Tag Archives: Down Syndrome Association of West Michigan

Stories from Down Syndrome Association of West Michigan: Bringing Home Sam

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Photo credit: Sydney Kelley Photography

By 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 than 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.

 

Reprinted with permission from Down Syndrome Association of West Michigan.

Stories from Down Syndrome Association of West Michigan: An inclusive college experience

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By Emily Perton, Executive Director, Ready For Life

 

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 the Ready or Life program has!

 

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 2 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 are also gaining social skills through relationships with mentors on campus. Each semester between the 2 campus’ 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 where they are having an opportunity to receive the college experience.

 

At Ready For Life we desire to give students a place where they belong. We want them to know they make a difference and that when they are absent, we miss them. Once the students feel connected to the college community, they can 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 program: 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 them 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 sign-up to come to our “Visit Day” at Calvin College on Friday, March 9, 2018, at rflnetwork.org/events.

 

Reprinted with permission from Down Syndrome Association of West Michigan

Get Down with Down Syndrome at the ‘Rock Your Socks Dance’ March 21

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Photo supplied

By Victoria Hart, Down Syndrome Association of West Michigan

 

Myth: All people with Down syndrome have a severe cognitive disability and cannot be active members of society.

 

Fact: Many people believe this. The misconception that Down syndrome affects all those with the condition identically and that, as a result, these individuals are unable to live independently or lead successful lives could not be further from the truth. At the Down Syndrome Association of West Michigan (DSAWM) we work every day to ensure that myth does not overshadow truth. Educating West Michigan about the condition is a critical part of advocacy.

 

So, what is Down syndrome? Down syndrome is a genetic condition in which an individual has three, rather than two, copies of the 21st chromosome. It is the most commonly occurring chromosomal abnormality and occurs in one of approximately every 700 births. Those with Down syndrome often experience cognitive delays and have several physical identifiers including low muscle tone, small stature, and an upward slant to the eyes.

 

While it is true that some people with Down syndrome have severe cognitive delays, for most the effect is usually mild to moderate. Many individuals are enrolled in general education programs, attend college, marry, and have jobs. Just ask our intern Allie! Allie is 25 years old and in addition to working with our organization, has two other jobs, is taking a college course, and spends her weekends skiing.

 

It is important to remember that each person with Down syndrome is unique. When we limit our understanding of the condition, we limit the opportunities for those affected. Quality education programs, a stimulating home environment, good health care, and positive support from family, friends, and the community help people with Down syndrome to develop their full potential and lead fulfilling lives.

 

World Down Syndrome Day is March 21st, in honor of the third copy of the 21st chromosome. On this day, individuals with Down syndrome and advocates across the world raise public awareness and advocate for inclusion with community events and conferences with lawmakers. And don’t be surprised if you see people wearing brightly colored or mismatched socks on World Down Syndrome Day. The #lotsofsocks campaign encourages participants to wear their funkiest socks to get people talking and asking questions about Down syndrome.

 

At DSAWM we can’t think of a better way to celebrate our favorite extra-chromosomed friends on World Down Syndrome Day than by throwing a party! On March 21st we will be hosting a ‘70s themed Rock Your Socks Dance to raise awareness and celebrate our loved ones with Down syndrome. DSAWM staff, members, family, and friends will be boogieing the night away with snacks, crafts, a photo booth, costume contest, and, of course, dancing!

 

Join us at the Masonic Center in downtown Grand Rapids at 6pm for the grooviest get-down in town. Check out the DSAWM Facebook page for more details and to learn more about our organization and the fantastic community of eager and inspiring individuals whom we serve.

 

For more information, please visit the following links.

 

Down Syndrome Association of West Michigan: Dsawm.org

National Down Syndrome Society: Ndss.org

World Down Syndrome Day: Worlddownsyndromeday.org

Stories from Down Syndrome Association of West Michigan: Thinking Outside of the Box

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Katrina Curtis and her daughter, Cora

By 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.

 

Cora on horseback

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.

 

Reprinted with permission from Down Syndrome Association of West Michigan.