Dylan's Story: Artist, Athlete and Advocate

December 5th, 2013
"Yes, I have Down syndrome, but that?s not going to stop me from being a rock star!?


Dressed in a ?DOWN SYNDROME ROCKS? T-shirt, Dylan sets down his drumsticks and picks up a microphone to address the crowd, ?I am the founder of The Jackson Memory Band. Yes, I have Down syndrome, but that?s not going to stop me from being a rock star!?


He returns to his seat behind the drums, and the band starts its set.

Dylan, the lead drummer in this Michael Jackson cover band, is a talented musician, as well as a record-setting power lifter, skilled artist and dynamic motivational speaker. A ?Renaissance Man,? his mom, Terri, calls him.


Dylan says he is a ?music man? at heart. Music is his greatest passion. He likes listening to others? music and making his own.


?I?ve been drumming since I was 10. It came to me so naturally,? Dylan, now 30, recalls. ?I always wanted to build a band. It had been a dream of mine.?


That dream came true about a year ago. With help from his drum instructor, Dylan recruited fellow musicians to form The Jackson Memory Band. The band has played at events such as the 2013 Special Olympics Summer Games Opening Ceremony, and recently completed a tour of Maui.


It is the band?s mission to keep Michael Jackson?s ?Heal the World? legacy alive, while also advocating for inclusion.

As the only band member with a disability, Dylan wants to help people with disabilities be seen as valued members of the community.


?When I?m performing in the band, I feel included,? Dylan says. ?It's all about team effort as we leave our egos at the door and become a team.?


Dylan, a resident of Olympia, Wash., feels that sense of belonging whether on a stage or in the gym. Every Saturday, Dylan and the other 11 athletes that make up the Elite Iron power lifting team take over one corner of the weight room at the Valley Athletic Club in Tumwater. In addition, Dylan has been working out with fellow Elite Iron lifter Kegan Engelke three or four nights a week since 2010, shortly after Kegan started helping coach Dylan?s Special Olympics power lifting team.


Kegan and the other Elite Iron lifters hold Dylan to high standards in the gym. Just as any of his teammates, Dylan is expected to load and unload plates, spot his teammates and lift as much weight as he can with perfect form.

?Nobody treats him as a special athlete. He?s treated just like one of the guys,? Kegan says.

Dylan agrees, ?They may be tough on me, but that's just their way of getting me to do better.?

The Elite Iron team belongs to the World Association of Benchers and Dead Lifters (WABDL). Dylan competed in his first WABDL meet in June 2011 as a Special Olympian lifter. The following year, he moved up to Disabled 2 Men and Class 1 Men (non-disability division). This June, he set a world record of 330.5 pounds in the single-lift bench press for his age and weight class in the Disabled 2 Men division.

In November, Dylan competed in the WABDL World Championship, taking home first place finishes in bench press and dead lift in the Disabled 2 division, as well as a third-place medal in bench press and a sixth-place finish in dead lift in the Class 1 division.

It is Kegan?s goal for Dylan to have a serious shot at winning the Class 1 World Championship someday.

?When people see Dylan at the gym, I don?t want them to say, ?That kid?s strong for having a disability.? I just want them to say, ?He?s a strong guy,?? Kegan says, adding that as well as becoming physically stronger, Dylan?s social skills have immensely improved and his confidence has multiplied since joining Elite Iron.

An active lifestyle became especially important for Dylan during his pre-teen years. Around age 10, he started displaying anger and aggression, a response to being physically mistreated in his childhood, Terri says. However, a turning point came when he began to channel his anger into physical activities.


?I found martial arts, a drum set, dance and art. We put those four things in his world very intentionally, essentially, to save him,? Terri shares.

These activities served as therapy. A painting instructor was needed mostly to help Dylan manage his emotions, particularly his fear of being imperfect in his art. Terri describes Dylan?s first paintings of a wolf and a panther as dark and sinister. He wouldn?t let anyone see him paint, nor would he allow an audience while he danced or played the drums.


But in time, he learned to forgive himself for making mistakes, and the colors and tone of his paintings began to lighten. It took several years before he let others see him paint and dance, but he eventually discovered a love for creating and performing.


?Art to me doesn't act as art. I am the art; art is me,? Dylan expresses. ?It makes that thumping sound of my heart that makes me feel good, and it gives me joy. Art ? and dancing ? heals my wounded heart.?

Through the years, Dylan has built a career around the things he loves to do. In 2005, he founded DK Arts, a visual and performing arts company, allowing him to utilize his creative, performance and public speaking abilities as an artist and motivational speaker.


Dylan started selling his paintings on greeting cards, calendars and more. In recent years, he has also learned to cut and design unique fused glass jewelry and decorative tiles. His creations are sold at Ventures in Pike Place Market, the Pacific Northwest Shop, a boutique in Sacramento, Calif. and a few shops in downtown Olympia.

