2017 was a year of change for the Down Syndrome Association of West Michigan. In late Spring, DSAWM experienced a complete staff turnover. As those with whom many of you were familiar departed for other exciting opportunities, new candidates were carefully sought who would bring passion and commitment to their roles. During this search, members were asked to have patience while program scheduling changed and outreach was limited. Your understanding was greatly appreciated and allowed us to build a new staff of qualified and eager individuals. In July, Jennifer Richards DeVault became the first new DSAWM face as the organization’s Executive Director. Nate Clark joined a few months later as the new Program Director and Victoria Hart followed shortly after in the role of Administrative Assistant (and DSA Press Editor…Hello!). The three of us have learned a lot about DSAWM and the West Michigan Down syndrome community in the short time that we have been here and we are learning more everyday thanks to all of you, our fantastic members, donors, and advocates. We are truly honored to serve such a passionate and giving community. Thank you for continuing to support our mission of promoting public awareness and supporting lifelong opportunities for individuals with Down syndrome and their families. Together, we will make 2018 our best year yet!
Allie Cowden is a self-described busy lady. When she’s not studying for her college class or downhill skiing at Cannonsburg Ski Resort, she splits her time between her CLS program and three jobs. One of those positions is as an Intern here at the Down Syndrome Association of West Michigan. Allie began interning with DSAWM over two years ago and has been a valuable part of the team ever since. DSAWM staff recently sat down with Allie to ask her about her daily routine and living life as a young adult with Down syndrome.
My hobbies are downhill skiing, staying busy, working at Cookie Chicks, Shape-Up class, swimming, reading, dancing, hanging out with my friends, being with my family, and working at the Down Syndrome Association and McDonald’s.
What do you like about working?
I like to work on office work and different tasks at the Down Syndrome Association on Tuesdays. I also work at Cookie Chicks. I make the cookies and I do the fruit bouquets and sell those to the customers there and sometimes we do the deliveries. And I have a business card that says I’m the Production Manager. I go there every Monday. I work at McDonald’s and I clean the lobby-dining area. My favorite job is at Cookie Chicks because we listen to music while we are working. And we also make cookies and fruit bouquets. And it is tons of fun being there. And I like communicating with my coworkers while we are doing something together. Sometimes we make messes and at the end we clean everything and put stuff away where it belongs.
What programs would you like to see offered at the Down Syndrome Association?
Buddy Up tennis, Cooking Capers, Dance class, Shape-Up class, Yoga and Meditation Classes.
Every Monday I have Shape Up class. On Thursdays I have a college class at Noorthoek Academy and I have CLS. We do fun activities in the community like going to the library. We also work on my goals. My goals are cooking, money management, and socializing with friends. We talk about relationship building with others too. On Fridays I do exercises at home and strength-training. I also relax at home. On Sundays I take downhill skiing lessons at Cannonsburg Ski Resort. It’s called CCSA. I‘ve also been selected to be in the 2018 Fashion Show this year. I’m a busy lady.
How has your disability impacted you?
My disability has impacted my life. My friends have disabilities that have impacted their lives too. I love my disability because I have amazing friends who are supporting me and caring for me. They’re kind, caring, loving, and awesome. And we all like being unique, being creative, getting to know each other, collaborating with peers, and doing fun things. I accept my disability and my friends accept their disabilities.
I would like to be a public speaker just like Megan Bomgaars because she is a self-advocate too. She talks about Down syndrome. Her motto is, “Don’t limit me just because I have Down syndrome.” Advocate for yourself and don’t let other people tell you what to do. Let your voice be heard and show the world. Don’t let other people take away your power. Do things by yourself. Figure it out yourself and problem solve it!
What are your dreams and goals?
My goal is to grow as a team at Cookie Chicks. I also like communicating with the owner at the shop, but I need to improve on talking slower and not so fast. We set goals for each other and we also work on our time management. All of us at Cookie Chicks work to achieve our goals. I have different goals like food prep, household chores, daily living skills, community skills, transportation, and health and safety. That’s what I have for goals and me and my CLS are working on those goals. My dream is to move out and get a house with some of my friends. My dream job is to be a veterinarian’s helper and help with the animals, take care of them, play with them, and nurture them.
Attendance at DSAWM Step Up for Down Syndrome has grown over the past several years. In fact, after three consecutive years of record breaking fundraising and crowds well over 1,000 people, the event has become the largest Down syndrome awareness event in Michigan! This created some logistical problems – Step Up had grown too big for its previous location – Millennium Park. While DSAWM staff and Kent County Parks Department collaborated to address issues of gathering space, parking, electrical access, and environmental impact, the event had clearly reached capacity at the park. The Step Up for Down Syndrome Committee spent two years researching and planning to make big changes to Step Up that would allow it to continue to grow.
