Local Hero
Family Circle, May 2007

When Lisa Shenson takes a shower, she brings her cell phone into the stall with her in case she gets a call about her fifteen-year-old daughter, Cara. Since Cara was diagnosed with Type 1 diabetes in 1998, Lisa's life has revolved around keeping her daughter alive and well: making sure that Cara's blood sugar is tested several times a day; making sure that Cara gets an insulin shot immediately if her blood sugar drops too low. For Lisa's daughter, the consequences of everyday acts-eating an ice cream cone, waiting a few hours between meals-can literally be a matter of life and death.

"Our family lives by Cara's insulin clock," says Lisa, a homemaker in Marin County, California. "Imagine there's a rock on the table and you're told you have to move it to the other side of the table eight times a day, 24 hours a day, 365 days a year. Diabetes is like that. It's an unrelenting disease."

Lisa will never forget the day six-and-a-half-year-old Cara was diagnosed. She'd brought Cara to the pediatrician for the third time in ten days. The doctor was as mystified as Lisa was by her symptoms. The normally bouncy little girl was lethargic, irritable, and short of breath. When Lisa mentioned that Cara was thirsty all the time, the doctor frowned and ran some tests. Then he came back into the room and told Lisa that Cara had Type 1 diabetes.

"I said I was relieved that it wasn't something really serious, like cancer," Lisa, 48, recalls. But the doctor explained that Cara's blood sugar was skyrocketing. If she didn't get to the hospital right away, she could die.

"The next 48 hours was a crash course in diabetes for our whole family," Lisa says. Before Cara was released from the hospital, Lisa and her husband had to learn to monitor Cara's carbohydrate intake, identify the symptoms of low and high blood sugar, test her blood for glucose, and give her shots of insulin. Their eight-year-old son Jared went through "diabetes boot camp" along with his parents. "A few days after Cara got home," Lisa says, "David and I were trying to recollect what they had told us about mixing short-acting and long-acting insulin in one syringe, when Jared told us how to do it."

It was difficult for Lisa to make the impact of Cara's diabetes on their family understandable to other people. Well-meaning friends would say things like, "Don't you have her stabilized yet?" adding a sense of isolation to Lisa's feeling of being overwhelmed. A year after Cara's diagnosis Lisa signed her family up for a "Diabetes Camp" run by the Diabetic Youth Foundation, one of many such camps in the U.S. that bring together kids and families dealing with the disease. While she was at the camp in the mountains of Northern California, Lisa realized that she and the other families she met needed this kind of day-to-day support all year round: other parents of diabetic kids to talk to, resources to share, tips on emotional, practical, and medical issues to share. So in 1999, she founded Marin Families of Children With Diabetes.

Every month since then, MFCD has held monthly meetings of twenty-five to fifty parents. Lisa describes MFCD as "a safe, empowering haven" where parents can gather and share information. Lisa also brings in experts to speak about the latest research, the emotional and practical aspects of living with diabetes, and available resources.

A few years after Lisa founded MFCD, David got a new job as an operations manager for a company in New York City. As she began looking for a house in the area, Lisa called school districts to see which, if any, would provide her daughter with the care her disease requires: on-site staff who were willing and able to test Cara's blood sugar and give her insulin shots. "Over the course of the school day," Lisa explains, "Cara's glucose level needs to be checked six to eight times. She needs insulin shots at lunch and snack times. As a young child, she needed adult supervision to help her with that."

Lisa knew that three federal laws-the Americans with Disabilities Act, the Individuals with Disabilities Education Act (IDEA), and Section 504 of the Rehabilitation Act of 1973-mandate that schools must provide disabled students with the services they need to get an education. So she was shocked by some of the administrators' answers. "They obviously didn't want a diabetic child in their schools," she says. "One of the administrators I talked to told me, "We don't do Section 504, even if a child is blind." Outraged by this callous disregard for her daughter's right to an education, Lisa says, "I went ballistic."

Lisa kept calling one school district after another, asking to speak to the person in charge of meeting students' medical needs. Finally she found an administrator in a Pennsylvania district who was eager to provide Cara with the medical support she needed in order to get the education she deserved. The Shenson family moved into a house in that district, a one-hour commute from David's job. Once her family was settled, Lisa channeled her anger back into activism. She learned that an estimated 210,000 American children have Type 1 or Type 2 diabetes. Many of these children, she found, are denied the care to which they are legally entitled in their schools, forced to go to the nurse's office instead of being allowed to administer glucose tests in the classroom, and refused adult supervision for self-monitoring and injections.

Lisa joined the Juvenile Diabetes Research Foundation, a national advocacy group that fights for the rights of diabetic kids in the schools. She became a volunteer moderator on the JDRF web site, fielding calls and emails from parents of diabetic children, educating them about the laws and how to get them enforced in the schools. "Some parents don't know about the federal laws," she says. "And those who do are often reluctant to stand up for their child's rights. They don't want to be seen as asking for special treatment for their kids-even though their kids need it."

One of the parents Lisa helped was a single mother who had a diabetic son in the New York City school district, the largest district in the nation. "This boy was being discriminated against. No one in his school knew what to do when his blood sugar was out of the safety zone," Lisa says indignantly. "We had to file grievances with the U.S. Office of Civil Rights. I worked with his mom for over a year. Finally, we won. Now it's mandatory that everyone who has supervision of that child during the school day must be trained in diabetes care."

After living on the East Coast for a few years, the Shensons were homesick for California, and longing for the support that their friends and family there provided. They moved back to Marin County in April of 2003. Lisa immediately resumed her activities with the MFCD, including reaching out to local parents who needed her help. "Lisa is the best," says Martha O'Conner, a neighbor of Lisa's in San Anselmo, California. "She heard about my son's diabetes diagnosis through the school nurse. She didn't wait for me to call her-she called me." Lisa helped Martha write her son's Individual Educational Program, the federally mandated customized plan that determines how each disabled child will be educated. Then Lisa arranged for Cara to baby-sit him. "Cara was the first kid my son had ever met who also had juvenile diabetes," Martha says. "It made all the difference to him to know he wasn't the only one."

Today, in addition to working individually with parents through the JDRF web site and continuing to coordinate MFCD, Lisa also uses the legislative process to advocate for the rights of diabetic kids in the schools. She's currently spreading the word about a bill soon to come before the California state legislature, which could make it illegal for school personnel to give medical care to students with diabetes. The bill is endorsed by the California School Nurses' Association, which argues that it's unsafe for non-medical personnel to offer medical services to students with special health care needs.

"If parents can learn to give their kids injections, so can school staff," Lisa argues. "Denying kids care at school is asking them to compromise their health-to check their diabetes at the door." Lisa hopes that if the California legislature can be convinced to make schools safe for kids with juvenile diabetes, that will open doors in states across the country.

Cara is fifteen now, a sophomore in high school. "I'm elated to see Cara blossoming to a new level of maturity," Lisa says proudly. "I used to have to nag her to do her own blood sugar tests, count her carbs, remember to put insulin in her pump, make sure her daily supplies are in her backpack before she walks out the door. Now she's taking responsibility for her own care."

Just as the many parents of diabetic children look up to Lisa, Lisa has someone to look up to, right at home.

"Cara has such ceaseless courage and wisdom far beyond her years," Lisa adds. "She's my hero."