North Dakota Nice: #SayYESS

One of the many reasons it’s great to be a North Dakotan is knowing that you live in a community that cares about you. Introducing YESS (Youth Empowering Social Status) – a brand-new organization that brings together young people with and without disabilities to build peer relationships and make sure no one is left behind.

YESS was founded by Vicki Laraway of the Dakota Center for Independent Living in Bismarck, and had its first full board meeting in January 2019. Board President Erin Pasley kindly offered to give us a little insight on what the community is doing to #sayYESS:

Tell us about YESS.

YESS is for people ages 14 – 24 with and without disabilities. For myself as the president, I know this is a need from my best friend, who has Down Syndrome. The public high schools do a fantastic job providing peer-to-peer programs that partner people with and without disabilities in the classroom (they even have inclusive sports). After high school, however, there aren’t really any peer-to-peer opportunities. YESS aims to fulfill this need for inclusion after high school by getting kids involved at an earlier age to give them community connections for a lifetime.

This is incredibly important to continue a supportive community environment outside of school, and helps youth be an active voice in the community and a positive force. It also helps youth know that they can do anything that they set their mind to. Similar to the Dakota Center for Independent Living – our founder, who are constantly involved with us and empower us to reach for the skies – if you have a goal, we will help you reach it!

I personally became a part of this group as I was diagnosed with Fibromyalgia. While others in our group have mental health disabilities, cerebral palsy, spinal cord injury, traumatic brain injury, etc. I have found support from all of them even though our disabilities are very different. They have taught me how to handle accessibility issues I face and we all together counsel each other on daily difficulties.

You just had your first meeting, and you’re already busy. Tell us what you have going on.

We are getting ready for our first two events: a mocktail mixer (March 23) and a conference (June 20). We have also spoken with multiple organizations and schools, including Burleigh County Public Health, Legacy High School, and Century High School.

Planning for our MockTail Mixer has been a lot of fun! It will be our very first event. We will have live music, mocktail drinks, popcorn, board games, visiting with others, and board games! It is March 23 at the Hillside Community Complex in Bismarck from 6:00 – 9:00 pm. We will also be a part of local conferences as vendors sharing our information, including Light It Up Blue (an Autism Awareness event).

What are you hoping to achieve in 2019?

With 2019 being our first year, we aim at having five or more organizations give talks to our board to help us grow as people serving those with disabilities, create a video explaining accessibility issues in the community, attend conferences in North Dakota, host our own conference (which is in the works), continue hosting fun inclusive events, connect with local lawmakers and attend legislative events, and create a community of youth that is supportive and fun.

Over the next five years, we hope to establish a yearly conference, continue hosting inclusive events, encourage independence in the community, and be a voice for youth with disabilities in legislature. Another piece we will always do is encouraging our members to be open about their disabilities and educate the community on them!

Tell us about your board of directors.

Five out of six of us have a disability. We all are unique! I (Erin Pasley, Board President) am working on achieving my bachelor’s degree from University of Mary in Speech Language Pathology and next year begin their master’s program.  Alyda Blazek (Vice President), who does not have a disability, is a Special Education Major and has a passion for serving others.  Andrea Frohlich (Secretary) is a consumer of DCIL and is a strong member of our team, especially with planning our conference in June.  Bruce Klootwyk (Treasurer) has his master’s degree from University of Mary, is a substitute teacher, and is involved with Dreams in Motion. Dayton Farley (Marketer) is involved with computers in his free time, is a consumer from DCIL, and is also involved with Dreams in Motion. Colin Wetzsteon (Member) is from Hazleton and is a huge North Dakota Bison fan.  You can also catch him skiing with Ski for Light.  We are also occasionally joined by Vicki Laraway, Renee Wetzsteon, Roxanne Romanick, and Kathy Temchack!

What can North Dakota do to support YESS?

North Dakotans can support us by sharing our name, attending our events, getting youth with and without disabilities to our event, and donating to our cause! We often forget that some people with disabilities cannot drive and struggle utilizing public transportation. Getting to our events is essential!

Is there anything else you’d like to tell us?

We exist to prove disabilities don’t define us, and to encourage others that their disabilities don’t define them, either. Our disabilities make us unique and powerful, and we can make a huge difference.

