Empowering Individuals. Supporting Communities.
Once a month on Thursdays (days may vary)
6:15 pm to 8:30 pm
Join the Moms’ Night Out support group for their monthly gatherings! Moms of children with Down syndrome are invited to meet up once a month to connect, share stories, offer support, and just have a fun night out together! Please RSVP to Wendy if you plan to attend!
Once a month on Thursdays (days may vary)
6:15 pm to 8:30 pm
Join the Moms’ Night Out support group for their monthly gatherings! Moms of children with Down syndrome are invited to meet up once a month to connect, share stories, offer support, and just have a fun night out together! Please RSVP to Wendy if you plan to attend!
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.
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.
What are your hobbies?
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.
What do you like to do when you’re not working?
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.
What do you like about being a self-advocate?
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.
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 plexuskatrina@gmail.com.
Dear Ms. DeVos,
I know that you and your family care about children. I live and work in Grand Rapids, Michigan and the contributions of the DeVos family are evident throughout our community. That is why I’m reaching out to you today, one mother to another.
As a parent of a child with Down syndrome and special education advocate, it was difficult to hear you respond to Senator Kain’s questions about the Individuals with Disabilities Education Act (IDEA) with seemingly little understanding of the law that protects my son’s right to an education. Ms. DeVos, I’d like to explain, from my perspective, why so many of us have expressed concern over your response to the Senator’s questions regarding the IDEA. I hope this can be the start of a larger discussion about the benefits and protections for children that the Department of Education oversees through its implementation and enforcement of the IDEA.
The IDEA is the landmark civil rights law that protects the right of America’s children with disabilities to receive an adequate education. Note that I did not write “an exceptional education” as most parents would assume is the right of every child in our public school system. The Endrew F. case before the current Supreme Court is worth a read to see what kind of low bar we are actually talking about protecting. One day, we hope to have an education system that sets the same expectations for all students and provides the necessary supports to achieve that. The IDEA is the foundation for that future and is the only thing that stands between our children and an education with trivial to no benefit.
The law was first enacted as the Education for All Handicapped Children Act of 1975, and ensures access to a free appropriate public education for all disabled children. FAPE, as it is known, was not always the law of the land. Prior to 1975, it is estimated that nearly 1 million children with disabilities were excluded from school (Wright & Wright, 2014). In 1970, US schools educated only one in five students with disabilities and many states had laws that strictly excluded children with disabilities from school (US Department of Education, 2010). Because of the Education for All Handicapped Children Act, which later became the IDEA, schools have had to open their doors to students with disabilities and adhere to the concepts of FAPE, Least Restrictive Environment (LRE), high expectations and inclusion in the general education environment, to the maximum extent appropriate to receive federal funding through the IDEA.
Before this landmark legislation, there was no assumption that students with disabilities would even be allowed in the school building. I can’t imagine being told that my beautiful, funny, compassionate and smart son is not welcome in his neighborhood school. Can you imagine someone telling you that? Today, not only has access been dramatically improved, but so have outcomes. The 2004 reauthorization of the IDEA states,
“Almost 30 years of research and experience has demonstrated that the education of children with disabilities can be made more effective by having high expectations for such children and ensuring their access to the general education curriculum in the regular classroom, to the maximum extent possible, in order to meet developmental goals and, to the maximum extent possible, the challenging expectations that have been established for all children and be prepared to lead productive and independent adult lives, to the maximum extent possible (20USC §1400(c)(5)(A)(i) and (ii)).”
To further cite the department you now lead,
“…significant national progress has been made in ensuring equal access to education for all children with disabilities. During the 2007-08 school year, IDEA mandated programs and services were provided to more than 6 million children and youths with disabilities and more than 320,000 infants and toddlers with disabilities and their families” (US Department of Education, 2010).
