by Molly VandeWater

DSAWM intern and self-advocate Molly celebrated her 32nd birthday on July 21st. From blueberry picking with her CLS worker to enjoying a Frozen 2-themed cake with friends, Molly’s birthday was a fun-filled day!

I started my birthday by going out with my aid [Molly’s CLS worker] Jess. We did some blueberry picking, got ice cream, and she gave me my birthday gift and birthday card. We also had a birthday lunch picnic.

After I got done working with Jess, I came back home. My parents got me some birthday gifts to open. Then my Aunt Michele came over to my house and gave me a birthday gift and card. I totally loved that! We also had a glass of wine too. It was really nice of her to come to my house. 

Later, I had some of my friends come over to my house for my birthday party. We watched some really good movies on Disney+ on my TV in the basement, then we went up to have our dinner. We had a hot dog bar. It was really good! We stayed upstairs in the living room and I opened all of my birthday gifts from all of my friends. It was really nice of them to come to my birthday party! They sang “Happy Birthday” to me and I blew out all of the candles on my Frozen 2 birthday cake. We had some ice cream too. I hugged all of my friends before they walked out to their cars to go back home.

After they left, I tie-dyed shirts and socks with my niece. It was my best birthday ever of my life!

by Erin Doyle Toburen

Elvis arrived in blue suede shoes, aviators, and a jumpsuit shortly before the end of my freshman year of college. Already the parents of four children – ages 10 through 18 – the thought of an infant was a decade removed from my parents’ mind when they found themselves unexpectedly expecting. On that April morning when the baby arrived, my father called me to announce the baby’s arrival.

It was a boy, he said, his name is Liam, but – but – he arrived with an extra chromosome. He arrived smaller than his older two brothers had, but little did we know, his entrance would rock our world. As a college Freshman, I drove six hours home from Steubenville, Ohio, with my college roommate to meet my brother in the NICU. His short visit in the NICU due to a heart murmur for only five days after birth gave us our first glimpse into this beautiful life we had now been given.

A few weeks after returning to college, I sat in a meeting with my sorority sisters where our sorority mother in her mid-thirties brought her adult sister with her. Her sister, born with Down syndrome, was vibrant and beautiful. I bawled. I had not yet grieved over the lost expectation of a sibling born without an extra chromosome. Ashamed because I knew my sorority sisters knew why I was bawling only increased my flood of tears. Our sorority mother soon became my personal mentor, sharing with me who her sister was, how her sister influenced her life, and how her sister was not defined by the fact she was born with Down syndrome. Sixteen years later, I am still grateful to my sorority mother.

“Down syndrome” slowly settled itself into our family’s vernacular and questions swirled. “Down syndrome” – would he go to college? “Down syndrome” – would he be able to talk? “Down syndrome” – would he be able to walk? “Down syndrome” – what does that even mean? “Down syndrome” – what would be his life’s trajectory?

Like everything else in life that is considered outside the everyday “normal,” people began asking questions they should not and voicing opinions they should not. When we mentioned that our youngest brother was born with Down syndrome, people sometimes made the trite (albeit well-meaning) comments such as: “God only sends children like “that” to “special” families, so you must have a special family” or even the suggestion that people born with Down syndrome could be healed “from” Down syndrome, perhaps suggesting my brother could be “healed.” Such well-meaning comments failed to see the reality in which my brother lives. They did not see the three-month struggle my mother went through before he would latch while nursing. They did not see how Celiac’s Disease, a common condition in people born with Down syndrome, impacts his daily life. Most importantly, such comments failed to account for the fact that Down syndrome never defined him, rather Liam would define his own life and influence those around him.

Liam would help influence some of most important decisions in my life. As a college intern for the U.S. State Department, I dreamed of one day becoming a foreign service officer. The adventure, travel, and importance of the diplomatic mission called to me, but Liam called stronger. I knew if I chose a career in the foreign service, I would spend much of my life away from Liam so I chose law school to keep me stateside.  I chose Saint Louis University, because it was only a day’s drive from Liam.

My career eventually brought me back home to West Michigan where I practice in-house international corporate law and live five miles from Liam. Living so close to Liam has given me front-row seats to witness the symphony Liam has composed with his life. His symphony crescendos with his gregarious personality, pauses at his thoughtfulness and is driven by his incredible work ethic and Elvis. Oh, so much, Elvis.

When Liam was thirteen, he began watching reruns of Full House like it was his full-time job. His favorite character soon became Uncle Jesse. Liam talked of nothing but Uncle Jesse for months. He would recite entire story lines and facts about Uncle Jesse to anyone who was willing to listen to his two-hour monologues (Thank you, Carl!). Uncle Jesse was suave. Uncle Jesse liked music. Uncle Jesse loved Elvis.

One thing led to another and Liam soon forgot Uncle Jesse. Liam only talked about Elvis. Elvis’s horse, Elvis’s history, the nuances of the Elvis-Priscilla relationship, and Graceland. If you wanted to listen to music around Liam, it had to be Elvis, and, for the first and only time in his eyes, Liam thought I, his older sister, was cool because I wore aviator sunglasses like Elvis.

Like the Full House era, our family hoped Elvis was simply a phase. My dad complained about Elvis every time someone mentioned him. My parents spent their honeymoon driving through the Upper Peninsula of Michigan in August of 1977 when Elvis died and the only thing one could hear on the radio was Elvis music. Unlike the Full House era, Elvis was a new way of life.

