My son Kaiden was born into this world eight and half years ago. On that life-altering day in June I was not prepared for the whirlwind of emotions that was about to take over. The delightful feeling of being a mother for the first time; the devastation of what I at first thought was a less than perfect baby when I heard the words “Down syndrome”; and the anxiety of what the future held for my family, especially my newborn.
Looking back, I wish I had been more thankful for what I was about to experience and how my life was going to change for the better. My son has introduced me to an amazing world that I didn’t even know existed.
The Perks of Being an Advocate
When Kaiden turned one, I became involved with the Down Syndrome Association of Greater Toledo (DSAGT). DSAGT introduced me to many families that were also blessed by someone with Down syndrome. Some of these people would end up becoming my friends, mentors and inspirations. They taught me so much about Down syndrome, advocacy, inclusion, health, and love.
Through DSAGT, I discovered my passion for being an advocate for Kaiden, and ultimately, all people living with Down syndrome. I soon became president of DSAGT, a role that has presented so many unbelievable lessons and opportunities.
As president, I have met and worked with hundreds of people from around the country in leadership roles for other Down syndrome affiliates. I have participated in numerous advocacy initiatives at the local, state and national levels. I have even met members of Congress, including Marcy Kaptur, Cathy McMorris Rodgers, Pete Sessions, Sherrod Brown, John Kasich, and John Boehner.
Learning from Tyler
Some of the most inspiring people I have met along this journey have been area adults living with Down syndrome. Through my work, I’ve befriended many individuals who live full, meaningful lives, no matter their situation or disability. They’ve given me assurance that Kaiden can do anything he wants to do.
One of my favorite achievements as president of DSAGT was recruiting a self-advocate to be on the board of directors. I chose Tyler Wiley, a 22-year-old young man living with Down syndrome. He is an amazing self-advocate, community member, artist, big brother, and son.
Tyler works at Shared Lives Studio as an artist, is a DSAGT board member, a past Lucas County Board of Developmental Disabilities Self-Advocate of the Year, a dedicated Toledo Public Schools supporter, and an all-around amazing person. Working with Tyler has taught me more than any textbook ever could. He inspires me every day to do what is best for all people.
What They Don’t Tell You About a Down Syndrome Diagnosis
One of my favorite things about being Kaiden’s mom is that he teaches me something new every day. I often set goals for my son, and he is constantly exceeding them. This isn’t something I would have believed about children with disabilities before Kaiden came into my life.
My husband and I have raised Kaiden exactly the same way we have raised our other two children. We expect him to be kind and polite, responsible for his choices and an equal member of the family. We want Kaiden to be happy, live as independently as possible, be able to communicate, love others, be accepted, and accept others for who they are.
If I could give one piece of advice to a parent that has just received a Down syndrome diagnosis, it would be this: Your journey has just begun. It might seem different than you originally planned, but embrace it and be prepared for your world to be touched by so many people that you otherwise would never meet. You are about to embark on an adventure of a lifetime.
Saturday, March 21 is World Down Syndrome Day, the perfect opportunity to learn more about the condition and get involved. For more information about local events and efforts, please visit DSAGT’s site.
Sherri Rogers is the Patient and Family Care specialist at ProMedica Toledo Children’s Hospital. She is a proud wife and mother of three beautiful redheads, Kaiden, Keegan and Kayleigh. Always the biggest advocate for her son, Sherri is the President of the Down Syndrome Association of Greater Toledo. Sherri and her family are subjects in Beyond the Frame, a photo installation on permanent display at ProMedica Toledo Children’s Hospital.