Caryn Sullivan's Blog, page 10

How Art Made Jimmy Reagan ‘Better’

December 8, 2016

It happened so quickly.  Jimmy Reagan was playful and happy. Then everything changed. He became sickly, withdrawn, and uncommunicative around his second birthday. One of five children, his challenges became endless and all encompassing for his mother, Peg Schneeman Reagan, and his father, Brian.

Jimmy’s autism diagnosis was shocking. But his health issues were perplexing. Why couldn’t he tolerate so many foods? Why couldn’t he put on weight? What was going on inside his body?

By the time he was a teenager Jimmy’s health problems were so severe his brother Jack worried he was going to die. His parents continued to search for answers and solutions. It took more than 20 years of searching before the answer arrived.

Three years ago a physician at the University of Minnesota diagnosed Jimmy (now 23) with mast cell disease, explaining it had been there for years. An orphan disease, it can only be managed by diet and medications and requires constant surveillance.

The mast cell diagnosis followed an earlier – and amazing – discovery. In 2009 a teacher asked a question that proved life changing for Jimmy and his family. Would he be interested in art? Indeed, he would be.

In the past seven years Jimmy has developed an extensive portfolio of work using various media. Intrigued by Vincent Van Gogh, Jimmy began painting “tick marks” of various colors. After he viewed a Picasso exhibit he shifted from tick marks to brush strokes, using bright colors to paint people, landscapes, and animals. He continues to work with canvas and pastels but also enjoys carving and cutting foam.

Jimmy brings a visual clarity to his work that is absent in other areas of his life, his brother Jack says. Peg concurs. “It’s really astounding. When he works on a painting and puts in a color you know it’s part of his plan.” Moreover, his art offers a glimpse into emotions not easily shared. Peg can always tell when he’s not feeling well because his work changes – or stops.

While she still oversees Jimmy’s health issues, Peg now manages the enterprise they named Through Jimmy’s Eyes. She’s sold some of his original canvases for thousands of dollars. Jimmy’s art adorns walls all over the United States.

Peg has taken it a step further, though. She transforms her son’s images into women’s handbags and scarves, men’s ties and pocket squares, onesies for babies, as well as notecards and coloring pages. Working from their home in Mendota Heights, Minnesota, Peg markets, packages, and sells the goods. One of her sons works on the website. Her other children model the apparel.

The Reagans believe in giving back. “When you’re helping other people sometimes it comes back and helps you,” Peg says. They’ve donated Jimmy’s art to local schools and nonprofits. Most recently, Through Jimmy’s Eyes’ accessories were featured at the University of Minnesota FashionFest. Almost all of the family participated in the annual event that raised more than $300,000 for the University of Minnesota Masonic Children’s Hospital. 

FashionFest guests were fascinated by Jimmy’s work. Ron Johnson, a former Minnesota Gopher and pro football wide receiver, was a FashionFest model. Drawn in by Jimmy’s bow ties, he arranged to wear one in the fashion show. An on air commentator, he plans to wear it during  an upcoming Minnesota Vikings football game.

Jimmy is not a social creature so Peg didn’t expect him to linger at FashionFest. But as the evening wore on he remained with his family and buddy Thomas, sporting a new suit, signature bow tie, and a smile. Natalie Bushaw, FashionFest chair, says, “What I love about that family is the level of support for what Jimmy is doing.”

It’s not been easy. Jimmy’s medical and developmental challenges have weighed on the family. “For our kids there’s been a lot of collateral damage,” Peg says. “The art is a joyful part for us. It helps us to remove some of the sadness because of how sick he is.” She is proud of her children for demonstrating how you can help someone who has had a difficult time.

Jimmy will always require 24/7 care to remain healthy, safe, and engaged. In addition to his parents and siblings he has several young men who offer care and companionship.

But his art illustrates he is much more than what he cannot do. “We consider him an artist who lives with complex autism,” Peg says. Many who purchase his art are unaware of his condition.  And his autism offers him a unique buffer. He can revel in the accolades – and ignore any negative reactions. It’s a freedom most artists most artists don’t enjoy, Peg says.

The Internet has provided great exposure. Jimmy has a large following of accomplished artists. He’s received exciting invitations. His paintings have been displayed in Germany and Italy and will be showcased in Hong Kong next March.

Jimmy’s art has given Peg something else. “There are so many things about Jim’s health I haven’t been able to control,” she says. “I can’t fix his disease. For me the art feels like something I have control over – especially when his disease flares up. I look at his work and it’s happy. That tells me that despite his struggles he is an innately happy, loving human being. And I take great satisfaction in that.”

