Caryn Sullivan's Blog, page 8
April 8, 2017
Autism: Building Understanding and Helping Families Navigate
4/9/17
In the early years after my son’s autism diagnosis I prayed some person or organization would hoist autism from obscurity into public consciousness.
More than two decades later, WCCO-TV has helped answer that prayer with its Pulling Together community outreach event.
Blending fun and fundraising into what’s being hailed as an “epic event,” Pulling Together will generate funds and awareness for Fraser, Minnesota’s largest and most comprehensive provider of services for people with autism and their families.
At St. Paul’s Hidden Falls Regional Park teams will engage in a tug of war across the Mississippi River. Competitors will try to stay out of the water, just as families living with autism strive to stay afloat every day.
St. Paul will battle Minneapolis, with support from outside the metro. Pearson Candy Company will lead St. Paul teams, comprising competitors representing the St. Paul Police Department and Minnesota Wild, for example.
Central Roofing Company will lead Minneapolis teams with Minnesota Twins and Minneapolis Police Department representatives, among others.
While teams must raise at least $10,000 to compete, even those without buffed biceps can participate through online donations.
As a Fraser board member and parent of a Fraser client, I’m delighted, excited, and grateful.
Operating from six locations around the Twin Cities (and with a Woodbury location in the works) Fraser offers thousands of families a one-stop shop that didn’t exist when my family was looking for answers and strategies years ago.
Services run the gamut, from neuropsychology to applied behavioral analysis; speech, art, and music therapy; medication management; help with activities of daily living; counseling for trauma or anxiety; and more.
Whether clients participate in preschool, day programs, friendship groups, or career planning, the goal is to tease out strengths and develop effective strategies.
Early diagnosis and intervention are vital. But for the generation of parents who rode the wave from 1-in-10,000 to 1-in-68 with autism, the needs change, though the worry remains.
Parents of adults with autism aren’t scheduling speech therapy sessions. They’re wondering how their 6-foot child in diapers will transition from the public school system to a more unprotected world; how to shield their vulnerable daughter against pregnancy; and whether anyone will give their son who memorizes baseball trivia an interview, much less a job.
If we’re good planners we’re pondering who will care for our loved ones when we are gone. We’re grappling with how – and if — our guys can be taxpayers instead of lifelong recipients of taxpayer-supported services.
Each family defines success in its own way. I’m watching adult children become artists, employees, and volunteers. I’m seeing relationships form with peers or family members, debunking the notion that people with autism can’t make emotional connections, as I was told decades ago. I’m watching late-bloomers find their stride.
Fraser’s funding comes from a variety of sources: grants, private insurance, and as recently reported in the Pioneer Press, complex Medicaid programs. With ever-changing regulations, and uncertainty about health care, nothing can be taken for granted.
So Fraser turns to donors to sustain its mission of ensuring Minnesota families can access services within 35 minutes or 35 miles.
It’s an ambitious mission.
With each change of leadership at both the state and federal level, each change in legislation or regulation, CEO Diane Cross and her team must assess how they can best meet an array of needs for thousands of clients and, if needed, retool.
Businesses deal with uncertainty as a matter or course. People pivot daily to deal with the unexpected. We change jobs and partners. Life goes on.
But an autism diagnosis is complicated. Autism endures because, as my son reminds me, autism is not cancer. It’s who he is.
And so the challenge for parents is to find the best resources for our loved ones to leverage skills, confront barriers, and push for society to accept that regardless of social, economic or ethnic background -and developmental challenges — we all have hopes, dreams, gifts, and limitations.
As his only parent, I count on the Fraser safety net that stretches from the leadership team to the direct support professionals to support my son in the apartment where he lives among neighbors who may be oblivious that adults with autism are even there.
Parents like me use our resources, gumption, talents, and our remaining energy to make the world a bit better for both loved ones and strangers for whom many days feel like a tug of war.
I want to believe that awareness breeds acceptance and generosity; that awareness motivates a parent with a gnawing concern to schedule an evaluation; that awareness leads to charitable giving, which, in turn, enables Fraser to hire more staff to cut waiting times for diagnosis.
So during this month, when autism is in the spotlight, I’ll shine a light on four sides of this Rubik’s cube in a series of columns. Armed with information and insight, I hope readers will be a bit more compassionate toward the exhausted mom in the checkout line whose kid needs more than a good dose of discipline. And maybe even choose a St. Paul team to support on June 10.
