Hand in Hand
A Growing Network For Kids and Families
Sheri Logan didn't know where to turn when her 17-month-old son, Alex, was diagnosed with type 1 diabetes. While she had tremendous help from her family and friends, she found herself wishing she could meet other families who were experiencing the same challenges that she was, like learning how to spot lows in a young child, choosing an insulin pump, and figuring out how to get a kid with diabetes ready to go to school.
That was 11 years ago. Since then, Logan, an elementary school teacher from Lexington, Ky., has helped create the American Diabetes Association's Family Resource Network (FRN) chapter in her area—and she got started creating family and teen support groups even before ADA had a nationwide program. Now she works to provide exactly the kind of support she herself had wanted.
"FRN was not around at the time [of my son's diagnosis]," says Logan. "That was the hardest part for me, because I couldn't really learn from someone else. Sometimes you just need someone to listen to you, and no one can truly do that unless they walk the same walk."
One family that benefited from Logan's help was Elizabeth Hardy's. Her daughter was diagnosed with type 1 diabetes at age 10, and today Hardy is the chair of the ADA Bluegrass Community Leadership Board in Lexington.
"I saved materials from the support group [Logan ran] and used the documents to prepare a 504 plan for Hallie for school," Hardy recalls. A 504 plan is the documentation that outlines a child's specific needs for diabetes management, including who will be responsible for giving insulin shots, when a child should receive glucagon, what the child needs in terms of snacks and blood glucose monitoring, and how much help the student will need from nurses and school personnel.
To get connected to or volunteer for a Family Resource Network, and to be connected to a Family Link parent mentor, you can contact your local ADA office or visit diabetes.org/families.
If you have a child who has recently been diagnosed with diabetes, ADA has many resources to assist you. For more information, visit http://www.diabetes.org/living-with-diabetes/parents-and-kids.
If your child experiences discrimination, or you need more information about your child's legal rights, call 1-800-DIABETES (1-800-342-2383) to speak to a legal advocate or visit diabetes.org/school.
Today, Logan is an avid ADA volunteer, helping to lead the Lexington office's Step Out: Walk to Fight Diabetes event every year, heading the Lexington FRN volunteer team, and serving on her local ADA Leadership Board.
"Sheri is the driving force behind this [network]," says Lisa Edwards, director of the Lexington ADA office, who credits Logan for the program's success. "[It's due to] her passion to make sure no other child or parent goes through what she had to go through."
An outgrowth of ADA's Diabetes Camps, FRN started up in 2003. "It was our way of creating a year-round connection [with families]," explains Michelle Knight, associate director of community-based youth programs at ADA. After all, families need support when the summer ends, too.
Today, more than 15,000 families are connected through FRN programs in 53 different communities. Through FRN, ADA hosts a range of events from baseball game outings to seminars that address sick-day plans for children with diabetes, all designed to help families network, learn, and gain support from other families.
As part of ADA's Safe at School program, FRN also educates parents about their children's rights and provides them with advocacy resources that ensure their children receive the best care at school. For instance, they'll help teach other parents how to implement a 504 plan. "If the parents don't feel comfortable going into the schools for their 504 meetings, they'll take an FRN advocate with them," says Knight. "The advocates also take ADA information into the schools with them so we can increase diabetes awareness there."
Knight describes one component of FRN, called Family Link, as a "connection strategy, linking parent to parent to offer one-on-one support." Lexington Family Link mentors, for example, work with the University of Kentucky Pediatric Endocrinology Department. "When someone has a child diagnosed at [the university hospital]," says Edwards, "we try to link them up with a family that has a child with diabetes around the same age and who has similar characteristics."
After the initial connection, the Lexington FRN continues to support new families by sending gift packages that include educational information about diabetes.
"The kids who are part of FRN write letters to the newly diagnosed children," Edwards says. "And it's great for them to be able to tell those children about all the things they've accomplished and that diabetes doesn't have to hold them back."
As for Logan's son, Alex is now 12 years old, a straight A student, and an athlete. His mother attributes their successful diabetes management to the ADA and FRN support they've surrounded themselves with over the years.
"FRN has made me see that diabetes is what you make of it," says Logan. "I can truly make a difference in other families' lives by being there for them. And my son is proof that you can lead a great life with this disease."
ADA offers many resources and programs for parents and children, including:
- Everyday Wisdom: ADA's gift to newly diagnosed children and teens is a package that includes booklets of information to help each member of the family handle daily life with diabetes, a carbohydrate-counting tool, a family game, a DVD with real-life stories, The Diabetes Dictionary, and more. Call your local office or the National Call Center at 1-800-DIABETES (1-800-342-2383) to get your free Everyday Wisdom kit and to be connected to a Family Link mentor.
- ADA Diabetes Camps: Help your child have fun in a safe outdoor environment and learn more about living with diabetes, while meeting other kids with diabetes, too. It's already time to start registering for camp: Visit diabetes.org/camps.