[From Amanda: The topic for the YESS June conference is “Embrace Your Disability.” If you would like to participate in any of the events, learn more, or just say hello to this amazing group, visit them on Facebook at Youth Empowering Social Status – YESS.  And if you happen to share this story, please be sure to use their official hashtag: #sayYESS !]

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Fearless vs. Fear Less: My Own Conclusions By: Kenny Salvini

Being fearless is not lacking fear. In fact, it’s the opposite.  It’s having fears and choosing to go forward despite them.  It’s a blend of persistence and courage that can be developed over time.  There are mental, emotional and spiritual muscles that can be strengthened through repetition.  They can, when flexed at the right time, catapult your life to the next level –whether it’s moving out on your own, taking a road trip or reconnecting with your true passions in life.

It’s easy to get caught up in the day-to day grind and negative self-talk that convinces you you’re going to be an utter failure on the next endeavor, all the while forgetting how far you’ve come. Living fearlessly takes a lot of many things: asking for help from family and strangers, being open to learning with and from others, getting to know your reactions to life’s challenges, and developing new habits.

At some point, you flip from fearing what ‘might’ go wrong to fearing you’ll miss out on the growth that lies just beyond. By continually pushing against your boundaries, you learn to see the world, and yourself, from a perspective you may have never considered.

This happened for me this past spring while my future wife, Claire, and I planned our wedding. Claire, a diehard Dancing with the Stars fan, sweetly, but unequivocally, demanded that we dance at our wedding.

At first, I shot it down, for fear of the inevitable embarrassment. But then I realized I didn’t want to start this chapter of our lives with the narrative that there were certain things I wouldn’t do because of my insecurities surrounding my life in a wheelchair.  All it took was a single lesson with an adaptive dance coach to help me see ways Claire and I could have fun with it.  So we had that first dance and it turned out to be the most memorable part of the entire wedding.  It really brought the house down.

So the next time life presents an opportunity to stretch one of your comfort zones, I hope you’ll take the chance to be fearless and surprise yourself.

“I Was Really Successful at Living Poorly”

You met John Yunker on our Facebook and Blog site a few years back. John took 2 trips down the Missouri River in his homemade sail boat, with his dogs; the first one with Grace(“Gracies Tale”) and the second trip with Mercy.

The sailing was not the only quest that our friend, John, has been on since his accident nearly 5 years ago. His accident involved a horse that came up out of the ditch as he was riding his motorcycle, hit John knocking him off of his bike, shattering his skull. John has had many challenges since then and the biggest one being his inability to get anyone at the Social Security Administration to acknowledge the brain injury was serious enough to effect his entire life and ability to work.

In Johns words: “I felt like a horse chasing a carrot, never getting closer to it at times. I just wanted to give up.” But, then I would say to myself, I’m not going to let them win. I had no other recourse; no continuous plan…either succeed or die. I was not ever recognized as a person with a brain injury, (there are so many different TBI’s) and mine is not physical. So, it got to be where depression took over and lead to medication and suicidal thoughts. It got so bad that I was hospitalized.   After I was released from the hospital, I was notified that my hearing to determine if I would receive benefits had been moved up to two months instead of the one year. On August 14th was my court date. The judge ruled in my favor and awarded me 18 months back pay. Now I have SSDI and I can pay my rent, electricity, buy food, phone and actually have some clothes and money to call my own. I was really successful at living poorly. I learned how to exist and make it day to day. Now I struggle with how do I spend my money. I’m not sure what to do with myself. I thank God that I had help from DCIL (Dakota Center for Independent Living).”

 

Workforce Possibilities

With it being National Disability Employment Awareness Month, here’s an idea…

We have a huge, untapped resource of great workers in our community.  These folks could be a tremendous benefit to the workforce in our community.  This is the community of people with different abilities, which others may call disabilities.

Many people on the autism spectrum are keenly aware and sensitive to the input going on around them at all times, but they can stay focused on the task at hand without skipping a beat. Honesty, bluntness, reliability and passion are very typical qualities when looking to hire new employees and these qualities are characteristic for many on the spectrum.  They spend the time, energy, and the imagination necessary to truly master what they are focused on and they stick to it even when the task becomes  difficult, frustrating or just plain ‘uncool’ to do so.