To learn more about the event and how you can participate click here:
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March 31, 2017
Aligning Life and Legacy
3/31/17
We’re barely three months into a new year but the losses are accumulating at an unsettling rate. And I’m not talking about the Final Four.
Since January more than a handful of people I care about – my family included – have lost loved ones, several to the pernicious disease known as dementia or Alzheimer’s.
I’m shaking my head at a phenomenon that is one of the rare certainties in life. We’re all gonna go some day. Yet, we’re rarely prepared, be it for the sudden death of a cardiac patient or the slow demise of a cancer or dementia patient.
The emotions that accompany one’s passing are universal, but present themselves as more of an ala carte than a fixed menu. Tears, regrets, laugh-out-loud memories, remorse – or a confusing amalgamation thereof.
Perhaps there’s a silver lining in this cloud. The end of a life offers an opportunity to pause and reflect on how we are living our lives.
When the time comes for others to say farewell, what emotions will mark their hearts? Gratitude? Anger? Joy?
What will the obit say?
She worked like a dog.
She danced to her heart’s content.
She shared her wit, a glass of wine, an extra meal.
She was a shameless opportunist.
For those inclined to self-analysis, here’s my question:
Are you living the legacy you want to leave?
If yes, kudos to you!
If not, why not?
If not, what steps must you take to align your life with your legacy?
If not, when will you reconfigure your route?
You only get one shot at this gig.
The post Aligning Life and Legacy appeared first on Caryn M Sullivan - Living a Life of Resilience.
Are You Living The Legacy You Want to Leave?
3/31/17
We’re barely three months into a new year but the losses are accumulating at an unsettling rate.
Since January more than a handful of people I care about – my family included – have lost loved ones, several to the pernicious disease known as dementia or Alzheimer’s.
I’m shaking my head at a phenomenon that is one of the rare certainties in life. We’re all gonna go some day. Yet, we’re rarely prepared, be it for the sudden death of a cardiac patient or the slow demise of a cancer or dementia patient.
The emotions that accompany one’s passing are universal, but present themselves as more of an ala carte than a fixed menu. Tears, regrets, laugh-out-loud memories, remorse – or a confusing amalgamation thereof.
Perhaps there’s a silver lining in this cloud. The end of a life offers an opportunity to pause and reflect on how we are living our lives.
When the time comes for others to say farewell, what emotions will mark their hearts? Gratitude? Anger? Joy?
What will the obit say?
She worked like a dog.
She danced to her heart’s content.
She shared her wit, a glass of wine, an extra meal.
She was a shameless opportunist.
For those inclined to self-analysis, here’s my question:
Are you living the legacy you want to leave?
If yes, kudos to you!
If not, why not?
If not, what steps must you take to align your life with your legacy?
If not, when will you reconfigure your route?
You only get one shot at this gig.
The post Are You Living The Legacy You Want to Leave? appeared first on Caryn M Sullivan - Living a Life of Resilience.
March 26, 2017
Colon Cancer and Courage
3/26/17
It takes courage to stand in front of thousands and be the butt of your own jokes, particularly when the jokes are, literally, about your rear end.
But the tagline for author and professional speaker Brenda Elsagher says it all: She offers courageous conversations on humor, health and happiness.
Elsagher has enjoyed two successful careers. In the first, she worked one-on-one with clients, cutting and coloring their hair. She loved her work and was passionate about teaching cancer patients to restyle their hair and apply makeup after they lost their eyelashes and brows.
Then, at age 39, a doctor discovered a golf ball-sized tumor in her rectum. The tumor had to go so she could live.
Told she needed to have a permanent colostomy, she thought, “That bag thing? I thought old men had that.” She learned that ”babies are born needing ostomies; old people have them; beautiful young men and women are walking around with ostomies” (skin-colored pouches in which what goes in comes out.)
Her treatment was arduous, involving more than her bowel. The Burnsville resident underwent a series of surgeries. Her recovery was so painful she could barely hold her toddlers.
Worried her son and daughter would require therapy because she didn’t hold them much, she wrote her first and most personal book, “If the Battle is Over Why Am I Still in Uniform?” and discovered both her talent for storytelling – and her second career. Four books followed, filled with stories of others who have shared her experiences.