With his mom?s help navigating and networking, Dylan has been hired as a motivational speaker at a variety of venues including an art gallery in Amsterdam; local, national and international disability-related conferences such as the Down syndrome World Convention in Ireland; and many employment-related conferences. He speaks about entrepreneurship and ends his presentation with a dance or martial arts demonstration. The audience is always educated, entertained and inspired, according to Terri.


Outside of his business, Dylan also gives back to his community. Since the age of 19, he has volunteered as a stocker at the grocery co-op across the street from his apartment, which is located above his mom?s garage. In that time, he has gone from 100-percent side-by-side support to 100-percent independence.


?I think it?s fun to volunteer at the co-op and to meet the customers,? Dylan says. ?I like providing good service to the community, and it builds character.?


Terri has always made it her mission to provide her son with opportunities for community inclusion and access to integrated experiences. This has been crucial to his development and his success in finding what interests him, she says.


?Dylan feels that he is part of this community, and he knows he?s a role model,? Terri expresses. ?He is a new face and a new voice of disability. It?s not about disabilities anymore; it?s about abilities.?


As a parent, Terri tries to not limit Dylan and encourages him to ?dream big.? It is one of Dylan?s goals to build a second band ? one that plays children?s songs. He also has academic ambitions to attend college, with an interest in studying video game design or history. Currently, he is working with private tutors to study for the GED test.

In his motivational talks, Dylan shares advice that he appears to apply in his own life, as well.

 ?Believe in yourself,? he says. ?Let nothing stand in your way of fulfilling your dreams.?


Ken September 2013

November 20th, 2013
On a recent trip with his sister, Ken treated his neice to a birthday dinner, and she gave him some tips about handling chopsticks.


You may remember Ken who was featured in the January Community Inclusion newsletter.  When we last talked with Ken, he had temporarily stepped away from Taekwondo after earning his First Degree Black Belt, and was focused on his bowling league and spending time with his friends and family.

 Since we left Ken, he has had several changes in his life.  For starters, Ken decided to resume his Taekwondo training, and is currently working on earning his Second Degree Black Belt.   So far, Ken has learned 46 of the 81 moves necessary to move to the next level, and was eager to demonstrate as soon as I reached his front door.  Ken is in the process of saving up to travel to Disneyland in March 2014 to compete in the American Taekwondo Association Spring Nationals Competition. 

 In addition to reconnecting with his Taekwondo community, Ken has also had the opportunity to spend lots of quality time traveling with his family.  Having recently returned from a trip with his sister to the ?Waterpark Capital of the World? (in Wisconsin Dells, Wisconsin), Ken tells me that he was able to visit the ?#1 Waterslide in the US.?   ?? the trip was really fun!  The waterslides are crazy!?  Another highlight of this trip was being selected to be a participate in one of the shows that he and his family attended ? something that Ken?s sister, DeeEtta, says Ken had been hoping for since first glimpsing the show?s advertising brochure.

 These vacations are especially meaningful and exciting, as Ken has had few opportunities to travel until now, and has taken few vacations with his siblings.  During this latest trip, Ken was able to spend some meaningful time with his sister and his niece (who Ken treated to a birthday dinner while they were traveling), and has at least two more trips planned for the near future with his other siblings.

 At this time, Ken is planning on taking a family trip to Vancouver, BC, and he and his sister are in the process of planning a sentimental trip this fall to Reno to visit the bowling alley where his mom and dad had competed in a bowling tournament many years earlier.   ?My mom and dad went there in a [bowling] league?. I am going to get my picture taken on the lanes where my mom and dad bowled.?

 Though life has issued Ken some ups and downs throughout the past year (including the loss of his mother and the loss of a job), Ken remains positive and excited about what the future holds.   Ultimately, Ken says that right now he is focused on realizing his dream of obtaining a Fourth Degree Black Belt, and is open to what life has in store for him. 

 When asked what he is looking forward to, Ken gives an optimistic answer that encapsulates his outlook:  ?I?m just excited to see what else is in the world that I don?t already know about.?

See more pictures from Ken's travels in his updated Photo Gallery!

An inspiring story!

October 11th, 2013

Please check out this story about a young man following his own path on his own timetable and be inspired!



Alex's Story: From Isolated to Included

October 3rd, 2013



The smell of chlorine wafts through the air, sunlight streams through the windows, and the sound of laughter echoes off the walls as dozens of kids and parents splash in the Spokane YMCA pool.


Calmly strolling out of the locker room, Alex tosses his towel on a bench and slides into the lap swim lane at the far end of the pool.


Alex comes to the gym a few times a week, either to swim or to work up a sweat on a stationary bike. He also starts his day with a brisk run through his neighborhood, and can often be spotted pedaling his bike down the street or on area trails. Movement is therapeutic for Alex, who has autism.


But not long ago, anything beyond a routine walk around the block could be over-stimulating, considering Alex?s sensitivity to lights and sounds. An outing to a place as loud as a public pool simply wasn?t an option.


Alex has been supported by SL Start since 2001. But for the better part of the last decade, bad days outnumbered good, as Alex displayed volatile and self-injurious behaviors almost daily.


