Since we are winding down from our trip to Washington D.C. for the 2015 JDRF Children’s Congress, I thought it appropriate to share a section of the book about advocacy. Our advocacy efforts wax and wane over the years. Sometimes we have a lot of time and effort and motivation to advocate. And sometimes we are so busy with our regular lives that advocacy takes a back seat. Here is the section called “Advocacy” from the chapter “Getting Involved.”
For me, advocacy takes on two meanings when it comes to diabetes. First, as parents, we advocate for our children, whether it’s making sure a 504 plan meets our child’s needs at school, or helping to push diabetes-related legislation, such as the Care of Students with Diabetes Act in Illinois, into law. These are acts we do on behalf of our children to better their lives. The second advocacy role involves educating and spreading the word. This might be done through interviews with local media about the lives of children with diabetes, giving a talk at a PTA meeting or teacher in-service about the signs and symptoms of diabetes to help people identify children exhibiting early symptoms, or meeting with your congressional representative through programs such as the JDRF’s Promise to Remember Me campaign.
Advocacy can help your child directly by making sure he or she is safe at school, or can be for the greater good by encouraging politicians to continue federal spending on research and programs benefiting those living with diabetes. Part of advocacy is identifying the key issues and deciding which ones appeal to you personally. JDRF’s advocacy site is a good place to start (advocacy.jdrf.org).
Perhaps one of these topics piques your interest:
- Special Diabetes Program (SDP)
- Healthcare Reform
- Artificial Pancreas Project
- Stem Cell Research
When you’ve identified an area where you might become an advocate, it’s time to read up, do some research, and find other people championing the same cause. As Margaret Mead said, “Never underestimate the power of a small group of committed people to change the world. In fact, it is the only thing that ever has.”
And advocacy isn’t just for grown-ups. Children can be very powerful advocates, too, both effecting change and educating. I joke that Q is “loud and proud” about her medical condition. She never passes up an opportunity to tell people about her diabetes. I often recall the time when she was about four and we were in the cafe at the library. She finished eating the snack we had brought and went over to talk with an elderly couple at another table. When her brother finished his snack, and we were ready to return to the children’s section, I went over to the three-some. The octogenarian told me that he and Q were “talking diabetes,” as he was type 2. He and Q had been conversing about checking blood sugar!
During a recent trip to the endocrinologist, she taught not one, but two people with diabetes about the insulin pump. The first was a child of about ten who takes five injections a day. Q showed her our supply bag and her insulin pump, and then tested her blood sugar. We demonstrated how easy it was to give Q insulin for her clementine snack with the pump. The girl and her mother were amazed. When we stopped to dine on our return trip home, we learned that our waitress was recently diagnosed with LADA (latent autoimmune diabetes in adults), and had been having wild blood sugar swings. Q once again demonstrated her insulin pump, and the young woman said she was going to talk with her endocrinologist about her options.
Children naturally become advocates because they don’t sugarcoat it. They tell it like it is, and are willing to share what they know and feel with others. If your child is ready to get involved, he or she can start as simply as a show-and-tell at school, reading a book about diabetes to classmates and showing the children some of the supplies needed for daily diabetes care. For children who really want to take advocacy to the next step, JDRF facilitates a Children’s Congress on Capitol Hill every other year where children meet with members of Congress to tell them about life with diabetes and urge the continued funding of diabetes research.
If you’d like to learn more about the book, you can read more on the Kids First, Diabetes Second book page. It’s available widely in print and as an eBook from book sellers such as Barnes & Noble, Amazon.com, and IndieBound. And if you do read it and find it to be a valuable resource, I would greatly appreciate if you could write a review on any of the online retail sites. Thanks!
Disclosure: This post contains affiliate links to booksellers.
Please remember that I never give medical advice. Ask your endocrinologist or pediatrician for advice about your own child. Make your own informed decisions for your own child.
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