Note: Peg will be selling Jimmy’s merchandise at Sunfish Cellars in Lilydale, Minnesota, December 9 from 10 to 7 p.m. and December 10 from 10 to 8 p.m. Sunfish Cellars will host a free wine tasting from 4-8 p.m. on Saturday. I’ll join Peg on Saturday from 1 to 4 to sign copies of my memoir, Bitter or Better, which features a story about Jimmy. To learn more about Jimmy’s work visit throughjimmyseyes.com.

 

A Whole Lotta Smilin’ Going On

It began with a pebble toss, so to speak. And the ripple effect was wholly unpredictable.  

Kim Hammes and Judy Sunderman have been friends since they attended high school in the town of Le Sueur, Minnesota, population 4,000. Kim, an extrovert, is a realtor with RE/MAX. Judy, an introvert, farms with her husband. Their personalities complement each perfectly. 

Several years ago Kim was an empty nester with a great career and family. But she needed more. She’d known of Kim Valentini and the nonprofit she’d started in 2003. Smile Network International provides cleft lip and cleft palate surgeries to children in countries like India, Mexico, and Haiti, where what is a routine procedure in the U.S. can be cost prohibitive.

Kim Hammes wanted to go on a mission trip. But there was a catch. The only way she, a non-medical professional, could participate in a mission was to combine it with adventure travel. A mission in Peru was on the docket. It followed a rigorous hike along the Inca Trail to Machu Picchu.

Kim doesn’t like to fly. She had never hiked. So it was a stretch.

But desire trumped fear. She mentioned the trip to Judy, who had been dealing with family health issues and needed something to look forward to. Judy loves adventure. She didn’t hesitate. She was in.

Mission participants must pay their own way and raise money to fund the surgeries. Judy was reluctant to ask for donations. But Kim had hosted fundraisers in the past. She assured her new partner that raising $5,000 would be a piece of cake. Whatever they did it just had to be fun.

On the Saturday after Thanksgiving 2013 they hosted the “funraiser” they called the Ugly Sweater Ball at the Henderson RoadHaus Event Center. They raised $16,000.

That year – and every year since – everything has been donated to an event that has grown wings. The venue, auctioneer, media, food, silent auction items, beer, and Christmas trees have all come from residents who have been drawn in by the enthusiasm of these two women.

Last Saturday night they raised more than $60,000 at the It Can’t Get Much Uglier Than This Sweater Ball. In four years the two women who wanted to do something different – to make a difference – have raised a quarter million dollars to help children in other countries.

Kim Valentini says, “Kim and Judy have participated in changing the lives of hundreds of kids by inspiring their community to take on their cause. And at the end of the day, that community has lifted up and healed children they will never meet. What is more powerful than that?”

Kim and Judy’s imagination, creativity, and work ethic are limitless. Their volunteerism has become a family and community endeavor. At least 100 people, including their extended families, contribute to the event in some manner.

Each year about a dozen locals model their sweaters in the ugly sweater fashion show. Last Saturday models ranged from a 21-year-old to 94-year-old Marion Peck. Enthusiastic guests bid thousands on the sweaters.

Most residents will only experience a mission trip vicariously, through Kim’s social media posts or through personal stories. This year Smile Network offered the opportunity to bid on a mission trip. As bids went higher and higher, one trip became two.

All because two women have inspired others to participate in their good work in whatever way they can.

What began as an event for residents of Le Sueur and Henderson (population 875) has grown to include people from St. Thomas, Mankato, Belle Plaine, and the Twin Cities. People are adjusting their family traditions to ensure they can decorate a sweater and attend the ball. Guests who reserved one VIP table plan to host two next year. Offers are rolling in to be sweater models.

Like the gift they are giving to so many, Judy and Kim wrapped up our conversation after the ball with a bow.

These communities, our families, and our friends have wrapped their hearts around this as we have. The ripple effect is going out there because we threw that first pebble. We couldn’t raise the amount that we did without all the people who paid $15 to get in, bought $5 raffle tickets and made small donations.

 People think the small donations don’t matter. They do. All those donations add up up to half of what we raised. That’s a huge message. Give what you are able. It makes a difference.

 

For Greg Rye It’s a Season of Reflection and Gratitude

Many decades ago, Greg Rye was a young college graduate with a dream of wearing a badge and carrying a gun. He imagined a life in law enforcement, be it with the FBI, Secret Service or a local police force.

He got a job as a part-time community service officer but it was short lived. On August 31, 1982, a deadly shooting occurred in the quiet community of Wayzata, Minnesota. Greg’s sergeant was killed on his 36th birthday when he responded to a domestic disturbance. Two others were wounded. The terror ended when the shooter killed himself.

Greg was deeply traumatized. He began to impute one bad actor’s behavior to others who were undeserving. Engulfed in depression and sadness he sank into “an emotional gutter.” He abandoned his career before it even got traction. And he lost his way.

