with label people with disabilities. Show all posts
Kevin the Climber, Part II
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| Vedauwoo photo from climbing site vedauwoo.org |
I watch my son Kevin as he clambers up the tumbledown boulder field of Vedauwoo in southeastern Wyoming’s Laramie Range during the summer of 1996. There is something natural about this 11-year-old’s ease with the billion-year-old rock, the way he picks his way through narrow passageways and finds just the right finger hold to get up and over a house-sized chunk of Precambrian granite. You could say that since he is a third-generation Coloradan, born within the magnetic fields of dozens of mountain ranges, he was destined to climb rocks. He could just have easily been born to yodel country-western songs or snowboard naked or speculate in Aspen real estate or a thousand-and-one things Westerners seem compelled to do. Kevin prefers rocks.
Where Kevin sees a ladder to the sky, I see a rocky barrier. I will climb until I get to the top or get stymied by a “radical vertical,” whichever comes first. The rocks seem to beckon Kevin, to welcome him in ways foreign to me. I have suggested that he should take rope-climbing classes, learn the traditional roots of the sport. “Why would I want to do that?” he asks, as if it never occurred to him to place something as foreign as rope between him and the mountain.
It’s possible his rock worship might date back to our Druidic roots, our Celtic ancestors’ reciprocal relationship with the natural world. It may just be that he likes free-climbing rocks the same way I loved surfing during my teen years on Florida’s Atlantic coast. The Druid Surfer spawns the Druid Rockhead. If we could jump back in time a million years or so, we could both be engaged in our separate passions right on this very spot. He could be climbing Mesozoic rocks, still bursting from the earth’s crust, and I could be surfing the bitchin’ waves of the ancient inland sea.
Because Kevin has Attention Deficit Hyperactivity Disorder, his love for rocks has physiological roots. To concentrate is everything for this hyperactive kid. He can’t do it for extended periods of time unless he is under the influence of Ritalin, a drug that helps him control an aggressive impulsiveness, one of the telltale signs of ADHD. Right now, as he climbs toward the sharp blue Wyoming sky, the Ritalin, a central nervous system stimulant, is working on my son’s brain stem arousal system causing it to not be aroused. Why is that? Don’t look for any help from the medical texts. Says thePhysicians’ Desk Reference: There is no “specific evidence which clearly establishes the mechanism whereby Ritalin produces its mental and behavioral effects on children, nor conclusive evidence regarding how these effects relate to the condition of the central nervous system.”
Each time we climb, Kevin eventually disappears, leaving me to my own shortcomings as a climber. I don’t mind. Rocks offer him solace and solitude. They do not call him names. They do not mistake his energetic aura for anything else. They are rocks and that is why we came here and why he will continue to climb long after I am sidelined by the aches of an aging Baby Boomer body.
Alone on the rocks, I get a chance to conduct my favorite climbing activity: sitting on a perch, watching the dark patterns that drifting cumulus make on the blue-green landscape. Across the narrow valley, members of a rope-climbing class from University of Wyoming take turns rappeling down a cliff. In the far distance on Sherman Hill, a line of trucks crawl along I-80 and a freight train crosses “The Gangplank” of the Laramie Range — a granite sheet that is a centuries-old thoroughfare for Cheyenne and Arapaho, pioneers, railroaders, vacationers and truckers, those transients that have been both boon and curse to the West.
I luxuriate in the feel of the cool breeze on my face, the tart taste of an apple on a July afternoon. Hawks ride Vedauwoo’s complex air currents. A wonderful dream, to fly like a hawk. Some time within the next hour Kevin will shout my name and I will look up to see him waving from a pinnacle, his lanky form etched against the blue sky. “Come on up!” he will yell, and I will return his wave and shake my head.
He goes some places where I cannot follow.
Cross-posted from easytolovebut blog. Way back when, this piece appeared in a longer and slightly different form in Montana’s now-defunct Northern Lights magazine.