On Saturday, September 30th, all of that hard work paid off as 1,566 people came together for 2017 Step Up for Down Syndrome at John Ball Zoo. The largest crowd in DSAWM history enjoyed bounce houses, music, games, a puppet show, face painting, and refreshments before walking through the zoo. “It’s amazing to see West Michigan come together and show their support for friends and families with Down syndrome. I’m so excited to be a part of this community!” said Jennifer Richards DeVault, who joined DSAWM in July 2017 as Executive Director.
Step Up for Down Syndrome raised $141,340 for the programs and services provided by Michigan’s largest Down syndrome support organization – Down Syndrome Association of West Michigan. The organization is 32 years old, and this was its 21st walk. The growth in attendance and funds raised is due to community participation. Corporate sponsors donate to cover the expenses for the event, and the rest is raised through thousands of donations collected online and in the community. “Our families are the best ambassadors for Down syndrome. They show West Michigan what life with Down syndrome is like everyday and their friends, and neighbors witness the value of that. They donate because they believe in people with Down syndrome,” said Jennifer. 79 teams were created honoring individuals with Down syndrome. The three teams that raised the most money, Kru’s Crew, Kynsee’s Krew, and Jessica’s Crew won spots for Kru, Kynsee and Jessica on a Down Syndrome Awareness Month billboard. The largest team, Kynsee’s Crew, also won a private screening of The Nut Job 2 at Celebration Cinema for their entire team.
There were several reasons DSAWM chose the zoo. Besides additional space, the zoo has a central location that is accessible by mass transit, and allows out-of-towners to make a day of it by enjoying the zoo’s exhibits and activities, as well as enjoying downtown Grand Rapids celebrated restaurants, museums, and Art Prize venues. It also adds appeal to families who may not have a close connection to Down syndrome. “A major goal of Step Up for Down Syndrome is to draw in the community-at-large and introduce them to their neighbors with Down syndrome and share with them their potential and the contributions they are making in West Michigan,” said DSAWM member Meredith Lange.
Click here to view pictures of 2017 Step Up for Down Syndrome.
Building on the idea of creating a unique, entertaining event celebrating Down syndrome, this year’s DSAWM Step Up for Down Syndrome will be held at Fifth Third Ballpark on Saturday, September 22, 2018 and will have a sports theme.
Erica Bode, Ada
“I want to adopt a child,” I told my husband over the phone while running errands. “I want to adopt a child with Down syndrome. Actually, there is this beautiful boy on the Reece’s Rainbow adoption site who I am in love with.”
I have replayed this conversation many times since adopting our sweet Armenian, Sam. Sam was born in Armenia, given up at birth, and lived in an orphanage for four years before we brought him home in 2016.
Before we started the adoption process I knew nothing about Down syndrome. My heart always gravitated towards the beautiful Down syndrome children with almond eyes, chubby fingers, and a gap between the big toe and the rest of the toes. I knew nothing more about Down syndrome then what meets the eye. I knew nothing about raising a child with special needs. And I knew nothing about what it meant to become a parent of a special needs child. And here’s a little secret I’ll share with you – after having Sam for almost two years I am still learning what all this means.
My husband and I had great aspirations of bringing Sam home and changing the life of this little boy. But we never realized just how much we would change. We never realized how much we needed to change to raise this little boy. Sam has made great progress since April 2016, but our parenting had to change to help him be successful. We soon realized that we needed a team of people to help us. We couldn’t do it alone. This new parenting style required us to be vulnerable, humble, and intentional. We surrounded ourselves with some great therapists, enlisted family to provide us with much needed respite, and thanked our lucky stars for some amazing teachers and teaching staff who loved our kid even when he was hard to love. And lastly, we sought out an adoption counselor who helped change our mindset on what it means to be a parent, an adoptive parent, and a special needs parent to a boy who didn’t ask for any of this.
We are still learning, we don’t have all the answers. But the great thing is – we don’t have to. We are grateful for the other parents who share their stories and life lessons. We can only hope to one day pay it forward to the couple who is considering adopting a beautiful child with Down syndrome.
Photo credit: Sydney Kelley Photography
Emily Perton, Holland
Recently I was taking a walk through Hope College’s campus. As I walked, I came across a mentor from the Ready for Life program. We talked about how she had been listening to the Hope College radio station and heard one of the Ready for Life students broadcasting his weekly radio show. She asked me about a graduate from last year, and I had the pleasure of sharing how she was employed and living with some other graduates of Ready for Life. We parted ways, and I kept walking. I soon encountered one of the Ready for Life students hurrying to get to her dance class. I walked on and came across a Hope College professor who shared he was eager for basketball season to get started and how thankful he was to have one of the Ready for Life guys help out with the team. I ended my walk at the Ready for Life classroom where ten Ready for Life students and five mentors were playing board games on a Friday afternoon. In my ten-minute walk across campus, I was able to see the effect of the Ready or Life program!