Sometimes it takes a small amount of patience to learn and to understand the world of autism, but you will always be the one who gains from this relationship. You can’t put a price tag on the amazing qualities of these individuals.

In a world where we deal every day with dishonesty, bullying, and a low moral compass, I find the qualities of these people on the autism spectrum, very refreshing. If you give them a chance to share themselves with you, you can watch how they may cause your business to prosper.

And this is just one of the many groups of people with different abilities that seek employment in our community. Being inclusive and diverse in your employee base could help your business to grow.  Win/win.

OCTOBER – National Disability Employment Awareness Month

Person's abilitiesNDEAM

National Disability Employment Awareness Month (NDEAM) is a national campaign held in October that raises awareness about employment issues for disabled people, and celebrates the many and varied contributions of America’s workers with disabilities.

NDEAM’s roots go back to 1945, when Congress enacted a law declaring the first week in October each year “National Employ the Physically Handicapped Week.” In 1962, the word “physically” was removed to acknowledge the employment needs and contributions of individuals with all types of disabilities. In 1988, Congress expanded the week to a month and changed the name to “National Disability Employment Awareness Month.”

The Presidential Proclamation of 2015 states: “America is at its strongest when we harness the talents and celebrate the distinct gifts of all our people. This October, as we observe the 70th anniversary of National Disability Employment Awareness Month, let us pay tribute to all who fought for better laws, demanded better treatment, and overcame ignorance and indifference to make our Nation more perfect.  In their honor, and for the betterment of generations of Americans to come, let us continue the work of removing obstacles to employment so every American has the chance to develop their skills and make their unique mark on the world we share.”

During National Disability Employment Awareness Month, the National Consortium on Racial and Ethnic Fairness in the Courts recognizes the indispensable contributions people with disabilities have made and will continue to make in our economy, and we salute their efforts. Employment opportunities and legal rights should be made available to all people, regardless of disability, race, creed, color, national origin or gender.

Dana’s Story-Support and a Sunny Disposition Stimulate Recovery

June 17, 2000, started out like any other normal Saturday for Dana Guest. It was the beginning of summer break, between her junior and senior years of high school, and Dana was meeting her mom to get pictures taken for their theme park season passes.

Dana was waiting at a red light behind five other cars when she took a quick glance into her rearview mirror. She had no way of knowing that what she saw was about to change the rest of her life.

The Accident

A full-size mack truck was barreling toward her resting car at 55 miles per hour. She had nowhere to go and she knew that the truck was going to hit her.

The force of the impact pushed her car two whole football fields forward. The front wheel of the truck was in her backseat. And, even with a seatbelt and airbags, Dana’s body was forced across her car, with her head ending up near the floorboard of the passenger seat.

The accident rendered her unconscious, but she awoke on-site to a paramedic checking her vitals. Dana remembers an immense sense of calm at this moment, but it was later explained to her that this feeling was probably a result of shock from the trauma. She was aware that she couldn’t feel the paramedic checking her feet and legs, but the gravity of what that meant did not yet occur to her.

Dana was cut out of her car with the Jaws of Life and flown by helicopter to a local hospital for surgery. After hours of operation, the doctors shared with Dana and her family that she had sustained a complete injury to the sixth cervical section of her spine (C6), which meant she was now quadriplegic.

Dana would never walk again. And, with modern technology, doctor’s said that the likelihood of her regaining function to her hands and arms was slim.

The driver of the truck walked away unharmed.

The Rehabilitation

Despite her diagnosis, Dana and her family were determined to do what they could to impact her prognosis. She was flown to Shriner’s Hospital for Children in Philadelphia six weeks after the accident for rehabilitation.

Dana worked hard at her recovery. Immediately following her accident, she had no feeling in her arms whatsoever. But as her physical therapy progressed, she gradually regained feeling in her triceps and focused on getting the mobility of her fingers and hands. This was a feat that would ultimately take a year to reach the point she is at today, with full function of the muscles in her hands and arms.

