2020 was a crazy year full of disappointments, but also MAGIC! We have moved the Down Syndrome Association of West Michigan into a very exciting space with other likeminded organizations, navigated a pandemic, started virtual programs and events, and kicked off an exciting campaign to benefit DSAWM and the DSAWM Foundation.
I am also very excited to announce that in February, I was elected to serve on the board of the Down Syndrome Affiliates in Action (DSAIA). This is a national board that has a strong commitment to serving the members of our organization, local DSA’s. Our primary goal is to make sure that our members receive the training, resources, and support they need to be productive leaders within their own organizations. This means that we are here to support the individual Down syndrome associations across the United States. My goal with the DSAIA is to serve those individual DSA’s, to teach and learn from each other and grow our organizations together.
The Down Syndrome Association of West Michigan is a leader for other DSA’s in our state and across the country. We have drawn national attention because of our Foundation, endowment, and the move to the Special Olympics Unified Sports and Inclusion Center. We now live with several other disability organizations that we happily partner with and call our neighbors and our community at SOMI. This initiative will benefit all of our members.
My family and I recently moved to Lake Odessa, in Ionia County. I believe it is important to live in a county that the DSAWM serves, and I would love to bring more opportunities to our members who live in outlying areas. I look forward to continuing our organizational growth and serving our members. I love our community and am so thankful to continue to be a part of it!
Yours in Leadership,
Jennifer DeVault
Executive Director, DSAWM
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?
Cody: We met 4 years ago at Noah’s Landing in Florida, a special needs housing community. We knew we liked each other because of the same likes, the connection we had, and the same passions. We both love Josh Grobin, music, Disney, family, love, dancing, singing, and art. I knew I wanted to marry Lisa because I am doing it out of love. She is a caring person. She will always be my honey. She likes to hug me a lot, and she is outgoing and social.
Cody: I
Our plans for the future are to NOT have children. We want to have happiness, joy, love, and respect. We want to stay busy and go to concerts. We want to host our own family night, game nights, and dinner parties!! We both plan to get jobs or continue with day programs. People with disabilities have the same rights to get married and be like any other adult couple in the world. 
My name is Chloe Bayer and I work as a Benefits and Information and Referral Specialist at Disability Advocates of Kent County and have worked for various other nonprofit organizations that serve people with disabilities in the Kent County area for the last 20 years. I am married and have three boys ages 11, 14, and 16 . I became involved in DSAWM because my brother Phil, who also lives with me, has Down syndrome and I believe that organizations like DSAWM are crucial to assuring that people with Down syndrome and their families in our community are represented, supported, and provided with opportunities to be their best selves. During my time on the Board, I would like to share both my professional and personal experiences and expertise to be a source of information and assistance to this organization and the families we serve.
My Name is Niurka Diaz. I live in Kentwood with my husband Alberto and my 3 children Allyson (15), Anna (13), and Ethan (12). Anna has Down syndrome and she is the reason we found the amazing people at the DSAWM. When Anna was born we did not know of her diagnosis and we felt a little lost. Thankfully, God sent us an angel in the form of a sweet volunteer at Spectrum Health who brought us a new parent packet from the DSAWM and her grandson was the boy pictured in the front of the packet! She sat with us and listened to a million questions with a smile on her face and that was it for us. This community we found has seen us through highs and lows and we have met the most amazing people along the way. We have been participating in the Association for the past 13 years and I feel honored to be able to serve on the Board and give back in a small way for all we have been given.
When I was about seven years old, my Aunt Jeanie moved into my home after my grandparents could no longer care for her on their own due to multiple health problems. Being so young, I couldn’t quite understand why Jeanie looked a little different, or why she wasn’t living on her own. I was curious in learning what Down syndrome was, and how it would affect our family dynamic. I am very fortunate to have parents who were willing to teach my older sister and I what Down syndrome was, and how it really makes no difference in the way that we treat people.
Throughout middle school and high school, I became heavily involved in working with the special education classrooms and Special Olympics. I loved the idea of the “Inclusion Revolution” that my school implemented, because I wanted my classmates to understand that Down syndrome is not a disability, but rather, it is a unique perspective into life that we get the privilege to explore with our loved ones together. My family has learned so much from Jeanie, probably way more than she will ever learn from us. Jeanie has taught me what patience and kindness is; she has also taught me what resiliency looks like (especially when she wants to eat a big scoop of ice cream or peanut butter- she won’t take ‘no’ for an answer!). She knows how to make people smile through her chattiness, singing, and dancing. Jeanie radiates so much joy, that you can’t help but join in on the fun.
I truly think that Jeanie has helped shape me into the person that I am becoming. She has helped lead me to my career goals, and has taught me simple life lessons that everyone could use. I am so thankful that she came into my life at such a young age, because I was able to learn what love looks like in one of the simplest forms. More than anything, Jeanie has become like a sister, rather than an aunt, to me.
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.
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.
Why do you like to perform like Elvis?
What are your plans/goals for your future as an ETA?