He had no network to fall back on. But something unexpected happened. One after another, people entered his life and lifted him out of his sea of misery. Men and women walked with him, unlocking doors to their most prized possessions: their relationships. They saw something in him he didn’t recognize in himself.

The Chicago native became involved in politics, business, civic affairs, and philanthropy. His reputation grew – and so did his ego. His principal concern was what Greg Rye could do for Greg Rye.

For a time he delighted in seeing his name and photo in print. Then he had an epiphany. Most of the people he didn’t like were like him: selfish and egotistical. He didn’t want to be idolized in the community where so many had given him so much.

He shifted gears. Instead of just belonging to Rotary he began living its motto of service above self. In his marriage he discovered he could be committed to someone other than himself.

I met Greg in October 2015 at a breast cancer awareness breakfast. After he read my memoir, Bitter or Better, he bought dozens of copies to give to people “who needed” the messages it offers. He’s become a great ambassador and supporter. I’ve become one of many grateful friends.

Earlier this month Greg spoke at the same country club where we’d met. This time he was sharing his story before a packed audience, pulling back the curtain to reveal his foibles and challenges. He admitted that for years he had let both his ego and his drinking get out of control.

One by one he acknowledged the people who had helped him to make different choices – to give up drinking and to focus more on others and less on himself. For the better part of an hour he expressed thanks and gratitude to the people who had led him to a better life.

He shared lesson after lesson he gleaned from his buddies. All his stories were enveloped in gratitude. They’ve taught him about the value of faith, family and philanthropy; the majesty of the outdoors; the joy of raising golden retrievers; and the gratification of being a servant leader.

He spoke of embracing differences, citing his marriage. His wife is a Democrat, he is a Republican. Lisa is a member of the teachers’ union; he’s a former school board member. He is a Lutheran, she’s a Catholic. But it works.

Throughout 2016 Greg has focused on paying back and paying it forward. Drawing upon an enormous contact list (he has more than 4,000 connections on LinkedIn) he has hosted monthly social functions in which he brings together random men and women from his network. When guests leave one of his events they may have a dozen new people in their lives.

He’s collaborated with restaurants whose businesses he wants to support. The proprietors host a meal or a happy hour and Greg brings in fresh faces, new customers. The guests meet and mingle. Greg stands back to watch. “There’s nothing better than looking across a restaurant and seeing two people you introduced sharing a meal or a cup of coffee,” he says.

Greg beams with pride as he explains he has no expectations or agendas, though he does have a plan. His goal is to give away all his relationships in his lifetime. “If you don’t, they die with you. So you might as well give them away while you can.”

 

 

Taking the Plunge – A Marrow Donor’s Story

November 16, 2016

You aren’t a first responder, an emergency room physician, or an alpine rescue volunteer. But you have something that could save another’s life. Would you share it, knowing you might lose a little time and endure some discomfort?

To be precise – would you take the plunge to save a stranger?

In this, National Marrow Awareness Month, organizations like Minneapolis-based Be the Match hope you would.

Kaela Anderson was a student athlete at the University of Minnesota when she joined the Be the Match Registry at a 2012 HopeDay Festival sponsored by the University athletic department. As a competitive swimmer she was discouraged from committing to any activity that could affect her training or performance.

But Kaela felt a pull. An inner voice suggested that, rather than being a mistake, joining the registry would be a blessing. So the young woman who not only has a fear of needles, but also has a physical reaction to donating blood, said, “I’m in.”

The call came in March 2015. Kaela had been matched with an 8-year-old girl who was dying from an aggressive form of leukemia.

The former swimmer took the plunge. In June 2015 she traveled to Washington D.C., where she underwent testing to ensure she was physically qualified to donate her bone marrow.

Her eligibility confirmed, she went into the experience with high expectations and the same determination she’d applied to swimming. Failure wasn’t an option. She hoped her marrow would save the child and one day they would meet.

Donation day brought nervousness reminiscent of competition days. But with support flowing from family, friends, and co-workers, Kaela underwent the 45-minute procedure. Doctors extracted a liter of bone marrow from her hip while she slept. It was later transferred to the recipient.

The process was seamless. Kaela recovered quickly, running a 5k race 10 days after the extraction. She eagerly awaited updates about the patient whose identity and place of residence remained a mystery. A month after the transplant Kaela received encouraging news: the patient was beginning to accept Kaela’s cells and to produce healthy ones of her own. The transplant was working.

Kaela sent gifts, cards, and updates on her own recovery. But she heard nothing. In October, anxious for an update, she contacted the organization that had facilitated her donation. Days later she got another call – this one far different from the one that had set the process in motion. She was crushed to learn the child had succumbed to an infection. She hadn’t expected to become so attached to someone she never met.