A Network of Support

That did not stop Dana from going back to school that fall, however. She rolled into her school that September with the rest of her friends and graduated high school with honors. She didn’t skip a beat, either. Dana made it to every dance, sports event, and school function that she was interested in and was even nominated for Homecoming Queen.

She recalls her support system being pivotal to her recovery. Her family was with her every step of the way. And her friends picked up right where they left off while she was at school. Dana’s appreciation and empathy for what her family went through during this time is remarkable. She never hesitates to share her gratitude for what it meant that they were there to support her journey.

To the Courthouse

This support came in handy when it came time to take the truck driver to court. Dana attended many of the proceedings herself. She recalls how difficult it was to listen to the prosecutor give excuse after excuse in an attempt to show how the accident could have been Dana’s fault.

From suggesting things about her car, like missing brake lights, to attacking her personally, with allegations of a seventeen-year-old drinking and driving on a Saturday morning. At one point, they even accused her of faking the severity of her injury.

This process was gut-wrenching on both Dana and her parents. But it was worth it in the end when Dana was able to receive compensation for her injury which helped her to cover the exorbitant costs of spinal cord injury treatment.

Life After the Injury

In the months and years after the injury, one of the most important things that Dana learned is that life goes on. She was certainly angry at first, “at the man who hit her. And at God.” But somewhere through all of the trials and tribulations she realized that if she carried that anger around forever, the only one who would suffer in the end would be her.

The biggest turning point toward happiness for her was in finding that forgiveness within her own heart. “I have that power, not him,” she said, remembering that moment.

And two years after the injury she found a new source of happiness, in the surprising form of a baby girl. Dana did not know if she was ever going to be able to have children and she was ecstatic when she got the news. Her daughter pushed her recovery to reaches that she never thought possible.

Today, Dana is the team manager for her daughter’s club soccer team, which is a full-time job in and of itself. But she still finds time to give back to the spinal cord injury (SCI) community. She is on the board of the Core Foundation, which helps raise funds for individuals who are financially destitute, particularly focusing on giving out therapy scholarships. And she is helping to launch a new event to bring the SCI community together called Push Nation Fest.

Becoming active in the community helped Dana to learn much more about her injury and herself. In her words, “life can be really good, and you can get to the point where you are happy again.” Joining with others and sharing your story helps to keep that hope alive.

Written by Spinal Cord Team

SpinalCord.com has been created as a resource for patients of spinal cord injuries and their families. Find everything you need to learn more about your injury, locate a doctor or treatment center, or discover financial relief to support you through this difficult time.

Theory Of Mind (Remember Other People Have Thoughts and Feelings, too)

By Kate Bringe

*“Interestingly, people with autism have difficulty comprehending when others don’t know something…” *

I am frequently baffled by how people can not know things. Don’t they want to know everything? How can they not hunger to learn? I want to know all the information, so I’m prepared. I do not want to wing it. I want to be able to make plans A through G for upcoming events. Not knowing all the available information for an event, like a holiday or trip, causes anxiety. I’m not trying to be nosy; I’m trying to compensate.

When I was around four years old, my great aunt and uncle gave me a teddy bear for Christmas. I already had a teddy bear though. His name was Teddy, and he wore blue overalls with red trim over his short, matted fur. I loved him very much. This new teddy bear was naked with long, silky fur. It was a nice bear, sure, but I already had Teddy. Why would they give me this bear when I had Teddy? I stood there, a four-year-old in her frilly Christmas dress, suddenly thrust into a conundrum for which I was unprepared.

In my mind, I’d just received this brand-new bear and maybe he was meant to replace my very best friend, Teddy. Fancy Bear’s fur was clean and fluffy; his eyes were large and shiny. Teddy, my beloved, had matted fur and smaller eyes. Would he feel dingy next to this glamourous new bear? Would he worry that I wouldn’t love him anymore? Would he be afraid of being shunted aside for this flashy upstart? What if he thought I thought he was trash now? Was my mom going to throw away my ratty, old bear? Teddy was my first and most cherished friend. This newcomer would never unseat him in my heart! My four-year-old mind couldn’t process all these feelings quickly enough. Given enough time, I may have figured out that these two bears could be friends, and everything would’ve been fine.