She decided to tackle her bucket list. She lost a lot of weight. Silencing the voices that suggested she wasn’t smart enough, she enrolled in Metropolitan State University.
Today, speaking through the lens of both patient and survivor, she inspires thousands, especially health care professionals.
Bolstered by emerging science on the benefits of humor, she is constantly searching for funny moments and incorporating them into her motivational messages.
March is colon cancer awareness month. Though it ranks second in cancer deaths, an interesting phenomenon is occurring. Typically found in men and women over 50, colon cancer is on the decline in older adults but on the rise in younger people. The reason is unclear.
Minnesotans might spot Elsagher in PSAs making her pitch. She’s known as the funny lady who talks about bowels. She’s okay with that.
Incredulous when people avoid the diagnostic test because it’s unpleasant, she says, “Get a colonoscopy. Yes, it’s icky. But it is short-lived. And it could save your life. And, by the way, life can be icky, too, but we still have to go for it.”
Bowel disease exists on a continuum, manageable for some, debilitating for others. Some can manage it with medication. In extreme cases “it can feel like they are pooping out razor blades,” Elsagher says. The response is to stop eating to avoid the pain. Often the sufferers end up having the surgery they’re desperate to avoid.
Bladder cancer patients have their bladders removed and breast cancer patients have their breasts removed, she says. “Colon cancer patients can have their colons removed and discover the result is both life changing and life enhancing.”
Elsagher notes there’s been a change in the conversation about the disease and the treatment options since her diagnosis more than 20 years ago. “We’ve come a long way with our understanding and acceptance of colon cancer. No one used to talk about it. Now it’s a lunchtime conversation, though not yet a dinner conversation.”
Elsagher is undeterred by uncomfortable topics. Her book, “It’s In the Bag and Under the Covers” is a collection of stories about sex, intimacy, and caregiving, as told by people with ostomies and their caregivers.
Publishing the book required a candid conversation with her husband, though. A native of Egypt (where, she notes, women don’t speak publicly about shaving their legs), he grappled with sharing something so private. So they did a cost benefit analysis: Will this help others more than it will hurt us?
Feedback from readers and audience members, who thank her for addressing an awkward, but important, topic, has validated the decision to address what goes on under the covers.
Elsagher is not just funny; she’s grateful and reflective. She got to see her son grow up and marry and her daughter attend college. She’s still living with her husband in the same house, surrounded by friends and family, creating memories every day.
“Don’t wait for a crisis to tell the people in your life that you love them. Do it daily. Don’t be afraid to try new things. Don’t think you’re not smart enough or small enough. If you don’t try you will always wonder.”
As to the surgery, she says, “A bag didn’t stop anything. But I admit that having a rectum is very convenient. If you can still wipe your butt, appreciate it.”
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March 21, 2017
“My Dreams Have Come True”
A delightful story about dreams, gumption, and smiles
3/21/17
Caryn’s note: I’m honored to share a guest blog post by author Ann Aubitz. This post originally appeared on blog.arcsvaluevillage.org. At such a young age Katlyn has so much gumption. Her attitude gives me pause – and makes me smile! How about you? For Katlyn’s story, as told through her mother’s eyes (and, I suspect, maybe a few tears), read on…
“Mom, my dreams have all come true.” This is the statement my daughter Katlyn made after being a model for Arc’s Value Village Halloween Boo-tique. I still get emotional when I think about it because I never thought I would hear those words from her. When Katlyn was born 21 years ago with Down syndrome there was uncertainty. Now it has been replaced with hope for the future.
“I am an author, a model, an actor, and I have been on TV.”
She thought for a moment. “What should I do now?”
“Well honey you get to make new dreams,” I said, wiping the tears from my eyes.
Katlyn has led an amazing life and it just keeps getting better.
In addition to being a model for Arc’s Value Village, she was crowned 2016 Miss Amazing Queen in the Jr. Miss Division and had the opportunity to compete at the national level in Chicago.
Minnesota Miss Amazing provides opportunities for girls and women with disabilities to build confidence and self-esteem in a supportive environment. Katlyn has truly enjoyed her time as the reigning Miss Amazing Queen.