Kevin the Climber, Part I: An ADHD Memoir
I’ve been blogging from Wyoming since 2005, but only a portion of my posts focused on our family’s experiences with ADD, ADHD, OCD and mental health challenges. This is fitting in a way because my blog is named hummingbirdminds after a description by Internet hypertext pioneer Ted Nelson. He said in Wired Magazine that people with ADHD have “hummingbird minds.” I always liked that. My blog, like my mind, flits from subject to subject.
Kevin the Climber, Part I
Our son Kevin was diagnosed with ADHD at 5. I guess you could say it was a pretty severe case because it was evident from the time he started walking at 9 months – maybe even earlier. Walking was too tame for Kevin. He was a runner and a climber.
He climbed out of his crib. He climbed out of his playpen. He climbed 100-foot trees. And that was all before he turned 2. Later he climbed cliffs and mountains and buildings. He was more interested in climbing on the top of playground swing sets than he was swinging on them. He liked to shinny up the metal bars that formed the arch that held the swings. Like an inchworm, he would creep along the poles until he was right over the heads of those kids below on the swings. "Hi down there," he would say with a laugh. Some kids greeted him; others just stared. The parents had various reactions. Most seemed concerned for their own children, afraid that Kevin could slip and fall right on them. A falling body builds a tremendous velocity in a very short span of time. Broken bones could result. Concussions and worse.
One day I was at the playground with Kevin while my wife Chris worked. Kevin’s favorite park was three blocks from the university’s married student housing complex where we lived while I worked on my writing and my graduate degree at Colorado State University. When we arrived at the park, Kevin made a beeline for the swing set and climbed up the curve of the rusty red iron pole. Within seconds he was perched 20 feet up, poised over the head of a blonde five-year-old girl wearing a Minnie Mouse T-shirt. Her mother looked worried. I didn’t have to be a member of the Psychic Hotline to understand the look of concern that creased that woman’s face. She imagined Kevin losing his grip and falling through space for a collision with her daughter. I imagined a similar scene. She was thinking: “Why doesn't his father say something to this menace of a boy.” She pushed her daughter with both hands as she peered up at Kevin. What follows is the conversation as best as I can remember it:
-- Your boy sure likes to climb.
-- Yes he does.
-- He seems pretty good at it.
-- He is.
-- It's a long way up.
-- He likes heights. He climbs mountains.
-- Has he ever fallen?
-- From Mount Everest. But just that once.
Ha ha. I sort of regretted saying it. I just wanted to wound this mother slightly, to get back at her for thinking I might be a lousy father. I felt like it sometimes, that I was a terrible parent for letting my son climb on something that obviously was meant to swing on not climb on.
I felt guilty around these good parents. They all seemed so much more comfortable with their roles than I did with mine. They acted as if parenting is some snug undergarment that never slipped or became wedged in vulnerable bodily cavities. I used to think that parenting would be innate, that I wouldn’t have to learn a series of new dance steps to dance the parent waltz. I wonder if they had all received some sort of parenting gene from kind and loving parents that I did not.
But there was something else: their kids were classified as normal and mine was not. And I was constantly trying to deal with that fact.
Look for Kevin Climber, Part II, in upcoming posts. Also, find this post on the Easy to Love but Hard to Raise blog after Feb.22.
Kevin the Climber, Part I
Our son Kevin was diagnosed with ADHD at 5. I guess you could say it was a pretty severe case because it was evident from the time he started walking at 9 months – maybe even earlier. Walking was too tame for Kevin. He was a runner and a climber.
He climbed out of his crib. He climbed out of his playpen. He climbed 100-foot trees. And that was all before he turned 2. Later he climbed cliffs and mountains and buildings. He was more interested in climbing on the top of playground swing sets than he was swinging on them. He liked to shinny up the metal bars that formed the arch that held the swings. Like an inchworm, he would creep along the poles until he was right over the heads of those kids below on the swings. "Hi down there," he would say with a laugh. Some kids greeted him; others just stared. The parents had various reactions. Most seemed concerned for their own children, afraid that Kevin could slip and fall right on them. A falling body builds a tremendous velocity in a very short span of time. Broken bones could result. Concussions and worse.