Questions plagued her. What did she do wrong? Was it her fault? Kaela felt as though the piece of herself she had shared with the child had died along with her.

Kaela’s heart remains heavy over the loss. But she takes solace in knowing her gift provided hope and time to the girl and her family.

Moreover, the experience helped her to find her purpose in life. Time spent at many HopeDay Festivals helped her to realize how much being around children and families means to her. Now a member of the development team at the University of Minnesota Foundation, she raises money so that other children and families can have the best possible experience during stays at the University of Minnesota Masonic Children’s Hospital.

Though she did not donate through Be the Match, Kaela has joined its speakers bureau. Sharing her experience and insight has helped her to heal. She makes a point of encouraging athletes to join the registry. Their good health and conditioning makes them prime donors, she has learned.

Though she began her journey by helping one patient, her focus today is much broader. Now she is helping thousands of people to get involved.

Would she take the plunge again? Absolutely. As soon as another opportunity arises she will jump on it.

What about you? If the call came, would you take the plunge?

Mitch Rapp and the Killer Moustaches

 

November 10, 2016

Have you noticed an uptick in men with bristles above their lips? It’s no accident. November is also Movember. It’s a time when women tolerate their men’s stubble in the interest of raising awareness and funds for men’s health.

Men would rather think or talk about anything but the most personal aspects of their health. But inspired by the Australian-borne moustache movement, more are braving taboo topics, as well as evaluating their lifestyles.

What’s It All About?

In 2003, two mates were having a beer and conversation in Australia when they decided to bring moustaches back into style. While they were at it, they’d raise awareness about men’s health. Their movement got traction. By 2007 Movember had spread to more than 20 countries. Staches, it seems, are good conversation starters.

Since it’s inception Movember Foundation has funded more than 1,000 men’s health programs as part of a plan to connect researchers and clinicians worldwide to improve outcomes for men living with prostate and testicular cancers. Mental health and suicide have been added to the mission.

In the month of November friends and co-workers form teams, sometimes bound by a common experience or loss. Take Mitch Rapp and the Killer Moustaches, for example. The name derives from the indomitable protagonist in Minnesota author Vince Flynn’s novels. The team formed in 2011, a year after Flynn was diagnosed with Stage III prostate cancer.

Prostate cancer is the second most common cancer that afflicts men. Though many are treated successfully, 35 men die from prostate cancer every hour. Most men are diagnosed in their sixties. Flynn was just 44 when he learned that the pain he attributed to old football injuries was much more serious.

Killer Moustaches

Flynn, a St. Paul native, was going through radiation treatment when he reached out to his buddies in an email reflecting both his philanthropic nature and his good humor. Buddies and brothers responded with enthusiasm.

“Many of you have secretly yearned to grow a mustache over the years but have not done  for fear of getting a lot of crap. You now have cover. Tom Tracy has been kind enough to register a team for Movember.

 Movember is a charity devoted to raising funds and awareness for prostate cancer by having men grow a mustache during the month of November. Check out the link below and if you’re either brave or foolish enough to grow a stache, great. We will be holding a happy hour at the end of the month to see how everyone did. If a mustache is not possible (and I can think of at least one Irish friend to whom this would be a monumental challenge), then please consider a donation.”

Tom Tracy, Flynn’s best bud, took the helm and assembled a team. Before long Flynn’s buddies were spotted with bristle above their lips. A tradition was born.

In the past five years Mitch Rapp and the Killer Moustaches have raised more than $100,000. Though the participants fluctuate, the commitment and purpose are unremitting: to keep other men from dying too young.

Mitch Rapp and the Killer Moustaches is not an exclusive group, though. Dennis Gould, a charter member, says the team welcomes others, be they friends, family, or fans.

Invincible

Flynn was a tough guy with an optimistic nature. He fought his cancer bravely – but privately. That he’d lose the battle was unfathomable. His death in June 2013 came as a shock to many.

“We though he was invincible,” says Gould, adding, “Vince was my inspiration. I hope that I can pass that inspiration on to my boys.” This month Gould is growing another stache, along with two sons who shared his respect and affection for Flynn.

Mo Sistas and Mo Bros

No woman wants to grow a stache but some may want to support men’s health. So Mo Sistas host events or sign up to take “the move challenge.” Working together, more than 5 million Mo Sistas and Mo Bros have raised in excess of $700 million since 2003.

The movement continues to grow. As to the Killer Moustache Crew, one thing is clear. Unlike the staches. which will vanish at the end of the month, Flynn’s cronies will continue the tradition to honor the man whose signature line was “Keep the Faith.”

 

What’s With the Staches?

 

November 10, 2016

Have you noticed an uptick in men with bristles above their lips? It’s no accident. November is also Movember. It’s a time when women tolerate their men’s stubble in the interest of raising awareness and funds for men’s health.