In 2015, Katlyn and I co-authored a book called Katlyn Conquers the World, which she followed up in 2016 with her own children’s book titled I am Princess Katlyn. Most recently we put together a compilation of stories for our book called The Many Faces of Down Syndrome: Stories of Inspiration, Hope, and Laughter. Katlyn authored her own story in the book, in which she talks about who her favorite people are in the whole world. Melissa McCarthy and Kate McKinnon made the list. Also, she would eat chicken every day if she could.
As part of the Bloomington, Minnesota Public Schools transition program BTC Katlyn worked at Arc’s Value Village at the Bloomington location and was a valuable part of their team.
In addition to modeling for Arc for the Boo-tique, Katlyn also modeled for back-to-school digital ads. Arc created a video of Katlyn which was viewed over 5000 times. Katlyn would run into my office daily to see how many people saw her smiling face.
She was also the featured model for the Merry Thrift-mas ads on social media and will be modeling in Arc’s upcoming World Down Syndrome Awareness Day Style Show this Saturday, March 25th.
Katelyn will be graduating this June from Bloomington Transition Center and will be a member of the drama troupe at the Interact Center for Visual and Performing Arts. Interact gives artists with disabilities opportunities for a career in a creative field of their choice.
Katlyn keeps coming up with new dreams to achieve, which is the great thing about her dreams. There is never a shortage.
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March 18, 2017
Tossing the Pain Into the Inferno
3/12/17
Camp Widow. Roughly 48 hours of 160 women and a few men sharing, connecting, remembering, rebooting at the Tampa Marriott Waterside Hotel…. I’ll leave Tampa with so many thoughts and feelings about this experience.
I don’t actively count the months, much less the days. But the ribbon on my Camp Widow lanyard reminded me it’s been seven years and three months since I got “the call.”
That surreal call in which I learned that, in the cessation of a heartbeat, my ‘W’ changed from wife to widow, catapulting me into the group no one wants to join – what I, in a snarky moment, termed “the freakin’ widows club.”
In the aftermath of my loss I’d found my strength in solidarity with my friend Ann, whose husband John’s heart stopped 76 days after my Ted’s failed him. Others in my world have since joined the club, none as close as Ann, though. We will forever be bound by the uncanny coincidence of our losses.
I discovered Camp Widow on the Internet last fall. It’s a gathering for men and women whose life partners have died. Camps, not conferences, offer a unique blend of support, education, and camaraderie, brought together three times per year by founder Michele Neff Hernandez and volunteers who share a common bond. It’s a lifeline and a safe zone for campers ranging from grateful veterans who tout the life-saving connections to the deer-in-the-headlights newbies, some as young as my oldest kids.
I reached out to Hernandez about being a presenter, thinking my roadmap to resilience might resonate with the group. So my role at Camp Widow was principally presenter, marginally participant.
I try to focus on today and tomorrow. But being in that milieu, yesterday was everywhere. Being surrounded by so many who shared my loss was unsettling. Suddenly, unexpectedly, I was raw again.
We’re all students and teachers in life if we choose to be. I went to Tampa expecting to be a teacher. But I’ll leave Tampa with my student cap on.
For as I shared my “Three Steps to Better” presentation, I had a moment of reckoning.
For seven years, as I’ve worked hard to leave the baggage behind, I’ve been lugging a carry-on bag that has gotten no lighter.
And it’s making me weary.
In my writing and speaking I offer an explanation for how I came to title my memoir “Bitter or Better.” I’ve given the talk many times. But in Tampa, something unexpected. Speaking to a group of fellow travelers, familiar, but unwelcome, emotions settled in as I explained how, faced with adversity, we can choose to be bitter or better.
The emotions weren’t the usual miscreants: sadness, regret, or loneliness.
They were the destructive emotions that strain my efforts to move forward: the entrenched anger and hurt, carelessly inflicted by a few people who are likely oblivious of what they did. People who said hurtful things or turned their backs on my children and me when we were untethered.
My mind gets it. Unexpected trauma ignites an inferno. People do, say, crazy things in crazy times. Yet, that intellectual recognition offers meager salve for the wounds. Nor does it alter this truth: that people appear strong and resilient is no excuse for thoughtless or heartless behavior.
So as I reflect on my time at camp, the takeaway is simple and terrifying: there will be no apologies from those who so wounded me, no effort on their part to reboot relationships. To truly walk the talk – my choice to be “better” – it is time for me to jettison that piece of carry-on luggage.
