November is National Diabetes Month and it has special significance to me. It’s been 8 years since I heard our pediatrician tell me “Your son has Type 1 Diabetes” (T1D). This year, my son became an adult. I’m so proud of his accomplishments and I hope that I can inspire other parents. I want them to be able to encourage their kids to be independent, and able to manage their disease into adulthood.
Each year over 13,000 new cases of T1D are diagnosed in children and teenagers, making it one of the most common chronic diseases in American children (Joselyn Diabetes Center).
When Tyler was diagnosed, I didn’t know much about T1D, even though I have 2 siblings that have been living with T1D for decades. I felt guilty and ashamed not being able to predict or foresee his destiny, and embarrassed for not being up to date with the latest research and technology.
I thought that maybe I could make it up to him and give him the courage to not let this disease stop him by encouraging him to talk with others about T1D. I thought it would help him if he stepped out of his comfort zone and educated others about his disease.
I had my reservations considering how the Millennial Generation communicates. Ever witness teenagers sitting together on their smart phones, tweeting, texting, pinning, all without mumbling a word to their friends? I can’t figure out what’s so smart about that. I wonder if that’s communication? I call it No-munication! If I want to get through to these teens, I need to find a way to identify with the new “Me” generation. Is there new technology to help parents inspire their kids to avoid low health literacy? Is there an App I can download?
A finger prick of blood onto a test strip would have a meter speaking your results in 5 seconds, a far cry from the method years ago that I witnessed waiting minutes to read the results from a urine test for my siblings. But has technology provided the means to communicate enough to prepare a newly diagnosed child with ways to acclimate to their new life style?
It was back to the basics with Tyler, and we developed a 4-step approach for communicating about his diabetes.The four steps include setting goals, describing the situations and challenges that get in the way, thinking about each other’s perspectives, and agreeing on a compromise. Through this new approach, we found a way to break through the communication barrier. The daily stresses and concerns about our new lifestyle became easier one calamity at a time. Tyler became motivated by his latest mantra, “Find a Way to Say Yes”. Outfitted with his backpack stuffed with test strips, alcohol swabs, lancets, meter, glucose tabs, juice boxes and syringes, he was on his way to becoming an inspiration.
Through the years of bike riding and bowling fundraisers, newspaper articles, radio interviews, television appearances, public speaking events and helping start a non-profit organization, Tyler has immersed himself in communicating his experiences with T1D. The knowledge and skills that he has gained for the past 8 year have culminated in an opportunity for him to lead support groups around the country, sponsored by a major pharmaceutical company and presenting an unbranded presentation to other parents and their T1D children. The 4-step approach has worked successfully for him, as well as communicating with parents, friends, doctors, caregivers, clergy, educators, coaches, and industry professionals about his life with T1D.
Finger pokes, counting carbohydrates and taking insulin is just the part of T1D that you see. I’m glad I found a way to explain what you don’t see. That’s what I call communication!