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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.

Staff Spotlight: Jennifer DeVault

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

 

My Story of Grief and Transformation

Lara Kitts

A couple of years ago I began a journey of getting to know my soul and healing a lot of wounds. In that process, I realized that we, as parents of kids with special needs, carry chronic grief that other parents can’t relate to.

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 Welcome to Holland poem and learns to change the dreams they had for their child.

There is so much stress and so much grief in this phase. Every time our younger girls passed Taylor with a milestone, my heart ached with grief for her all over again. And then, I’d feel guilty for tainting their gains with grief…for letting my brain overshadow them with Taylor yet again. As if it wasn’t enough that her needs came first with everything every day. This was, of course, an internal battle because there is too much shame around admitting this or saying it out loud to other people. I was grateful to have an involved husband, three beautiful children, and a life full of love. What I didn’t know then is that grief and gratitude can live side-by-side. So, I hid the grief and showed the world my gratitude.

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”.

Then Taylor hit puberty. And everything was off the table from that point forward. Puberty wrecked her. And in the process, it wrecked me too. She became so aggressive and dysregulated. She was ready to pop at any given moment and we began living on eggshells again. We lived in that place of continual high anxiety. The place where you never know if she will sleep or be up all night. Unsure if she’ll give you a kiss or claw your eyes out. Not knowing if she’s in pain or exhausted and just crabby, with no idea what to do to help her. It’s an awful place to live day after day. This is a type of grief that is unique to special needs parents. This grief isn’t easily identified. It is often mislabeled as “stress”. This is because it happens through normal, everyday activities. It’s a part of our common daily lives. It’s the little things that remind us we are different, that our child is different. It’s the reminders that their life isn’t like the lives of other kids their age. Things that are stressful, so we miss the grief. Things like how hard it is to get your child’s teeth brushed well. The focus is on the difficulty of the task, which is stressful. But the result is being left with a feeling of unidentified grief that you and your child have to go through this when others don’t.

After years of living on eggshells with chronic stress and grief, one day I just couldn’t do it anymore. I was trying to change Taylor’s dirty diaper. She was aggressive and resisting me. This was very commonplace and so frustrating. I was losing all my patience with her. So, I left her safely where she was and went into the kitchen sobbing. At this time in my life, my sister had died the year before and I was at the depths of depression and the height of anxiety. So, on this day when Taylor got aggressive with me, I couldn’t handle it at all. I left her in her dirty diaper and crumpled into a heap on my kitchen floor sobbing. Sadly, this scene was also commonplace. But the difference on this day was that I couldn’t get up. I had always gotten up before. I always got up. But not this time. I called my husband, choking out the words through sobs. He came home from work, scooped me up off the floor and carried me to bed. The grief over losing my sister had cracked wide open grief I didn’t know I had over Taylor.

A couple of months later, I went to a place in New Mexico that specializes in grief. I did a lot of research and went to the ONLY place in the country that could give me what I needed. I spent two weeks there, being nurtured and pampered, working through my grief and healing. I left there knowing that I had to make a lifestyle change if there was any hope to continue to feel the level of peace I felt then. Because even way before I got so low, I was a stressed-out mess. My back was knotted up so tight it felt like a brick wall, I couldn’t focus, I couldn’t cope with Taylor’s hormonal aggression.

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.

And now that I’m on the other side, I have more peace and calm within me. I do specific things every day for myself – and these are little things, these are not big things. But I do them every day, for me. I finally see the truth in the clichés about how you have to take care of yourself to best take care of others…how you have to fill your cup before you can pour into your children. Those phrases annoyed me before because there was never time for myself. Never. But now I know first-hand that as a mom of a kid with special needs, you can make yourself a priority. You can take care of yourself. You can thrive and feel good. And now I want to give that kind of support to other special needs parents.  Because I know it is needed so desperately.

I have several resources and supports available to you. I hope you’ll check them out and connect with me.

  • 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 larakitts.com/contact-1.
  • The doors to my signature program, Flight Club, are open! I only let in new members a handful of times a year so don’t miss your chance. Flight Club is a circle of new friends who understand you and your life as a special needs parent. It includes:
    • monthly guest self-care experts,
    • live implementation sessions so you can be successful at integrating the new technique into your life,
    • easy, actionable assignments for follow through.

In Flight Club, you emerge from the hard work, transformed, just as the butterfly from her chrysalis. The doors will close for membership on February 28th, just in time to join in on our March self-care theme of creativity. Register at larakitts.com/programs.