So as I sit outside this lovely Tampa hotel, wind blowing, portable heaters humming, I’ve reluctantly accepted there is only one course of action that is congruent with choosing better. I’ll put pen to paper and let the nameless perpetrators know how they wounded not only me but, worse yet, my children. I’ll let the words flow and, likely, the tears.
And then, because I have neither the courage nor the will to send the letters, I’ll create my own inferno. I’ll toss the past into the fire. And, God willing, I’ll move on without the carry-on bag.
If you’d like to learn more about my journey to “better” click here to procure a signed copy of Bitter or Better.
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March 8, 2017
Fearless to Shameless
Lessons from a Leash-Less Walk
3/8/17
Sharing wisdom gleaned from experience is not only an exercise in humility, it is one of the most meaningful ways to give to others. This week I’m delighted to share a guest blog post from Lee Woodruff in which she does just that, in a blog she titled “Fearless to Shameless.”
~~~~
“Leash your dog!” The command bellowed across the golf course where a willowy man in a puff jacket brought a giant black beast of a dog to heel. Disoriented, my head snapped up as our two little dogs ran excitedly forward. The man struck a baronial pose in the distance. His canine’s head was almost chest level.
“Do you hear me?” The frigid January wind off the Long Island sound distorted his words, but the angry, impatient tone was unmistakable.
My friend and I had been deep in conversation. This routine golf course walk was a chance to let our small dogs run free while getting some exercise. She’d just returned from her three-hour weekly round trip to visit her 92 year-old mother in the hospital. The caregiver had called an hour before. Her Mom seemed weaker. Could she come back down? I was bucking her up as she prepared to get back in the car for the return trip.
“I said, leash your damned dog! What’s wrong with you?” Fierce now. My friend is losing her hearing and she struggled to understand what was unfolding, even with my prompting. Her Shitzu bounded innocently toward the bear-dog for a sniff as he rose to all fours in a guarding-the-gates-of-hell stance. Clearly we weren’t responding fast enough. The man shifted position, his body language belligerent.
“Call the dog,” I urged her quickly. “Start running. The guy wants you to leash him.” She hesitated, still struggling to process the situation. I’d like to mention that we live in a small suburb of New York, where people are mostly collegial. We townsfolk try to follow the basic rules of civility, mostly offer neighbors the benefit of the doubt. His cruel tone felt like calculated sport.
“What don’t you f-ing understand about the words leash… your… dog?” His voice dripped with fury. Indignant. How had things gone so quickly from a friendly golf course stroll to verbal grenades on enemy territory? And if this dude’s beast was such a menace, why wasn’t he removing himself from the equation? He was already at the edge of the course, clearly headed toward the road.
I’m not going to do myself any favors if I continue relaying the dialogue. Suffice it to say I got my Irish up, met fire with fire, and when he finally tugged his dog off the course, still hurling swear words, my friend and I looked at one another incredulously, veins coursing with gladiator-level adrenaline. The feeling was less than victorious. I wondered if he felt any better. How could he?
We’re living in a pivotal moment. And no, I’m not talking politics here, although I’m sure it will be interpreted as such. Certainly, the past political season has added lighter fluid to an already burning fire. In what feels like a short span of time, we’ve moved from promoting fearlessness to accepting shamelessness. We’re fully embracing a no-apology, take no prisoners, winner take all era. It’s totally cool to be shameless.
Fearlessness has a place in our lives; in the pursuit of dreams and goals. It’s more personal. Learning to be fearless is to confront what scares you or holds you back from reaching your potential. Teaching our children to overcome their fears gives them the tools to grow and improve, to question things, to not just accept the status quo. Shameless is an altogether different thing, a more corrosive, destructive force when unchecked. Shamelessness is a giant middle finger in the sky, without the consequences; a flagrant disregard for others and for the rules society constructs to co-exist and thrive.
There are plenty of examples of rewarding shameless behavior, from Kim Kardashian’s first sex tape to doping/lying sports figures and their unapologetic comebacks. The current low bar has been linked to everything from reality TV, evaporation of organized religion, dissolution of journalistic standards and the creation of the social media temple of self-worship. Forgive me, you’re already glazing over.
