Jumping In With Both Feet

Written by Katie VanOeveren
February 2023

For the second time, I jumped in the Special Olympics Polar Plunge. I’m a Special Olympic athlete and I support my friends and my teams when I jump in the polar plunge. I like to be involved in a lot of activities and this in one way I can make other people aware that I do Special Olympic sports and that they can help out too.

I work with my mom and dad to make entertaining videos for Facebook, trying to get everyone excited to donate on my behalf. I have a lot of fun coming up with ideas and making the videos. I like the comments that I get. I also handed out a flyer at work, church, and other places to get people aware of the polar plunge and possibly get them to donate.

Last year, my goal was to raise $500 and I was really surprised when I raised just over $2000. This year I set my goal at $2000 and was even more surprised when everyone donated $3600 for me to jump in the cold water. That’s a really big amount.

Last year, the weather was terrible but this year the sun was shining but the water was still very cold. People ask me if I was scared to jump. I’m not scared but I don’t like the cold water. The energy of the crowd helps me get through jumping.

Thank you for supporting me and Special Olympics. I’m already making plans to jump again and hope you will be there to support me next year.

Making The First Call

Written by Victoria Hart
February 2023

Learning that your baby has Down syndrome is an overwhelming and emotional experience for most parents. That’s why the “first call” is so important.

In January, DSAWM launched the First Call Network. This important program connects new and expectant families who have just received a Down syndrome diagnosis to trained Parent Mentors who offer compassionate support, information, and guidance. For most families, that “first call” is their introduction to the Down syndrome community. Speaking with another parent who has walked in their shoes and can answer questions about the challenges and joys that lie ahead has a huge impact on the child and family.

“Those first couple of months after a diagnosis are incredibly important – not to mention finding a strong local support system,” says Parent Mentor Ben Hughes.

Ben is one of nine DSAWM members who completed training with the MDSC National Parents First Call Center last month to become a Parent Mentor. Now, when DSAWM receives a referral either from a hospital or directly from a new family, an immediate connection can be made with parents like Ben. Parent Mentors are carefully matched with families based on several factors including geographic area, ethnicity and primary language, shared health issues, and diagnosis stories. During that family’s first year, their Parent Mentor will periodically check-in to offer support, answer questions, and send personal invitations to DSAWM programs and events.

“When we got our prenatal diagnosis, I was given a brochure by my OB, but other than that I did not have any local connections. I found an amazing community through social media, but I feel like we can do better.”

Parent Mentor Kathy Winn is right. We can do better. DSAWM’s First Call Network will help us reach more families at the time when they are most in need of support. It will also ensure that those new families are welcomed into the DSAWM community and know that we are here to support them for the journey ahead.

Our first Parent Mentor connections are already being made and we are starting to see how this program will positively impact families across West Michigan. To take that outreach one step further, we are excited to share that our First Call Network is partnering with nationally recognized nonprofit Jack’s Baskets. Through this partnership, we will be able to provide gift baskets to every new family who joins our community, as well as equip local medical providers with tools to discuss the diagnosis in an unbiased way in hopes that having a baby with Down syndrome is celebrated like any other.

Our community continues to grow year after year. DSAWM is committed to ensuring that each new family is welcomed with a congratulatory and supportive first call.

For more information about the First Call Network, visit www.dsawm.org/firstcall.

Jenna Lee: Youth Ambassador

Written by Ruth Lee
February 2023

Jenna Lee, member of the DSAWM Self-Advocacy Board, has spent the past year training as a Youth Ambassador through the Center on Youth Voice, Youth Choice. CYVYC is a nationwide resource center for youth with intellectual and/or developmental disabilities (IDD). It promotes alternatives to guardianship for youths with IDD who are entering that transitional age.

As part of her training on CYVYC’s Michigan Team, Jenna had to choose and implement a project to teach others about supported decision making, whereby those with disabilities may retain their independence through such means as trusts, Power of Attorneys, and the help of a Circle of Support.

At age 17, Jenna is beginning her transition into adulthood. She has chosen as her CYVYC project to make a year-long series of short one-minute videos, one per month, chronicling this transition and advocating for supported decision making. These videos can be found on her Facebook (Jenna Lee), on Instagram @ JennaLee792, or on YouTube by searching Jenna Lee Youth Ambassador. Check her out!

Celebrating “Designer Genes”

Written by Taya Geglio
February 2023

My name is Taya. I am currently a junior at Jenison High School. I am on both the sideline and competitive cheer team at school. I love to hang out with my family and friends in my free time. Besides Aiden, I have two other siblings.

My favorite activities to do with my brother Aiden are going swimming in our pool, playing video games, going out to the movies, or going to get food. Aiden always has the biggest smile on his face. He’s the sweetest ever. He is a senior this year at Hudsonville High School. His favorite thing is watching WWE wrestling every Friday night.

Aiden also loves designer brands. One of his favorites is Gucci. This inspired my design a lot and is why I chose the “designer genes” phrase. Anything designer is very special to him and having a shirt made for him while incorporating things he loves was very important to me. The design on the back is three arrows representing the three 21st chromosomes, and it represents rising up and moving forward.

To show your support for members like Aiden, order one of Taya’s t-shirts today! All shirts can be picked up at the World Down Syndrome Day Dance on Saturday, March 18 or in the DSAWM office the following week. Celebrate your “Designer Genes” by ordering a shirt HERE.

Cute and Confident!

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.

A Great Place to Work

by Freddy Cook

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.

The new Inclusion Center is very big. My favorite job is to give tours of the facility. There are two gyms, a big gym and a little gym. Right now there are volleyball teams using the gyms for practice and tournaments. I like that there are two gyms because I like sports and especially love basketball. Sometimes my MOKA program uses the small gym and we play a very competitive game of basketball. My team wins!!! Or sometimes we tie!!!

There is a stage and an auditorium in the Special Olympics Michigan Unified Sports and Inclusion Center. I am hoping that the DSAWM will host a big talent show on that stage soon. There can be shows, movies, and concerts too!!! I will bring my ukulele and sing!!!

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!!!

There is still construction going on at the Inclusion Center. They took out the school lockers and made space to display kids’ artwork or information to help people.

Every week when I go to work the building looks better than the week before. I love the Inclusion Center!!! Everyone is really nice and it is a great place to work.

Never Give Up

by CJ VanSkiver

“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.

I love sports but as I got older, it got harder for me to find teams to play with and make friends. When I was a freshman in high school at Forest Hills Northern, someone had the idea of forming a Special Olympics girls basketball team. I thought that was a great idea, so I got all my classmates to join me and we created Team Thunder. Eight years later, I still play on that team. We have earned two State Championships and become a sisterhood of friends. We support each other on the court and in lots of other ways, too. We cheer each other on no matter what we dream and always look to include everyone whenever we can. This experience is about so much more than sports. It has also helped me to be a leader for inclusion in many ways.

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!

My favorite part about that opportunity is, of course, the gymnasium because it is the only one in the world that has the Special Olympics logo right in the center of the court. It makes me so proud every time I get to play there. My second favorite part is that our Inclusion Center isn’t just for us, it’s for everybody! I love to see all kinds of people there playing, learning, growing, and being a part of our movement. It is full of people who think like me and know how important it is to “Never Give Up.”

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.