My gears were stuck, though. Thoughts and feelings were storming through me and everyone’s eyes were on me. I knew what response was expected of me but how could I accept this new bear when I didn’t know what was to become of Teddy? I couldn’t lose my best friend. I had to protect him! I struggled for a few moments, trying to figure out what to do or say and finally looked up, right into my great aunt’s blue eyes, and blurted, “I already have a teddy!” I hurled the new bear back into the box for emphasis.

It goes without saying my mother was mortified. My great aunt was generous in heart, but she also had very rigid expectations of proper behavior and I’d totally blown it. In their minds, I was simply not being grateful for the lovely gift of a new teddy bear. My mother immediately apologized to everyone for my outburst and excused us from the room. She took me into the kitchen and spoke sternly to me about the importance of being grateful and how nice it was of Auntie B and Uncle E to buy me this lovely bear. She told me I should graciously accept the gift and thank them for it.

I was confused, heartbroken, and humiliated. Everyone knew I was being scolded. I hadn’t intended to offend anyone, but I couldn’t express what was going on inside me either. I didn’t have the vocabulary yet to convey my thoughts and feelings. Mom marched me back into the living room and everyone turned to look at me. I felt such a deep sense of shame, but I did what was required of me and thanked them for the bear. I was angry that no one understood how I felt. I was angry that I was unable to express myself. I was angry that they’d given me a bear when I already had one. I was afraid that I was going to lose Teddy. I was afraid to open any more gifts in case they were also things I already had. It was the first time in my life that I felt like I didn’t belong. It was the first time that I considered I might be different than everyone else. It was the first time in my life that I felt like I couldn’t trust my family. I had discovered that I was blindfolded and in the social equivalent of an undocumented minefield.

For the next 33 years, I would search the house for my gifts (or I’d open them with an Xacto knife once they were wrapped) so that I’d never be surprised again. I’d know what they were, and I’d have time to prepare myself to react in a socially appropriate manner. Even when the gifts were something I wasn’t thrilled about, I would be ready and able to graciously thank the giver and make a nice comment about the gift. If there were any last-minute gifts, I always smiled and kept my gaze on the packages as I opened them so that I wouldn’t inadvertently make any inappropriate faces. Again, I would say something nice about the gift and how thoughtful the giver was. My efforts paid off. I never received a gift-related reprimand again. Knowing what I was receiving alleviated the greatest amount of anxiety I felt each time Christmas, or my birthday, came around. There was always the social piece that I struggled with, but at least I never had to worry about what I might find inside one of those brightly wrapped boxes.

Time and experience have brought intellectual understanding. I understand that no one knew what I was thinking and feeling about Teddy and the new bear. Auntie B and Uncle E were not frequent visitors and probably thought a teddy bear would be a splendid surprise for a four-year-old. At the time, it never even occurred to me that they wouldn’t know I had a bear. The Teddy Bear Incident was never brought up again, so I kept all my confusion and anger inside. Years later, my mom and I talked about it and she was surprised that it had made such an impact on me. Apparently, no one else thought it that big of a deal since I was only four years old. She explained that Auntie B and Uncle E didn’t know I had Teddy and had picked out the bear on their own, which was a revelation to me. Even after all those years, it still hadn’t occurred to me that they hadn’t known about Teddy.

The feelings, though, have never gone away. That experience is seared into my emotional memory. It was the first of many scars and a defining moment in my life. What seemed like no big deal to the neurotypicals in my family was enormous to me.

Again, time and experience have brought me perspective and understanding. I’m autistic and the way I process events and emotions is different from the way my family processes them. I learned that as an adult. I sometimes wonder now how that Christmas would’ve been different if they’d known I had autism. Would they have been more patient with me, aware that I processed differently and needed more time to work out The Bear Situation? Would Auntie B and Uncle E consulted with my mom on a good gift idea? Would my family have helped me work through what was bothering me when I displayed distress? I’d like to think all of the above, because even though our family had a lot of rocky patches, I know they loved me, then and now.

Whatever became of the new bear? I don’t know. I have no memory of him beyond that night. Teddy, though, “greets” me every day from his place of honor on my bookshelves, still my first and oldest friend.

*Quote from Stephen M. Edelson, Ph. D.