Men would rather think or talk about anything but the most personal aspects of their health. But inspired by the Australian-borne moustache movement, more are braving taboo topics, as well as evaluating their lifestyles.

What’s It All About?

In 2003, two mates were having a beer and conversation in Australia when they decided to bring moustaches back into style. While they were at it, they’d raise awareness about men’s health. Their movement got traction. By 2007 Movember had spread to more than 20 countries. Staches, it seems, are good conversation starters.

Since it’s inception Movember Foundation has funded more than 1,000 men’s health programs as part of a plan to connect researchers and clinicians worldwide to improve outcomes for men living with prostate and testicular cancers. Mental health and suicide have been added to the mission.

In the month of November friends and co-workers form teams, sometimes bound by a common experience or loss. Take Mitch Rapp and the Killer Moustaches, for example. The name derives from the indomitable protagonist in Minnesota author Vince Flynn’s novels. The team formed in 2011, a year after Flynn was diagnosed with Stage III prostate cancer.

Prostate cancer is the second most common cancer that afflicts men. Though many are treated successfully, 35 men die from prostate cancer every hour. Most men are diagnosed in their sixties. Flynn was just 44 when he learned that the pain he attributed to old football injuries was much more serious.

Killer Moustaches

Flynn, a St. Paul native, was going through radiation treatment when he reached out to his buddies in an email reflecting both his philanthropic nature and his good humor. Buddies and brothers responded with enthusiasm.

“Many of you have secretly yearned to grow a mustache over the years but have not done  for fear of getting a lot of crap. You now have cover. Tom Tracy has been kind enough to register a team for Movember.

 Movember is a charity devoted to raising funds and awareness for prostate cancer by having men grow a mustache during the month of November. Check out the link below and if you’re either brave or foolish enough to grow a stache, great. We will be holding a happy hour at the end of the month to see how everyone did. If a mustache is not possible (and I can think of at least one Irish friend to whom this would be a monumental challenge), then please consider a donation.”

Tom Tracy, Flynn’s best bud, took the helm and assembled a team. Before long Flynn’s buddies were spotted with bristle above their lips. A tradition was born.

In the past five years Mitch Rapp and the Killer Moustaches have raised more than $100,000. Though the participants fluctuate, the commitment and purpose are unremitting: to keep other men from dying too young.

Mitch Rapp and the Killer Moustaches is not an exclusive group, though. Dennis Gould, a charter member, says the team welcomes others, be they friends, family, or fans.

Invincible

Flynn was a tough guy with an optimistic nature. He fought his cancer bravely – but privately. That he’d lose the battle was unfathomable. His death in June 2013 came as a shock to many.

“We though he was invincible,” says Gould, adding, “Vince was my inspiration. I hope that I can pass that inspiration on to my boys.” This month Gould is growing another stache, along with two sons who shared his respect and affection for Flynn.

Mo Sistas and Mo Bros

No woman wants to grow a stache but some may want to support men’s health. So Mo Sistas host events or sign up to take “the move challenge.” Working together, more than 5 million Mo Sistas and Mo Bros have raised in excess of $700 million since 2003.

The movement continues to grow. As to the Killer Moustache Crew, one thing is clear. Unlike the staches. which will vanish at the end of the month, Flynn’s cronies will continue the tradition to honor the man whose signature line was “Keep the Faith.”

 

A Mother’s Day Gift… Preparing For The Inevitable

As seen in the St. Paul Pioneer Press on 5/8/16

It’s such a curious fact of human nature. We are born with an expiration date. Yet, many of us live in denial, disregard, or even defiance of it, often neglecting end-of-life planning. Half of us will die without a will.

The death of Minnesota’s beloved man in purple has brought the issue to the forefront. We’re learning about the repercussions of not preparing for the inevitable. With Prince’s wealth estimated in the hundreds of millions, a huge percentage of his earnings will go to the government to pay estate taxes. Since he left no spouse or children, millions from his estate will pass to his sister and half-siblings. Was that his intent? We’ll never know for sure.

This is a teaching moment for those inclined to pay attention.

I learned about the importance of planning for the inevitable when, in 2009, I became a charter member of what I call “the freakin’ widows club.”

Though I’d survived cancer and my husband battled heart disease, we’d danced around a conversation we knew we should have. When his heart failed him we’d only talked about having ”the talk.” I was left with memories of him saying, “I’m worth more dead than alive.” With no safe deposit box or file containing important documents it was an arduous task to get my financial affairs in order.

It took months to assemble the pieces. I tracked down passwords, visited banks, the courthouse and more. Eventually, I confirmed that my jokester of a spouse had taken the financial planning for his wife and children seriously.

