The DSAWM staff sat down a few weeks ago to interview our new Self Advocate Intern Eric Willinger.
Tell us about yourself, Eric.
I’m so cute!
Haha, and confident!
Yes! I am from Grand Rapids and live with my mom and dad. I have three brothers and one sister and am an uncle to my sister’s two boys. I graduated from Northview High School in 2006 and from 2006-2008 I went to Calvin College.
What are some of your hobbies?
I like word searches, bowling, watching sports, going to the movies, and traveling. I LOVE pop and eating hot dogs and french fries. At home, I help my mom with chores like doing the laundry, and I really like listening to Disney music. I also work at the Alpine Culver’s.
What do you do at Culver’s?
I’m a runner. I get lots of tips, sometimes $20 a week!
That’s awesome! And what made you want to work at DSAWM?
My friend Nate asked me. I like working with Nate a lot, even though he needs to shave! It makes me happy. I also like working with Victoria. She is happy, talented, and smiles a lot.
What sort of things do you do at DSAWM as the Self Advocate Intern?
I help prepare mailings, clean and tidy up, write thank you notes, and do artwork for events. I also help with advocacy presentations. Last month, Nate and I gave a presentation for Artists Creating Together. I thought the presentation went really good. I wasn’t nervous and had fun meeting new friends and people. I want to partner with Nate for more presentations in the future. Maybe I can bring some of my friends to help!
That’s a great idea, Eric! Are you enjoying working for DSAWM at the new SOMI center?
Yeah! I’m so happy to make money! I want to make more money, maybe $800 or $900 a week, but I enjoy getting a paycheck. I really like the lockers and old high school look of the SOMI center, but working can sometimes be hard with all the construction and noise.
What are some of your goals for the future?
I want to take a trip, maybe to Washington DC or Disney World in Florida. I really want to go to a MSU football game and this summer I hope to go to Camp Sunshine. Eventually, I want to learn to drive and would like to get married one day.
Those are excellent goals to strive for. What would you say to someone who is reading this and has goals like yours?
I would say hi, and good luck to everyone! Go out and make great friends because they will make you happy and can help you accomplish your goals.
My Name is Freddy Cook and I work for Special Olympics Michigan Area 11 at the new Special Olympics Michigan Unified Sports and Inclusion Center. I go to work twice a week and have a checklist of jobs that I need to accomplish every week.
My favorite thing about the Inclusion Center is the kitchen classroom where DSAWM has Thursday night Cooking Capers. We cook up delicious foods!!! My MOKA program also uses the kitchen classrooms to make meals and treats, like hot cocoa. We have really needed that hot cocoa this winter!!!
“Never give up,” is something I say to myself all the time. It means that the only way you can fail is if you stop trying. I learned that in Special Olympics.
In addition to being an athlete, I am also a student at Noorthoek Academy at GRCC, a Special Olympics Global Ambassador, a graduate of the Project Search Internship Program for adults with special needs, and the first ever special needs adult to be hired as a full-time employee in the surgical department of Spectrum Health. Three years ago, I was asked to be an athlete representative on the “Building Tomorrow’s Champions” Capital Campaign Cabinet to raise $10 million to renovate the old South Christian High School into the largest Special Olympics training facility and Inclusion Center in the world!
Earlier this month, the leadership of the Down Syndrome Association of West Michigan Foundation (DSAWMF) announced the Connecting Communities campaign, an $850,000 fundraising effort to move their headquarters to the new Special Olympics facility in Byron Center, expand staff and programming services, and build sustainability through an enhanced endowment fund.
DSAWMF and DSAWM leaders have already relocated their offices to the Special Olympics campus at 160 68th Street SW. The facility, formerly South Christian High School, has been transformed into the largest Special Olympics training and inclusion center in the world. The new facility provides significantly more space for Special Olympics and DSAWM program staff, volunteers, and area youth and adults.
“The invitation to join the Special Olympics at this new campus was a once-in-a-lifetime opportunity,” said Leach. “As we work to provide the very best in programming for children and adults with Down syndrome, I am pleased to be part of an effort that truly gives area families a strong support network, provides children with a place where they feel like they belong, and builds partnerships with like-minded organizations,” he said. “Demand for our programs is increasing,” said Kloeckner. “Currently, we are providing support to nearly 350 people with Down syndrome in the counties we serve, and we anticipate serving many more families over the next several years as West Michigan grows.”
“This is an exceptional opportunity for our community to help build a strong network of support for children and adults that sometimes struggle to find activities and opportunities that meet their abilities,” said Leach. “If we can provide the venue, we know we can reach more families.”
In just a few short days, my life was changed by COVID-19. Many of my routine activities were stopped and shut down. It felt like my life went upside down.
We all tried to make the best of the shutdown. I did lots of crafts. I made a blanket, colored pictures to give to friends and family, did my stamping, melted beads, and painted. We played lots of games like dominoes, Sequence, and Kings in the Corner. I read books and watched movies. We went for lots of walks at the beach and on trails at the parks. It was good to get fresh air! Of course, I did a lot of writing too! I learned how to make a homemade frosty and lots of delicious desserts. I learned how to make chocolate chip cookies! I even made dinner for my parents. People found ways to keep occupied in our own homes. We all had to make good choices.