What matters is how we move forward. How do we use the moments in our every day lives to put a stake in the ground? How do we sprinkle in more civility, remind ourselves that sometimes we need to consider the other fellow first?
That pompous ass on the golf course who started at decibel ten? I let him wind me up. I fought outrage with outrage. But what if I had gone all Ghandi on him, led with a little kindness, instead of responding with my own entitlement? I’m just as guilty as the rest of the shameless, nattering crowd. I’m one more middle-aged, angry white woman joining the firefight, starting with the assumption that I’m right.
The fearless me needed to put the shameless me in check. What if we’d gotten closer to that man, instead of bitch slapping back into the wind? What if we’d met his crazy with some calm wisdom, and maybe even an apology. It was our dogs who were off leash, running toward his beast like beef jerky treats. Maybe he was truly frightened about some sort of attack. We didn’t know his story.
I’m ready to start somewhere, determined to build in a little more benefit of the doubt, to lead with kindness in hopes that it rebounds and reverberates a little. It’s certainly harder to be a pompous ass when someone defaults to concern. Well, let’s just say it’s a little harder to justify your position of pompous ass-iness.
In a world where everyone seems to be yelling at one another, I’m going to whisper more. I’ll take a few breaths before making an assumption, before getting right up in someone’s grill. I won’t be 100% successful. We all have our moments. But I’m willing to give it a shot.
For more of Lee’s wit and wisdom visit http://leewoodruff.com
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March 3, 2017
A 3D Gift Spawns Opportunities – and Smiles
3/3/17
High school students ecstatic? How often do you hear that? But such was the response of students at Benilde-St. Margaret’s School (BSM) after several alumni delivered an unusual gift in late February – a $10,000 3D printer.
BSM is a co-ed college prep school located outside of Minneapolis. One of its crown jewels is its STEM (science, technology, engineering and math) program. Hundreds of students in the 1400-member student body take part in it. So a state-of-the-art 3D printer will be a tremendous asset to young people whose minds lean toward engineering, bio-medical or even artistic pursuits.
And from the faculty perspective, the technology will be an amazing tool for teaching students how to think, how to learn, and how to be curious, says Kirsten Hoogenakker, science teacher and department chair.
Private schools like BSM are constantly on the hunt for funds to support programs and capital campaigns. The money is integral to their longevity.
Students benefit from the cash gifts, of course. But cash gifts don’t offer engineering, bio-medical and art students the hands-on gratification that Stacker 3D’s gift affords.
Let me paint a picture, for I’ve grappled with the terminology. The new Stacker S2 3D printer is a 155-pound tool on wheels that can be used to create objects, in contrast to traditional printers that generate paper copies. Operated by software, the printer can produce an endless number of items. It can make replacement parts for machinery, including the 3D printer itself. It can build sprinkler heads, fly reels, pencil holders, cartoon characters and so much more.
And that’s the beauty of having one in a school. The 3-dimensional printer takes education beyond books. Students have an opportunity to get in the trenches, to be exposed to the nuts and bolts of the work they might want to pursue as a career.
Imagination has no limits. Acknowledging it sounds a little farfetched, Hoogenakker envisions using the printer to create body parts so students who are considering medical careers can work with materials made of the same density that surgeons cut into. Not farfetched to me. Isn’t it that kind of outside the box thinking that turns students into next-generation scientists and leaders?
The printer has appeal beyond the sciences. Hoogenakker says art students will be able to bring images that exist in their minds into three-dimensional creations like sculptures.
The students are buzzing about the gift, Hoogenakker says. They can print with a variety of different materials – and with more than one material at a time. BSM students already work collaboratively. The printer is a prime vehicle for combining ideas and bringing them to life with technology.
Three years ago Norston Fontaine started Stacker 3D with the goal of offering a printer that fell somewhere between the existing options: inexpensive hobby-grade printers that produced low-quality results and expensive, high-end commercial printers with quality output. Fontaine funded the company with a Kickstarter campaign that attracted the Benilde-St. Margaret’s alumni who became first investors then benefactors.
Since its inception Stacker has sold more than 150 hundred printers. It has a new model on the market now, the S2, and a new Kickstarter campaign to fund it.
Serendipity brought Russ Schumer and Fontaine together. Schumer’s company, Crown Extrusions, was in a crisis. Composite gears on a vital aluminum press had burned out. Told it would take two weeks to obtain replacement parts, Schumer did some sleuthing and discovered Stacker.