Wiser now, I have dotted every “i” and crossed every “t” in my own affairs. I’m on a mission to encourage others to have “the talk,” to plan for the expiration date. I hound my siblings and my kids about whether they have adequate life insurance, guardians for the little ones, a plan in case disability or illness renders them unemployable, and a will.

To make the end of my life seamless, I’ve created a box of love. It’s a gift to myself. And it’s a gift to my loved ones. For it’s as important to be organized as it is to have a plan.

My box holds my will, a list of passwords, the names of my banker and financial advisor, the deed to the house, titles to the cars and my insurance policies.

It includes trust documents and guardianship papers to ensure my son with autism will be cared for during his lifetime.

It includes the map with my burial plot. There will be no angst about cremation versus burial. It’s been decided. Documents are in the box.

My box of love also includes my living will.

For years I avoided the living will decision like I avoid mosquitoes on a Minnesota summer night. Instead of focusing on the clarity it would bring, I focused on the finality it suggested. A litany of irrational thoughts kept me from putting pen to paper.

It took a four-legged teacher for me to muster the courage to do the right thing.

Several springtimes ago our Cavalier King Charles Spaniel developed congestive heart failure. Though I’d talked to the vet about Sara’s prognosis and what to do when her heart stopped working, I hadn’t anticipated her illness would progress so quickly.

In our final hour together I cradled my 20-pound companion, incapable of uttering the words I knew I should say, for my own heart was breaking. Moreover, I was overwhelmed by the responsibility of ending another’s life, even if it was a dog.

In the days that followed Sara’s death the unbearable weight of my decision to let her go compounded my grief. Resolved my loved ones would never have to make such a wrenching decision on my behalf, I put pen to paper at last.

Today, my living will rests among my other important documents in my box of love.

Not all end-of-life decisions are so dramatic. Yet, by making them while we are capable of doing so we can prevent conflict among family members. Having a plan in place enables us to live unfettered by nagging thoughts about loose ends. It offers the gratification that flows from a loving act.

We all have prized possessions, regardless of their monetary value. It’s worth talking about them. Who should inherit mom’s wedding ring, grandma’s recipes, dad’s old fishing boat, or the Vikings season tickets?

What about the lake home? Whether it is a rustic structure or a palatial getaway, the issue remains the same. What will happen to it when the owners pass away?

Single people need to plan, too. Who will have power of attorney over financial and medical decisions? Who will inherit the home, the car and the pet?

What about blended families or stepfamilies? Prince’s sister and half siblings are entitled to inherit equally. It’s important to understand the law and to ensure that one’s intent is made clear.

When we confront the unpleasant we position ourselves to more fully enjoy life. Whether one has millions of dollars and a vault filled with unpublished music or a simple abode and a pile of debt, preparing for the end game is an invaluable gift. So the question is, are you prepared?

What are your thoughts? Do you have any hesitations about preparing for the inevitable? Share your comments below. 

The post A Mother’s Day Gift… Preparing For The Inevitable appeared first on Caryn M Sullivan.

A Small Raise for Caregivers

As seen in the St. Paul Pioneer Press on 4/24/16

In the old days people with disabilities lived in institutions or the family home. But the institutions fell out of favor. Today, many advocate helping people with disabilities and older adults to live as independently as possible, to become part of the fabric of society instead of hovering on the fringe.

Individuals who receive both funding and support are moving from the family home to apartments or group homes. They are training for and seeking employment, volunteering, and attending church.

But they cannot do it alone.

Enter direct support professionals. In Minnesota, DSPs work with more than 100,000 people with disabilities and older adults in their homes and in day programs. They also provide critical respite care.

DSPs help my adult son with autism to live in an apartment. Men and women employed by Fraser assist him with housekeeping and cooking. They administer his medication, take him shopping, and to the library. The goal is to optimize his independence.

He also works with a DSP who I consider a life coach. Tof is the sixth person to hold the position in 18 months. Tof has made a big impact on my 24-year-old. He’s helping him to navigate the bus system and to volunteer at a homeless shelter. He’s teaching him how to trim his beard and select new eyeglasses.

I’m holding my breath, for the two men have formed a bond. And staff changes are very difficult for my guy.

DSPs also staff group homes, where four to six individuals share space and life. Pam Gonnella’s daughter Sarah is one of them. Sarah suffered a brain injury when she was 5 years old. Now 33, she requires constant care.

Sarah lives with five other adults in a Mendota Heights group home. Most residents require wheelchairs; only one can speak; and two have feeding tubes. Consequently, caregivers change diapers and assist with feeding, dressing, and grooming.

That’s a lot of responsibility for people whose starting wage is just over $10 per hour, Pam Gonnella says, particularly when they operate with a skeleton staff. With three staff on duty the residents may be able to venture into the community with a companion. With just two (the current number) they tend to be homebound, as staff have their hands full.