Program supervisor Sandra Brunskill, who started working at Alex?s apartment four years ago, was initially concerned about the situation, but things soon changed. ?Now that I?ve gotten to know Alex, you can?t pull me out of here. Alex warms my heart,? Sandra shares.


Alex?s transformation into a well-liked and active member of his community started about three years ago. He was in the middle of an eight-month hospitalization when Wayne Altig joined SL Start as a positive behavior support coordinator.


?Essentially, the hospital told us that Alex would never be successful in supported living or in the community. When people say something like that, I say, ?Okay, we?ll see,?? Wayne says with a knowing smile.


Not a fan of making blanket statements about people, Wayne believed that Alex just hadn?t had his potential tapped. So, he researched Alex?s history and sensory needs, and began developing a plan and training staff.


Alex?s team eliminated anything that would trigger a behavior of concern, soundproofed his room to make it a place of refuge and worked on teaching communication skills. They also discovered that Alex was possibly suffering from frequent migraine headaches, causing him to bang his head, a behavior that has since been minimized with medication. 


Over time, Alex?s aggressive behavior became less frequent and less intense, and staff became able to deescalate him by redirecting or talking to him.


As they grew more comfortable working with him, they became more willing to suggest new activities without being afraid of his reaction. As a result, he is now exploring environments and experiences that were not available to him in the past.


Alex has caught flicks at the movie theater, driven go-carts and discovered he?s a pinball wizard during an hour-long visit to a local arcade. He also bought a bike with a sidehack to enjoy rides with friends including a 13-mile trail ride in Montana.


He goes out to dinner weekly and is especially fond of the all-you-can-eat option at Skippers! He also likes tinkering at the local junkyards, and always finds a treasure to bring home.

This summer, he traveled to Seattle, where he caught a Seattle Mariners game, toured the Woodland Park Zoo and Seattle Aquarium, browsed Pike Place Market and rocked out at the EMP Museum at Seattle Center.


?He is doing so many things that people said he couldn?t do,? marvels Alex?s cousin, Bill Morris. ?I think I can speak for a lot of people who care about Alex and say that it?s been absolutely inspirational and life-changing to see all that he can do.?


Those closest to Alex say a key turning point in his journey was his newfound ability to form connections with other people, starting with home support specialist Joe Konek. Although Alex would neither touch nor make eye contact with anyone, Joe would greet Alex with a high five, fist bump or handshake. Eventually, Alex responded. Encouraged by the progress, Joe started joking around with Alex.


?He was following me one day, just right on my tail. I said, ?Do you want a piggyback ride?? He jumped on, and I took off running and spinning. He found it hilarious,? Joe reminisces with a laugh.


Soon, that playfulness began to spill over into Alex?s interactions with others. Neighbors? doors that were once kept locked to keep Alex out are now open, allowing him to visit Helen and the other women in the apartment across from his to share meals, entertainment and laughs. Alex loves to wait for Helen to stand up from her chair and then good-humoredly sit down in her place.


?The fact that he goes and interacts with his neighbor is a lot more community inclusion than you see in a lot of prominent neighborhoods in town,? points out Jennifer Purcell, ARNP.


Jennifer met Alex five years ago. Since that time, he has become a happier person, she says, noting the smile she often sees on his face. He also shows affection and is engaging in meaningful relationships with friends and family.


Alex?s cousin Diane Stangland has delighted in witnessing Alex graduate from avoiding her gaze not long ago to now greeting her with a kiss on the cheek.


?It?s really awesome to see the progression in his life,? Diane says. ?Every day when I see the difference in Alex, it lights up my life. It puts a glow in my heart for him knowing that he?s having a more fulfilling life.?


But, this is by no means as good as it gets for Alex. Plans are in the works to help him pursue his interest in animals by occasionally feeding horses at the fairgrounds and possibly taking horseback riding lessons. More walks and hikes are also on tap so that Alex can continue to discover his community.


In addition, Alex?s increasing tolerance of crowds is making it possible to attend more sporting events. And his enjoyment of swimming is inspiring next year?s vacation plans, which involve a cabin at the lake, fishing and other water activities.


Next steps also include exploring Alex?s ability to communicate with a broader circle of people, something which he has not yet seen a need to do, according to Wayne. Currently, Alex is routinely signing ?please? and is being encouraged to also either sign ?eat? and ?drink? or use pictures to communicate these requests.


?The more independent he can become and the more effective he can become in the community at communicating, who knows what he can accomplish,? Wayne says. ?I would never put a limit on what I think Alex can do.?

September 2013 Newsletter

October 1st, 2013

The smell of chlorine wafts through the air, sunlight streams through the windows, and the sound of laughter echoes off the walls as dozens of kids and parents splash in the Spokane YMCA pool.

Calmly strolling out of the locker room, Alex tosses his towel on a bench and slides into the lap swim lane at the far end of the pool. 

Alex comes to the gym a few times a week, either to swim or to work up a sweat on a stationary bike. He also starts his day with a brisk run through his neighborhood, and can often be spotted pedaling his bike down the street or on area trails. Movement is therapeutic for Alex, who has autism.