One day I was at the playground with Kevin while my wife Chris worked. Kevin’s favorite park was three blocks from the university’s married student housing complex where we lived while I worked on my writing and my graduate degree at Colorado State University. When we arrived at the park, Kevin made a beeline for the swing set and climbed up the curve of the rusty red iron pole. Within seconds he was perched 20 feet up, poised over the head of a blonde five-year-old girl wearing a Minnie Mouse T-shirt. Her mother looked worried. I didn’t have to be a member of the Psychic Hotline to understand the look of concern that creased that woman’s face. She imagined Kevin losing his grip and falling through space for a collision with her daughter. I imagined a similar scene. She was thinking: “Why doesn't his father say something to this menace of a boy.” She pushed her daughter with both hands as she peered up at Kevin. What follows is the conversation as best as I can remember it:
-- Your boy sure likes to climb.
-- Yes he does.
-- He seems pretty good at it.
-- He is.
-- It's a long way up.
-- He likes heights. He climbs mountains.
-- Has he ever fallen?
-- From Mount Everest. But just that once.
Ha ha. I sort of regretted saying it. I just wanted to wound this mother slightly, to get back at her for thinking I might be a lousy father. I felt like it sometimes, that I was a terrible parent for letting my son climb on something that obviously was meant to swing on not climb on.
I felt guilty around these good parents. They all seemed so much more comfortable with their roles than I did with mine. They acted as if parenting is some snug undergarment that never slipped or became wedged in vulnerable bodily cavities. I used to think that parenting would be innate, that I wouldn’t have to learn a series of new dance steps to dance the parent waltz. I wonder if they had all received some sort of parenting gene from kind and loving parents that I did not.
But there was something else: their kids were classified as normal and mine was not. And I was constantly trying to deal with that fact.
Look for Kevin Climber, Part II, in upcoming posts. Also, find this post on the Easy to Love but Hard to Raise blog after Feb.22.
UPLIFT presents Rodger McDaniel with public service award
Photos by Mindy Dahl
Wyoming Tribune-Eagle education reporter Josh Mitchell wrote about UPLIFT’s 20th anniversary celebration in Wednesday’s edition.
The celebration was held Tuesday evening in the Cole Elementary school gym. One of my fellow UPLIFT board members, Brenda Ducharme, teaches at the school.
UPLIFT, the Wyoming affiliate of Federation of Families for Children’s Mental Health, presented Rodger McDaniel (shown in lower left in photo with UPLIFT Director Peggy Nickell) with its public service award. McDaniel is the outgoing director of the Wyoming Department of Health’s Mental Health and Substance Abuse Services Division. He will be missed.
I served with Rodger in the early 1990s on the first board of Laramie County Habitat for Humanity. I moved on to other volunteer roles and a few years later, Rodger and his family were in Nicaragua directing that country’s Habitat projects. He returned to his law practice, became an ordained minister and was eventually tapped by Gov. Dave Freudenthal for public service. His retirement was announced last week.
Rodger’s been crucial in bringing vision to a state that struggles with some rotten mental health and drug abuse statistics. Crisis centers – even in the Capital City – are few and far between, as are clinicians. The division’s Medicaid Waiver program for children and teens have helped pay for residential treatment and, even more importantly, aftercare when the child returns home.
Here’s hoping that Rodger and his colleagues have put us on a course that even 2010-style regressive politics can’t change. Wyoming’s new “Code of the West” may be fine for ropin’ and brandin’, but it doesn’t help curtail alarming teen suicide statistics and the state’s shortage of quality children's mental health treatment.
Josh interviewed me for the Nov. 17 story. My two cents worth:
Mike Shay is an UPLIFT board member and both of his children received help from the organization.I’d send you to the WTE site to read the rest, but it’s not on there.
UPLIFT outreach coordinators attend school meetings with parents, Shay noted. The organization helps navigate parents through the complex system and connects families with different services, Shay added.
“UPLIFT”s been crucial in Wyoming,” Shay said.
As I've said here before, my son struggled with ADHD and my daughter has mental health issues. Both were helped by the incredible UPLIFT staff. We need these professionals to navigate school and government and treatment centers. They serve as guides to us confused, stressed-out parents.
You can find out more about UPLIFT at http://www.upliftwy.org/
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