Fontaine offered an unexpected solution. Using the 3D printer he made replacement parts for the aluminum press and delivered them the next day. Crown Extrusions dodged a bullet and Stacker attracted not just Schumer – but his high school buddies – as investors.
Donating the printer to BSM was Mark Ryan’s idea. Together, he, Schumer, John Cich, Eric Turnquist, and Miriam Olson purchased the printer and made the gift. They were members of the BSM class of 1975 – the first co-ed class to graduate after two schools merged in 1974.
Though their careers have taken them in different directions – business, manufacturing, and law enforcement – the bond they forged in St. Louis Park so many years ago remains. And now they are sharing in a cutting-edge business and philanthropic venture.
Who knows where the gift might lead, what benefits might flow from it? Ryan says Stacker might get some great feedback from really smart kids who will be working with the product. As the business evolves, Stacker may be able to offer internships or summer jobs to the students. And Hoogenakker says BMS students will have a competitive edge when applying to colleges or for internships.
For the time being, the gift produced a lot of smiles on the part of both donors and recipients. Ryan says that when they dropped off the printer it was like watching the kids playing with a bunch of puppies. And who doesn’t love puppies?
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February 27, 2017
At Spare Key it’s all About the Bounce
2/26/17
When resilience is at the core of an organization’s mission it’s only fitting that its executive director exude tenacity, creativity, and energy. And that his favorite saying (greeted with trepidation and enthusiasm by his staff), is, “I have an idea.”
That man is Erich Mische, who, for the past five years has led Spare Key, a nonprofit that operates under the mantra, “No matter the illness. No matter the injury. No matter the income. Spare Key helps families bounce and not break.”
Like many nonprofits, Spare Key was spawned from a family’s grief and gratitude. In 1993, Derian Keech was born with significant health issues to parents who relied upon two incomes to pay their mortgage.
Derian spent much of his short life in the hospital. Friends, family, co-workers, and strangers pitched in financially so Stacy Keech could step away from her job and be her son’s caregiver.
When Derian died, Stacy and her husband, Robb, started Spare Key so other families could have the support that had sustained them.
Twenty years later the nonprofit has provided thousands of mortgage grants and rent payments to people with critically ill or seriously injured children in Minnesota, North Dakota, South Dakota, and Wisconsin.
Mische spent decades working in government and politics, as Norm Coleman’s chief of staff in St. Paul and Washington D.C. His ability to network and solve problems is an asset in a densely populated nonprofit world.
His greatest challenge is echoed by his peers in the nonprofit arena. How does one grab the attention, the hearts, and the pocketbooks of donors when the landscape is changing?
Larger funders are moving away from supporting basic human needs such as food, clothing and housing and are investing in social justice and inequities. “In order for small nonprofits to survive and thrive in today’s environment you need to change the funding paradigm,” Mische says.
So with three full-time and one part-time staff members, Mische doggedly pursues opportunities.
Take this year’s annual gala. He pulled out the stops to invite the new Minnesota Gophers head football coach, P.J. Fleck. Seizing on the coach’s trademark “Row the Boat” mantra, Mische appeared in a video – in his hot tub, oar in hand – and spoke directly to the coach about how his mantra matched Spare Key’s mission.
It worked.
Fleck agreed to make opening remarks at the sold-out event at the Minneapolis Depot.
Constantly asking donors for money can be exhausting, humiliating, and demoralizing. So Mische is looking for other ways to support the nonprofit. He, his board and staff are discerning what Spare Key must do to be more relevant. How can they sustain the support, much of which flows from banks and realtors?
“We aren’t afraid to take risks, think outside the box – or fail. You can’t be timid. If the goal is to help families in crisis, you’d better not be timid because if you are you’re not using all the tools,” he says.
Last December the self-described introvert accepted a donor’s invitation to spend several days with a group of thought leaders at Richard Branson’s Caribbean estate on Necker Island.
Mische wanted to make a lasting impact on Branson. He did his research and discovered Branson abhors neckties and will cut them off men who sport them. So Mische packed a tie, wore it to a dinner in which all attendees were clad in white linen shirts and slacks, and asked Bronson to cut it off.