  • Follow me on social media for ongoing information and support on parenting a child with special needs and self-care: on Facebook @larakittsllc; on Instagram @lara.kitts.
  • Subscribe to my blog so you don’t miss future articles on easy self-care techniques and parenting a child with special needs. Go to larakitts.com/blog.
  • Listen and subscribe to my podcast, Changing Your Dreams: Parenting a Child with Special Needs. I interview other parents who relate their stories of grief and transformation. I also talk to field experts who can help us take care of ourselves. You can find it on Spotify, Apple, or wherever you get your podcasts.

Endless Possibilities Await

2020 presented Down syndrome affiliates across the world with many challenges to overcome, and the Down Syndrome Association of West Michigan (DSAWM) was no exception. Our organization serves 350 families across 12 counties in West Michigan. In addition to support services and advocacy, we also operate over 20 programs for members from birth to adulthood. We do this all with only 3 full-time staff members and several generous volunteers.

When concerns about covid-19 first surfaced in March 2020, we were about a week away from one of our biggest events of the year—our World Down Syndrome Day Dance. The decision to cancel this big community celebration was difficult, but we were certain that we would bring everyone together again at our Member Picnic that summer. …Obviously, covid had other plans. While we were able to safely re-introduce some socially-distanced, in-person programs in late summer, by the fall we were once again back in lockdown.

Fortunately, ours is a community well-versed in adaptability. By April 2020, we were already transitioning our most popular programs to a virtual format. Doing so not only kept our members engaged and gave them a means by which to socialize with friends, but also created greater accessibility for members in outlying counties who were often unable to attend our programs due to the long commute.

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.

As we continue to navigate the impact of covid-19, DSAWM remains committed to our mission: promoting public awareness and supporting lifelong opportunities for individuals with Down syndrome and their families. We have learned a lot over this past year, both in practice and from the feedback of our members. Some adaptations created in response to covid-19 will remain permanent changes to our operations. Virtual programming, for example, is something we plan to continue moving forward in response to the need for greater accessibility. We are also currently identifying ways that we can better serve underrepresented populations in our community. That means building better equity initiatives, improving outreach to POC and minority-focused community partners, and incorporating more inclusive and diverse programming.

DSAWM is always on the move to improve and the one benefit of the pandemic is that it has given us the opportunity to slow down a bit and identify ways that we can be better. We are so fortunate to serve a community that is eager to grow with us. Endless possibilities await!

We Have to Make the Best of This

Molly VandeWater

Like all of us, DSAWM Intern and Self-Advocate Molly has been greatly impacted by the covid-19 pandemic. Molly is social butterfly. If she’s not filming videos or being interviewed by the local news for DSAWM, you will find her performing around town with the Living Light Dance Company, hosting a sleepover for her “second sisters,” or exploring Grand Rapids with her CLS aide Jess. As covid-19 has taken each of these activities from her, Molly’s daily routine has drastically changed. Understandably, this has caused her to feel sadness, grief, frustration, and even anger. But Molly is a determined young woman. In adjusting to her new routine, she has discovered new ways to interact with loved ones and participate in her favorite activities. We sat down with Molly (over Zoom, of course) earlier this month to check-in and ask her how she’s continuing to adjust to change.

How has covid-19 impacted your daily activities?
Covid has really changed everything for me. I can’t go to parties or sleepovers. I can’t go to dance, Shape Up, book club, Cooking Capers, or Lift. I still do some of my classes online, but I can’t hug, hold hands, or share snacks with my friends.

How has it impacted how you’re feeling?
I miss seeing all of my friends. I miss seeing my family all the time. I feel sad and mad sometimes and I don’t like to wear a mask. I’m sick of all this. I want to have a party.

How have you stayed connected with family and friends while practicing social distancing?
I see my friends on House Party, FaceTime, and at Zoom classes. We call each other a lot. My brothers, sister, sister-in-law, niece, and nephews still come over and I can hug them. I hang out with my aide, Jess, and do fun things too.

What advice would you give to other people who are struggling with changes to their routine?
They should join Zoom classes with me and call me! I would say it’s okay, you’re going to be alright. We have to make the best of this and we’ll be back together soon.

What are you doing to keep yourself busy and stay positive?
I do lots of art, watch movies, yoga, walk, go sledding, and do other things outside. I talk to my friends and we have nice, wonderful, positive conversations. Today I played with my twin nephews!

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