The state determines how much private providers can pay DSPs. Though inflation rose 21 percent between 2006 and 2015, provider rates only rose 10.5 percent. Two years ago the state approved a pay increase. But providers and families argue it was inadequate.

Starting wages for DSPs average $10.20 and increase to an average of $11.87 over time. In contrast, in 2014, the median pay for retail workers was nearly $10.50 per hour.

The wages are insufficient for many DSP staff to live on. So they work several jobs. They accept promotions to supervisory roles that remove them from the direct care to which they were attracted. Or they quit.

The revolving door is stressful for clients (who often require consistency) and for providers. Training requirements make it impossible for new hires to step in immediately. So shifts remain unstaffed or staff take additional shifts.

Kelsey Nyline has been a program manager for Fraser’s supportive living program for two years. She explained that licensing mandates that staff receive 30 hours of training within 60 days. Training includes CPR/First Aid, de-escalation, positive supports, person-centered training, client plans, and job shadowing. New employee training costs the organization nearly $5,000. That’s a lot of training time and a lot of money to invest if employees don’t stick around.

Supply and demand is working against the organizations that support our most needy and vulnerable. With a reported 8,700 job openings for DSPs, the flashing vacancy sign is prompting both angst and advocacy.

Best Life Alliance is a nonpartisan coalition of more than 100 providers, parents, professionals and individuals who require home- and community-based services. Pam Gonnella is one of its co-founders. “There are people with so many different types of disabilities,” she says. “They all need assistance and that’s what we are trying to provide as best we can.”

One day this month, hundreds of Alliance members journeyed to the state Capitol. Lines of people in wheelchairs waited for elevators so they could deliver a message to legislators: direct support professionals need another raise. Five percent would translate into roughly fifty cents per hour per employee and would cost the state $95 million.

The staffing shortage will impact more than people with disabilities. Baby boomers who prefer to age at home with the help of paid caregivers may be disappointed, for they will draw from the same job pool. Yet, the workforce is not expected to grow over the next 15 years. So who will fill the jobs?

Gonnella worries about what might happen if wages aren’t increased. “Waiting another year will mean a whole year of worrying about the staffing at the group homes. I don’t want something bad to happen to get people to stand up and take notice.”

With quality and consistent support people like my son and Gonnella’s daughter can live away from home and be active members of the community. But that requires caregivers to be stakeholders, not placeholders.

To legislators and policymakers in whose hands this issue rests, I ask, how much would you expect the people who cared for you or your loved ones to be paid?

What are your thoughts? Respond in the comments section below. 

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What’s Your Magic Mojo?

Drive-by shootings. Playground skirmishes between politicians. The Dow up. The Dow down.

We humans have a limited capacity for negative news. That’s why I’ve launched Magic Mojo – a forum for sharing good news…stories about people stepping forward to help others or just doing something that brings a smile to others’ faces.

It seemed fitting that I begin by returning to the source of the blog’s name – my son Jack. Jack is one of the most important teachers I’ve ever had. He has taught me many things in the past 24 years – how to be more compassionate and patient, less judgmental and snarky.

He’s done something even more significant, though. Eleven years ago he saved his younger sister’s life.

Flash back to 2005. What notable events occurred that year? Condoleezza Rice became the first African American woman to serve as secretary of state.  YouTube launched! NHL Hockey was cancelled due to a labor dispute. And Prince Charles popped the question to Camilla Parker Bowles.

All of that is a blur to me. For in January 2005 my daughter, on the eve of her 11th birthday, was diagnosed with a rare blood disorder called PNH.

PNH. Those three letters prompted both nightmares and insomnia.I knew even less about PNH than I’d known about autism when Jack was diagnosed in 1993. But in both instances I spotted life-changing news when I heard it.

In short order we learned Julia’s options were terrifying. She could take medication, stop playing hockey, and live in fear of a deadly blood clot. Her life expectancy – well I can’t even go there.

The second choice was to have a bone marrow transplant, a treatment only a sobering percentage of patients survived, many with significant side effects.

I got the tutorial on BMTs, learning that a sibling is the best candidate to be a bone marrow donor. I took both kids to the hospital to see if Jack was a match for Julia. Afterwards, Jack looked at Julia and asked, “So Julia…did they give you my Mojo yet?”

Julia replied as any annoyed younger sister would, explaining they’d only drawn his blood. And besides, that’s not what mojo means.

Four months later, Jack did give Julia his Mojo. Capital M Mojo.

Because his Mojo saved Julia’s life.

As their Aunt Linda said, “Many people search their whole lives for their purpose. How great for Jack that he found his at such a young age.” Purpose. Mojo. Same message, right?