Ready for Life Academy provides an inclusive college experience for adults with intellectual disabilities at both Hope and Calvin College. The program was established to provide an inclusive transition option for students ages 18-26. This Spring we have 12 students at Hope College and 5 students at Calvin College. The students audit two college classes each semester. They also take life-skill/transition classes taught by a certified special education teacher. They volunteer on campus or out in the community starting their sophomore year in the 4-year program. On top of the educational experience, the students also gain social skills through relationships with mentors on campus. Each semester between the two campuses we have 30-40 college students who mentor the Ready for Life students. The students engage in many different clubs and activities on the campus. The program gives individuals the opportunity to receive a full college experience that they may otherwise have missed out on.
At Ready for Life we desire to give students a place where they belong. We want them to know that they make a difference and that when they are absent, we miss them. Once the students feel connected to the college community, they believe in themselves and learn how to become independent adults. Throughout their four years in the program they gain the skills necessary to achieve the two goals of the Ready for Life: independent living and paid employment.
As a mother of two young boys with Down syndrome and the Executive Director of Ready for Life, I desire for my sons to have an enriched life with every opportunity available to them. I must admit when we adopted our oldest son with Down syndrome we didn’t think about him attending college. I am not sure if we thought much past kindergarten when he was twenty-one months. But now as he, nine years old, and his brother, six years old, are attending school with their peers and experiencing inclusion, I envision them experiencing college life following high school. The requirements needed to get into the Ready for Life program are now the long-term goals we share at their IEP meetings. Our boys see themselves on a college track. Nico is determined to go to Calvin and Gus is determined to go to Hope – apparently, we will be a house divided.
If you are interested in learning more about your child’s future as a college student, check out the Ready for Life program at rflnetwork.org or come to our Visit Day at Calvin College on Friday, March 9, 2018.
Katrina Curtis, Byron Center
When my daughter Cora was two years old she was still struggling with lack of physical strength, muscle coordination, and core muscle use. She was receiving PT and OT, but we were both frustrated with the results. Cora was doing the same thing over and over at every visit with little improvement. It didn’t help that I would diligently work with her between those therapy sessions on the homework the therapists gave me. I was being a great mama and helping my child improve, right? YES, I was being a good mama, but I was also boring my daughter to the point of frustrated tears on both our parts. I was so focused on her achieving the goals that were given to her that I totally ignored what was literally right in front of my face.
You see, I have been a professional horse trainer for over 30 years and with the birth of my daughter Cora I had taken a step back and cut down on the number of clients and horses that I had in training at my facility every month. Don’t get me wrong, I still rode and worked with others, but Cora was the new priority. She would often be in the in the house during most of my horse related sessions. Once she was strong enough, I brought her out to a play pen near the arena. It was seeing Cora light up while she watched the horses that gave me the idea to get her ON a horse.
You’d think that having her on a horse would have been my first inclination. The adage is true though, that we often don’t see what is right in front of our eyes. Cora started riding a horse after she received the required neck x-ray from the pediatrician. I felt like a failure and a success at the same time. A failure that I hadn’t tried this sooner, and a success because I finally did get Cora on a horse.
Long story short – Cora’s physical strength and core strength increased with the use of a four-legged friend that whinnies. She would ride at a walk gait with a side walker and I would lead the horse while giving Cora little tasks to complete. For half an hour at a time, life was filled with laughter, a child, and a walking horse. I immediately saw improvement in Cora’s strength and coordination.
How? It’s called Equine Hippotherapy and here’s how it works. A horse has a walking gait which mimics a human’s walking gait. As the horse walks and the child rides the horse, the movement that works through the body of the child is the same as the child physically walking. The brain does not process that the child is riding a horse. It instead processes the movements as physically walking and therefore the muscles respond in the same way. Cora is 6 years old now and is still riding horses. The physical strength and coordination this kind of play offers has been wonderful for Cora’s progress.
One of the greatest blessings that this journey with Down syndrome continues to teach me is to look outside of the box for the answers that Cora needs. After all, Cora doesn’t do anything the usual way. She traditionally finds her own way and achieves a goal in her own time. Another thing this journey has taught me: Cora will achieve any task handed to her if given the respect to achieve it in her own time.
If you are stuck in a rut with your kiddo’s therapy, think outside of the box. A task usually has at least five ways of getting it done. Society has taught us that there are only two ways to do something – the right way and the wrong way. I encourage you to shake that theory up a little bit just like our kiddos do daily. That extra chromosome they were born with? It comes with a “thinking outside of the box”, “watch while I do it upside down and sideways” genetic makeup. It’s a positive attribute in a stringent world.
Down syndrome is a blessing which allows us parents many opportunities to walk along side our kiddos and ENJOY life – one moment at a time. But, we should remain open to the unseen blessing that will be delivered in a different way. And if a horse is involved, even better!
Katrina Curtis and her husband Scott live in Byron Center, Michigan on a few acres they call We-N-Us Ranch. Their slogan is “Where Courageous Kids and Special Horses rub elbows”. If you would like more information on Equine Hippotherapy and getting your child involved, you may contact Katrina on her Facebook page or email her at firstname.lastname@example.org.