2021 Summer - DSAWM

Connecting Communities

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 was established in 2012 to ensure the financial sustainability of its sister organization, the Down Syndrome Association of West Michigan (DSAWM). Founded in 1985 by six couples who had children with Down syndrome, the DSAWM’s original aim was to provide support and share knowledge with other families. Through the years, the goals of the organization have broadened to include regular programming for children, teens, and adults with Down syndrome. DSAWM also serves as an advocacy group, raises public awareness about Down syndrome, and provides for the distribution of information relevant to Down syndrome.

The DSAWM serves hundreds of local families by providing enriching recreational, social, and skill-building activities for area residents with special needs and their families each year. These activities help build a network of support for these families and their children, leading to life-long friendships and a connected community that provides support for families raising children with disabilities.

Launched last year, the Connecting Communities campaign has raised more than $800,000 over the last several months, 95% of the overall campaign goal. Over 75 community donors, local businesses, and area foundations have supported the campaign to date.

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.

During the public announcement of the fund drive on August 19th, President of Hobart Sales and Service, Jim Leach, and Product and Operations Manager at Rapidparts Inc., Rich Kloeckner, invited the public to join in the fundraising effort which will continue through the end of the year.

“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.”

Bob Boylen, Board Chair of the DSAWMF, announced that the campaign has received support from local and regional foundations, area businesses, and generous community donors. “We have been so fortunate to receive gifts to this important campaign. Our Campaign Cabinet joins me in thanking the community for their meaningful gifts. We now invite the broader community to help us complete this campaign effort. We welcome gifts of all sizes,” said Boylen.

“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.”

For more information and to support the Connecting Communities campaign, visit dsawmfoundation.org/connecting-communities.

Pandemic Perspective

by Kate Cole

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.

When COVID-19 started in March 2020, I moved from my apartment back into my parents’ house. We made this decision to keep me safe and so I wouldn’t be alone. I felt scared and worried at the same time. I was worried about my friends and relatives because I love them. I didn’t know when I would be able to see them again.

I didn’t work for a few months. There wasn’t any Special Olympics. My college went to Zoom classes. I couldn’t go to my volunteer sites. The rules for riding Harbor Transit changed too. I couldn’t go to church in-person. I missed my church family. My friends at Gracious Grounds all had to stay in their own apartments.

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.

Let’s end COVID-19 for good. Everyone wants their lives back to normal again. Won’t that be a great day?

Two Punches on the Disability Punch Card

by Amy Wigger

Your son is autistic. I let out a sigh of relief, at the same time feeling like someone had knocked the wind out of me with so few words again.

Three years before, almost to the day, another medical professional looked me in the eye and said five words, your son has Down syndrome. I was prepared for that diagnosis, even without a prenatal diagnosis. I had literal dreams about our third born child having Down syndrome, had mother’s intuition, and I believe a divine message somehow letting me know that Owen would be born with Down syndrome. So while the rest of our family and friends felt the world shift completely from under their feet, I was standing tall and strong. I prided myself on the way I gracefully handled this diagnosis that no one else expected and Owen soon began to thrive.

Owen began to say words around age 2. Simple words like mom and dad or cookie rolled off his tongue. Again, we were so impressed and excited. Life marched on.

Around age 2 and a half, we noticed Owen was getting lost in his own world more times than not. He was attracted to lights and anything he could hold in his hands and shake simultaneously. I would later be informed at his autism testing that this was in fact him flapping, a characteristic of autism. He was becoming more and more angry and his words had all disappeared, really before I noticed, they were gone. He didn’t try to sing along with songs anymore and the light we used to see in his eyes was almost gone.

As parents we began to wonder what we were doing wrong. We hadn’t changed any routines or the way we interacted with Owen. His environment was consistent, and we kept basically the same daily schedule. We were at a loss. We were frustrated and sad, mostly because we wanted to help Owen, but we had no idea how. I was watching other kids with Down syndrome surpass Owen’s developmental milestones. Their temperament was drastically different than Owen’s. I quit going to playdates, not just with typical kids, but with families who had kids with Down syndrome. We had to be failing him somewhere. Why was our child the only one not moving forward?

Owen’s teaching team were the ones who told us that they thought it would be beneficial for Owen to be screened for autism. I was confused and sad, but all of a sudden a bit hopeful as well. Maybe we weren’t terrible parents, maybe there was more going on.

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.

It took me longer to accept this diagnosis. It didn’t feel fair that Owen would get another diagnosis. One that would complicate his life further. One that may limit him further. I allowed myself to stay in that place. I still allow myself to feel those feelings, to mourn that our son no longer “just” has Down syndrome. These days we see autism characteristics come through into our daily lives more dominantly than Owen’s Down syndrome characteristics.

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 also see light again. Owen began ABA therapy and has been attending what may be an actual utopia of therapy centers for 5 years. He is fully included in a general education setting where his school welcomes his behavior techs with open arms. The team he has works together to make sure everyone is on the same page, and we are all working together to meet Owen’s needs so he can thrive. He also is gaining some verbal language back and successfully uses a device to communicate with those around him.

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.

For more information about DS-ASD dual diagnosis, visit dsawm.org/resources/dual-diagnosis.