In a study of nearly 3,000 preschoolers receiving early intervention through IDEA mandated programs, results indicated that there was an approximate reduction of 16 percent per year in the number of children receiving special education and related services over a two year period because they no longer required special education (US Department of Education, 2010). The IDEA has proven that early intervention works to benefit our most academically vulnerable children and help reduce the economic impact of educating those students throughout their educational career. It is also worth noting that, beyond school, the positive economic impact of a self-sufficient, independent adult in the community far outweighs the cost in the early years to provide special education and related services.
The IDEA also ensures that children with disabilities will be educated in their least restrictive environment (LRE). Before the protections of IDEA came into being, even when students with disabilities were allowed into the school, they were largely educated in segregated settings. This resulted in low expectations and poor outcomes for students with disabilities. There is an ever-growing mountain of research that demonstrates that educating students in the general education environment, with appropriate aids and services, is the most effective location for the majority of students with disabilities. The research shows that including students, to the maximum extent appropriate, in general education classrooms has several benefits – and not just for those with disabilities:
Additionally, the protections of the IDEA extend to charter schools. I understand that you are a strong advocate for school choice and the charter school movement. I wonder how, without the protections of the IDEA, we can ensure equal access to students with disabilities? With the seemingly sole focus of administrators to get and keep student test scores high, it seems there would be a clear disincentive to welcome and educate students with disabilities – particularly those with intellectual disabilities – if the IDEA is not enforced in all schools receiving federal funding. I worry about a post-IDEA, charter school world where my son would be left to linger in a public school that receives little funding due to its low enrollment because all others who could, fled to schools where they were welcomed and my son was denied access because of his disability. The end result would surely be a return to a fully segregated school system for those with disabilities. To be clear, families like mine still must fight battles in our schools, even with the protections of the IDEA. However, without the strict enforcement of the IDEA, we would be setting our kids with disabilities back 40 years.
The IDEA doesn’t address all the barriers to a quality education for our children and it can be difficult to navigate, but it protects the most basic rights of our children to an education and the U.S. Secretary of Education should understand and strongly enforce it. I urge you to reconsider your comments made at your confirmation hearing. Please reach out to the large and welcoming disability community and engage us in this conversation. We want you to be successful, but many of us fear that your lack of experience in the world of special education paired with your advocacy for school of choice, vouchers and charter schools will result in our children being left behind again. It doesn’t have to be that way. Please work with us to ensure that the enforcement of the IDEA remains consistent and strong so that our children may continue to make the academic and social gains that are promised to every child in this country.
Respectfully yours,
Amanda Rhines
US Department of Education. (2010). Thirty-five Years of Progress in Educating Children With Disabilities Through IDEA. Alexandria, VA: ED Pubs, Education Publications Center.
Wagner, M., Newman, L., Cameto, R., & Levine, P. (2006). The Academic Achievement and Functional Performance of Youth with Disbilities: A Report from The National Longitudinal Transition Study-2 (NLTS@). Menlo Park, CA: SRI International.
Waldron, N., Cole, C., & Majd, M. (2001). The academic progress of students across inclusive and traditional settings: A two year Indiana inclusion study. Bloomington, IN: Indiana Institute on Disability & Community.
Wright, P. W., & Wright, P. D. (2014). Special Education Law, 2nd Edition. Harbor House Law Press.
I like to exercise everyday during the week – weekends, too. I like doing sqauts, sit-ups, push-ups, and other strength training things, too. I love going to Shape Up because I like to get in really good shape, get toned really good, and to eat healthy. I love to learn more about nutrition. I also love going to Planet Fitness to work out – it is tons of fun! I also love going to Rapid Runners – I love to do some running!
I want to be a fitness instructor. I am passionate about helping other people and myself to get fit and healthy! I love Tabitha (Shape-Up and Rapid Runners instructor) because she is totally nice and tries to help us get healthier. She is the best fitness teacher ever of my life! I love to have a nice, healthy lifestyle for other people and myself.
160 68th St. SW, Ste. 110
Grand Rapids, MI 49548
Located inside the Special Olympics Michigan Unified Sports & Inclusion Center
616-956-3488
Monday – Thursday | 9:00am – 5:00pm