By now I hope you’ve paused to reflect on the question I posed in the title – what’s your Magic Mojo? Do you know? If you do, are you willing to share?

If you are humble or just unsure, perhaps you’d rather answer a different question. Who has a great story to share on the Magic Mojo blog? Who has a story that will bring a smile to others’ faces?

 

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Autism: Grief, Gratitude and Gifts

Have you noticed that blue is the new pink? It’s Autism Awareness Month, and following the lead of breast cancer advocates, autism advocates are bluing it up to highlight a condition that is near to my heart.

Ten years ago I began writing about autism and the challenges it presented for my son and our family. I had one objective: to raise awareness and improve the quality of Jack’s life by doing so.

Early on I felt like a soloist in a choir. These days I feel like one in a growing choir comprising sopranos, altos, tenors and basses. We’re not all singing the same tune. But our voices are being heard.

Whereas there was once a dearth of information there now is a wealth of it. My Twitter feed pops with posts from other parents, professionals and people with autism – all weighing in from their respective vantage points.

If our society hasn’t mastered awareness we certainly have made a dent in it. I’m continually learning more about a complicated condition. Like an armadillo who burrows through tunnels, then emerges into the sunlight, I’ve found my way to greater understanding about the condition and my response to it.

I’ve likely experienced something Dr. Pauline Boss terms “ambiguous loss.” Ambiguous loss occurs when a major life experience creates a void. Unlike death, it doesn’t leave a definite mark on the calendar. Rather, it infiltrates the soul, creating sadness and longing and anger and uncertainty.

I now recognize how the ambiguity inherent in autism took me to my knees two decades ago. As a concrete-thinking, problem-solving woman, I was desperate for facts, for a prognosis. Yet they eluded me. The ambiguity untethered me.

Clarity arrived, to a great extent, in tandem with an uptick in Jack’s self-awareness and self-expression. As he became better able to identify his stressors, limitations, and desires, I was better able to understand him. From there I’ve been able to form a picture of what his life is likely to look like and to plan accordingly.

As my understanding has grown, my anxiety and sadness have ceded to contentment and pride. Writing and speaking about my experience has helped me to make peace with my ambiguous loss.

I hope that by sharing my insights I can help others to do the same. In that vein, I offer my wish list, my gratitude list and my joy list.

There are so many things I wish I’d done differently. I wish I’d realized I was a mom, not a carpenter with a tool belt. My son was not someone with a problem to be fixed.

I wish I’d understood autism was not a “dream thief” but an explanation for how Jack’s brain works.

I wish I’d understood the consequences of pressuring him to change certain behaviors. While “stimming” in public (flapping his hands) may embarrass me, it comforts him. I suspect that scolding him for a harmless behavior because it looks odd to others eroded a limited supply of self-esteem.

I wish I’d been less myopic; that I’d appreciated that autism is but one of many challenges people grapple with in life. I was not the only one whose life went in an unexpected direction.

I wish I’d taken a rifle approach instead of a shotgun approach. It’s impossible to evaluate the efficacy of any one strategy if you’re shooting in multiple directions simultaneously.

I wish I’d made more time for my husband, my other children, my family, and my girlfriends. Tomorrow is never guaranteed.

I wish I’d worked harder to find help instead of hoarding the responsibilities or foisting them on my family.

I wish I’d understood the correlation between stress and health.

Time has shifted my perspective. Wistfulness is ceding to gratitude. Gratitude is such a better state of mind.

I’m grateful I’ve found a new perch from which I focus on the blessings, not the disappointments.

I’m grateful for the teachers who recognized and nurtured Jack’s spirit and sense of humor.

I’m grateful for the professionals who patiently work with him to develop his independent living skills. They surely do not do it for the pay.

I’m grateful for the family and friends who have indulged my rollercoaster ride, for I would have been unbearably lonely without them.

As I’ve focused more on gratitude than grief, I’ve discovered that gratitude and joy are great partners. Delight is such a great antidote for despair.

I delight in Jack’s honesty.

I delight in the way he hounds his sister-in-law to send daily photos of his nieces.

I delight in the way he is taking charge of his life, relying less upon people and more on the systems and strategies we’ve developed for him.

I delight in the way he is mastering social media to communicate with an expanding network of people, sending emails with funny videos to share with a chuckle.

I delight in the fact he feels emotions deeply and expresses them often.

I delight in the fact that he tells me what he needs and respects the advice I offer.

Most of all, I delight in his generous spirit. For 11 years ago he made a selfless gift to his younger sister. With her life hanging in the balance, Jack donated the bone marrow – his “magic mojo” – that eradicated her deadly blood disease. He demonstrated that, regardless of our challenges, we all have gifts to share.

 

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