In honor of Down Syndrome Awareness Day, I asked one of our faculty if she would be willing to share her personal experiences as a mother of a child with down syndrome – I am so glad I did! I hope Devon’s sweet story inspires you as it inspired me.
Devon Mellin has been a Special Education teacher to high school-aged students at the Barber National Institute for the past 7 years. She has been married for 15 years to her high school sweetheart, Garrett, and is the mother of three delightful, energetic and amazing children: Broc (11 years old), Addyson (9 years old) and Harper (5 years old) and the newest addition, Chloe (a 1 year old boxer). She graduated from Edinboro University with a degree in Elementary and Special Education, and has been teaching for nearly 15 years.
My husband, Garrett, and I had our middle child in 2007. We welcomed to the world a baby girl named Addyson Mae. As any parent, we knew our lives would change, but we were not expecting the news we received that day in the hospital. We had chosen not to participate in any of the prenatal tests beforehand. We knew we would love our baby unconditionally. Addy, as we call her, was born with an extra 21st chromosome – she had been diagnosed with Down Syndrome (DS). Each year, 1 of every 700 babies is born with DS in the United States. Many people may not know that there are three types of Down Syndrome: Standard Trisomy 21, Translocation, and Mosaicism. Addy was diagnosed with Trisomy 21. With this type of DS, there is an extra copy of chromosome 21 in every cell. 95% of babies born with DS are diagnosed with Standard Trisomy 21 Down Syndrome.
We spent the first three years of Addy’s life working with therapists through the Barber National Institute and researching everything we could about Down Syndrome to help Addy accomplish her milestones. When I look back at those days, I have to laugh. She was so hard to motivate during her therapy sessions… until I pulled out the ice cream! Addy did not really care for toys, but she would do anything for ice cream!! Addy flew through her milestones with hard work from Addy and dedication from me and other family members working with her on her daily exercises.
Addy is currently in 4th grade at Fairview Elementary School. She participates in a regular education classroom most of her day with the support of a paraprofessional. She is not a fan of math. That Down Syndrome stubbornness comes out for sure, but these days she’s a little easier to motivate with high fives, clapping and praise. Her love of books and reading has helped her be successful in Reading classes at school. Addy reads anything she can get her hands on and is reading on grade level. Addy loves school and loves learning new concepts. My husband and I are very fortunate that she is so successful in her education and loves to be at school so much. At the end of this year, another milestone will take place for Addy as she leaves the elementary school and heads off to middle school, with all new staff to attend to her. Is it scary? I will not lie, Garrett and I are frightened for this change, but at the same time we have confidence in Addy that she will fight hard and succeed.
As a family, we thought it was important to get Addy involved with community based programs just as we have done with our other two children. She participated in dance classes through the Dance Vibe Studio since she was four years old, dancing hip hop and ballet. She has even competed at large dance shows doing solo ballerina performances, at the Bayhawk’s half time shows and other community dance competitions. She has no fear! Addy also played soccer for three years – until she decided there was way too much running involved. This year Addy has chosen to start gymnastics. She had her first show recently and has shown a love for the sport.
As a parent of a child with Down Syndrome, it is my mission to educate others about the accomplishments and abilities of children with Down Syndrome. These children have a potential to be successful when the right support system is put into place. These children do have futures! Unfortunately, at the moment 90% of babies diagnosed prenatally with Down Syndrome in the United States are aborted. WHY!? It is one of my goals and the goal of our local Down Syndrome Group, LEADS, (Lake Erie Area Down Syndrome group) to educate pregnant mothers, OBYGYN offices and hospital personnel about the wonderful things a baby with Down syndrome can bring to parents, family members and the community. Our group also sets up informative meetings and playdates for our children to work on interacting and social situations. Hearing the diagnosis of DS can be scary, but at the same time it is extremely rewarding. We believe our motto: EDUCATE. ADVOCATE. ENJOY. My daughter is a blessing to our family, and we would not be the same without her sense of humor, stubbornness and unconditional love.
Happy Down Syndrome Awareness Day!