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

 

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.

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!

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!