When I was able to get my vaccine, I was nervous, but I tried to stay calm. I am glad that my vaccines are done. The pandemic has changed some things. It has been hard, but look at the good things! We can see our friends again. We can go on vacations. Special Olympics is starting again. My church is back in-person on Sunday mornings. It’s easier to ride Harbor Transit to work and back to my apartment. I’m looking forward to going back to college at Noorthoek Academy in-person.
His screening took place at our local Children’s hospital. It took about 4 hours and part of us wondered if we would go and they would dismiss his behavior as “low functioning” Down syndrome. We had heard from other families who had gone through testing 5-10 years before that it wasn’t an uncommon phrase when they inquired about a dual diagnosis. At the end of the appointment, we heard the words, he has autism. They would of course have to write up the report and file all the paperwork, but we had our disability punch card punched again.
As a parent I still feel like I don’t quite fit at either party. I don’t totally fit in with the Down syndrome crowd and the same goes for the autism community. Owen doesn’t fit in either box either. I’ve decided that I may not be the only parent feeling this way. My goal is to be as transparent about our dual diagnosis life as possible, while still respecting our son’s autonomy. I also want to share our story to encourage any parent who is feeling what we were feeling that you are not alone. That statistics are showing that more and more people with Down syndrome also have autism. And if you suspect your loved one does, it’s always worth looking into.
We still have difficult days, sometimes difficult seasons. We are all learning and growing and figuring out how to support Owen and one another as we move down this road. But we have hope again. The light is back in Owen’s eyes. He is a wonderful son, brother, and friend. He makes us laugh every day. He is blazing his own path and we could not be more proud of him.
I have a husband and 3 daughters, ages 19, 15, and 11. Our oldest daughter, Taylor, has several diagnoses, including autism, cerebral palsy, and epilepsy. Our middle daughter is typically developing; however, she does have severe anxiety. And our youngest is full of spunk and the spice of life! While I don’t have a child with Down syndrome, I’m here because no matter the diagnosis, we, as parents, have a lot in common. With four years between each of our kids, I have always told people there is a reason they are spaced so far apart. The early years were HARD. Taylor is significantly behind on everything in life. When she was little, she was in 3-4 therapies each week, plus a multitude of doctor appointments. This phase of life can be marked by tremendous grief that is pretty easy for everyone to recognize. It’s the grief of all the diagnoses and the loss of the vision and dreams we had for our lives, our families, and our children before they were born. This is where every fresh special needs parent is given the 
We had a phase when the girls were about 4, 8, and 12 when I realized we were in our “sweet spot”. I had read a blog post from a mom all about being in the “sweet spot”. It’s that time of life where your kids are out of diapers and more independent, but they still want to hug, snuggle, and hold your hand. At first, when I read that, it made me sad because our oldest daughter is not potty trained, she’s non-verbal, she needs assistance with everything. I thought I would never have the “sweet spot”. I would have to carry a diaper bag with us for the rest of my life. I let that grief run through me. Then I realized that just like when she was little, our experience might be different, but not less. I realized that although still in diapers, Taylor was doing good! She was more regulated than she’d ever been. She was happy and doing well. We were able, for the first time ever, to really go places together as a family. We went to events for special needs families, like sensory-friendly movies and specially planned carnivals. We went on wheelchair-friendly hikes and geocaching together. We were active as a family for the first time in over a decade. It was amazing. We were in our “sweet spot”.
I spent two years implementing my self-care plan and making sustainable changes in my life. It was during this time that I finally recognized the unique daily grief for what it was. That realization was a game changer. Knowing those common occurrences were leaving me feeling grief and not just stress, I was able to be so much gentler with myself. I was able to give myself the grace I would give to any one of my girlfriends if she were grieving. I was able to show compassion for myself and my ongoing grief.
I’m having a free self-care challenge the week of February 15th. I challenge you to take care of yourself. I challenge you to make yourself a priority. Join my It’s Your Turn. Register at 
Throughout the summer, our staff worked diligently to modify our plans for our annual Step Up for Down Syndrome event. Ours is the largest Down syndrome awareness event in the state and our biggest fundraiser of the year. By offering opportunities to participate either virtually or in-person in limited capacity time blocks, we were able to engage 39 teams and over 700 walkers. Though less than half of our usual attendance, our community still came together in full force and helped us raise 85% of our fundraising goal. This was huge as other events around the state struggled to hit even 25% of their goals. We truly felt the support of our community that day.
Perhaps our most significant undertaking in 2020 was the decision to move locations. DSAWM has grown drastically in the past decade and we are now serving more members than ever before and nearly all our programs are running at capacity. While our service area includes 12 counties, we only have the resources to create life-changing programs in three. We know that with more resources and space we could be impacting so many more people. Moving from our small downtown office to the first-of-its-kind Special Olympics Michigan Unified Sports and Inclusion Center is the first step towards realizing that goal. The move will: give us opportunities to reach more children, teens, and adults throughout our 12-county service area; allow us to partner with other existing agencies that serve those with physical or cognitive challenges by sharing space on the Special Olympics campus; and significantly raise our profile and visibility throughout the community. We are so excited for the sustainable growth that this move ensures for our organization and the endless possibilities it will create for our community.
What are you doing to keep yourself busy and stay positive?