When Liam’s quest for all-things Elvis could not be satiated by historical facts or the Sirius-XM Elvis station being played 24-hours a day, Liam decided he wanted to become a real-life Elvis Tribute Artist (“ETA”), and an ETA he has become. For the past several years, Liam has taken dance and music lessons to improve his voice and stage presence.  He practices every day – sometimes for hours – at our farm on his music. He entertains his seven nieces and nephews with his music and dancing to make sure they get to see him realize his dream someday. He beams with pride when my three-year-old daughter insists on calling him “Uncle Elvis.”

His inspiration for his hard work and drive has been the ETAs he has met over the past several years at the various events my parents traveled around the country taking him to see. The first of these was Elvis Tribute Artist Jake Slater my mother and Liam met while vacationing in Northern Michigan.

Thanks to Mr. Slater and the other ETAs who have inspired him Liam began performing to large audiences in 2019. Last April, Mr. Slater performed at Liam’s sixteenth birthday party and let Liam sing alongside him in front of over a hundred people. In July, Liam attended the Graceland Performing Arts Camp at Graceland where he met other Elvis fans for the second summer in a row and made friends across the country. Then in October, Liam made his YouTube.com debut when he performed “Peace in the Valley” at the 27^th Annual Elvis Annual Fantasy Festival in Portage, Indiana. The proceeds from the event benefited the Porter County Special Olympics. Liam has since performed at company Christmas parties, represented Elvis fashion at the National Association for Down syndrome Fashion Show in Chicago, and sang at a wedding.

Thanks to Elvis, Liam keeps in shape so as not to hinder his chances of someday competing to become an Ultimate Elvis Tribute Artist. Thanks to Elvis, Liam tells us that he loves performing because he likes to make people happy and make the world a brighter place. Thanks to Elvis, Liam constantly reminds us that our chromosomes do not define us. Thanks to Elvis, Liam is determining his own life’s trajectory. Thanks to Elvis, Liam has found his voice.

Erin Doyle Toburen is an inhouse corporate attorney who resides in West Michigan and enjoys (trying) to keep up with her large family, writing, and riding a retired Amish horse named Reudi.

by Liam Doyle

Elvis may have left the building, but Liam is keeping the King’s legend alive with heart and style. At just 16 years old, Liam has already traveled the country performing as a bona fide Elvis Tribute Artist, or ETA. He may have a big pair of blue suede shoes to fill, but Liam is up for the challenge!

How did you become interested in Elvis?
I learned about Elvis from Uncle Jesse (John Stamos) on the TV show Full House. When I was 12 or 13, I found an Elvis jumpsuit, black wig, sideburns, and aviator sunglasses at Party City for Halloween. Then I started watching Elvis’ Las Vegas concerts on YouTube and learning his dance moves. In 2017 I met Jake Slater, an ETA from Bellaire, Michigan. My mom and I went to several of his outdoor performances and he let me sing and dance with him. I was hooked.

Where have you performed?
I have performed many places: assisted living homes; with ETA friend Jake Slater for my 16th birthday party; a wedding reception; a company Christmas party; my parish fall festival; a retirement party; the Alto Lion’s Club; several talent shows including Camp Sunshine, Family Tree Therapy, Kent County 4-H Youth Fair, and the Kellogg’s & DSAWM Member Talent Show; 5/3 Ballpark for the DSAWM Step Up for Down Syndrome Walk; an Elvis birthday party at Brody’s Be Café where I work as a BErista; the Elvis Fantasy Fest in Portage, Indiana; the National Association for Down Syndrome Fashion Show in Chicago; Lakewood, Colorado where friend and world famous ETA Cody Slaughter invited me on stage to perform a song with him; and last month another friend and world famous ETA Dean Z invited me to dance to “Jailhouse Rock” with him on an Elvis Tribute Cruise.

Why do you like to perform like Elvis?
I believe God has given me this desire to perform like Elvis to make people happy, especially when singing Gospel, Christmas, and love songs. Elvis’ music is in my blood and I want to keep his legacy alive with other ETAs because Elvis was such an amazing performer. I also enjoy performing because I love it when I get a standing ovation and people want my autograph and their picture with me.

Have you ever been to Graceland where Elvis lived?
Yes, my Aunt Merlene and Uncle Mike live near Graceland, so we go there at least twice a year. I also went to the first ever Graceland Performing Arts Camp for kids in 2018, again in 2019, and I’m going again this summer. This camp helps kids learn how to sing, dance, and act with a lot of inspiration from Elvis.

What are some challenges you’ve had becoming an ETA?
All ETAs have a huge challenge performing like Elvis because he was one of the greatest entertainers ever. I have many extra challenges, but I don’t let that stop me because I am determined to “Follow That Dream” of being an ETA. I have had years of speech therapy, orthodontic work, voice lessons, dance lessons, and Tae Kwon Do.

Why is Tae Kwon Do important for you as an ETA?
Tae Kwon Do helps me with balance, strength, and focus when performing. ¬¬Elvis earned an 8th degree black belt in Tae Kwon Do and one in Kenpo. He used martial arts moves in his performances on stage in Las Vegas. Also, his famous jumpsuits were designed after martial arts uniforms to give him more room to perform those energetic moves on stage.

What are your plans/goals for your future as an ETA?
For now, it is a fun adventure and hobby to be an ETA and meet other ETAs from around the world. I never know what is going to come up next, but there is always another opportunity to perform just around the corner. Also, I hope some day there will be a Special Olympics event for ETAs like me to compete for the title of “Special Olympics Ultimate ETA”!