Branson did. And the philanthropist whom Mische describes as a “whirling dervish of a guy with white hair and a big smile” later sent Mische a photograph memorializing the moment.
The surroundings were fabulous but Mische’s focus was on how the experience could benefit Spare Key. In meetings, lectures, and social gatherings participants discussed how they could break down barriers to saving, helping and changing the lives of more people.
They discussed exponential technologies, the arts and philanthropy, new trends and approaches. A concept called benefit corporations captured Mische’s interest. It involves converting a nonprofit into a benefit corporation that sells products or services to fund the nonprofit’s mission, minimizing the reliance on donors.
Mische left the island with a clear idea of how a benefit corporation could work for Spare Key but he’s fleshing out the details. “It’s going to be a game changer for a lot of small nonprofits,” he says.
His big-picture vision of Spare Key is a one-stop shop for families that would enable them to focus on the child’s care and recovery: the little things that become huge in a crisis – gas for the car, heat for the home – as well as financial and emotional counseling.
Mische could certainly work at a larger organization. Why Spare Key? I asked. It’s about the personal connections. Were he at the helm of a much larger organization he would only be dealing with the big donors. And because he can interact so directly with families and donors he feels a strong personal connection to all of it.
Personal connection, indeed. I’ve met and written about many passionate nonprofit leaders. But Mische is the only executive among them who says, “Short of setting myself on fire, there’s not much I wouldn’t do for Spare Key.”
The post At Spare Key it’s all About the Bounce appeared first on Caryn M Sullivan - Living a Life of Resilience.
February 23, 2017
Feed the Kids, Feed Your Soul
2/23/17
I’m making a pledge for 2017 and I’m looking for others to join me. At least once per month I’m going to volunteer to help others. Last month I donated blood. Yesterday I helped to put food in bags for children who eat nothing – or baked clay – because in some countries (like Haiti and Uganda) there’s often nothing for kids to eat.
Imagine. Nothing. To. Eat.
Operating on donations and thousands of volunteer hands Feed My Starving Children has been nourishing children in more than 70 challenged communities for the past 20 years. The premise is simple. With sustenance, kids can sleep and play and learn. Kids can be kids with hope of a future. To be candid, it won’t be the future American children can expect and enjoy. But it can be a better future than they would have without food.
Though Feed My Starving Children has a location just miles from my home in the southeast metro of the Twin Cities I drove to an office building north of Minneapolis to do the same work I could have done much closer to home.
There’s a method to my madness. I’m a self-employed writer and speaker. I have no staff. I work from home – or wherever I happen to be sitting with my Mac. I’m an empty nester. Even the dog moved out last August.
I’m not part of a team. There’s no company Christmas party or summer picnic for people like me.
When I heard that WCCO Radio host John Williams was assembling a team to compete in the first-ever Feed My Starving Children business challenge I signed up. I feel like I’m a WCCO stepchild. I have a weekly segment with host Jordana Green on Thursday nights in which we talk about the latest topic of my blog, Gifts, Gratitude & Gumption.
Jordana was in for the two-hour stint. So I signed up, too, as did WCCO staffers, listeners, an orthopedic doc, and Sue Zellickson, another regular contributor on Jordana’s show.
In my memoir, Bitter or Better, I write about three steps to living the choice to be “better.” They’re simple, but not easy. They involve looking up, reaching out, and stepping forward.
One of the steps on my roadmap to resilience is finding a way to feel connected. People who feel connected with others live longer, happier lives.
That’s my goal. A long, healthy, happy life, marked by “choosing better.”
People who reach out and do things for others also live more joyful lives. Why? Because when you focus on someone other than yourself you gain perspective that can tip the scales from “bitter” to “better.”
Feed My Starving Children masterfully sets the stage for the need and the solution. Through a powerful video volunteers learn that kids in Haiti eat baked clay before bedtime so they can fend off hunger pangs and get some sleep. It puts everything into perspective.
Hate winter? Feeling lonely? Struggling with medical issues?
Well you’re not eating baked clay, are you? You’re more likely drinking from a coffee mug made of that same clay. Because someone had the brilliant idea of using the clay to make mugs. The mugs could be sold to support the nonprofit’s work.
I left the site with a full heart and two new coffee mugs.
What about you? Will you take the 12-month challenge and do something for others each month? What are your ideas?
Let’s help each other to help each other.
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