Inspiring, Uplifting and Informative INNERviews
INNERview with Amy Maiorano
Amy Maiorano is a self-advocate who was born with a rare genetic condition known as the DiGeorge Syndrome also known as 22q11.2 deletion syndrome. Amy is 19 years old and recently graduated from high school. She is compassionate about public speaking and raising awareness about DiGeorge Syndrome. She recently participated in a clinical study at Children’s Hospital of Philadelphia in hopes of assisting with research to find out more about her genetic condition. In November of 2013, Amy spoke at a TED conference in Ft. Lauderdale, FL. This March, Amy will speak at the State of the County Address in her hometown. Amy currently works as a teacher’s assistant and has dreams of being an author. Visit Amy’s website at http://www.amysworld.me
YVONNE PIERRE: As a parent of a child with Down syndrome, I’ve spoken with other parents and the question we often ask ourselves is, “What is the best way to tell our children about their disability?” Amy, at what age did you learn about 22q11.2 deletion syndrome and how were you informed?
AMY MAIORANO: I was told about my syndrome when I was about 10 years old. My mom explained to me that it was the reason I went to the doctor so much more than either of my sisters and why I had emotional outbursts. At that time I was having a lot of anxiety and even though I didn’t understand, they felt it was time to start talking to me about my disorder.
YVONNE: What is 22q11.2 deletion syndrome?
AMY: The 22q11.2 deletion syndrome is also known as DiGeorge Syndrome and VCFS. It is a genetic difference in the 22nd chromosome. It affects about 1 out of every 4000 births. The deletion is the main cause of medical and mental challenges for people with this disorder, but everyone has different challenges. There are over 88 different characteristics of this disorder that includes heart disease, cleft pallet, and immune issues. Every individual has different characteristics – no two cases are the same.
YVONNE: What inspired you to be a self-advocate?
AMY: I was inspired to be a self-advocate because I wanted to let people know that there was a reason for my learning challenges and social awkwardness. It is important to me for people to know that nothing caused this disorder – I was born with it. As I raised awareness for myself, I began to help my friends discover their differences and advocate for themselves.
YVONNE: In general, what type of changes have you witnessed over the years in the disabled community?
AMY: Being that I have only recently graduated high school, I have not had the opportunity yet to be out in the “disabled community”. I was recently approved for services including para-transportation and social networking which I hope to begin soon. The one change that I do know of is that my freshman year in high school, the special education department began working with an outside agency to help students in special education get volunteer jobs in the community and this has been working great ever since.
YVONNE: Although the community has come a long way, what more do you feel needs to be done?
AMY: I feel that there should be more social opportunities that are easily accessible to the disabled community. A lot of us feel lonely at times and it would be nice to be able to go somewhere to socialize with people like myself.
YVONNE: What inspired you to become a teacher’s assistant?
AMY: Through working with the school work program, I had several retail experiences and knew that I did not want to continue to work in a store. The program finally placed me in the daycare as a different option and I immediately felt like I clicked with my co-workers and really enjoyed working with the kids. I love going to work every day.
YVONNE: It takes courage for someone to act on what they are passionate about. Where does your courage come from?
AMY: Things have always been hard for me. I always had to keep trying harder than any of my friends or sisters at anything I’ve done. My courage comes from accepting and embracing my differences. I have learned over a long time not to be ashamed of myself and to instead educate people on the differences of others in their own community.
YVONNE: How can parents of children with disabilities be more empowering to their child’s growth and self-esteem?
AMY: Parents can help their children’s self-esteem by teaching them about their disability and help them find whatever their dreams are. Love them for who they are.
YVONNE: Before we go, what advice would you like to leave with parents?
AMY: Let your kids know that you love them and you have their backs no matter what!
YVONNE: What is the overall message you’d like to leave us with?
AMY: Be kind to others, don’t judge or talk badly of people, and don’t be afraid to laugh at yourself! Always be true to yourself.