November 2007
Dealing Day-to-Day With Diabetes —A Whole Family Experience
By Karen Giles-Smith, MS, RD
Today’s Dietitian
Vol. 9 No. 11 P. 44
A child diagnosed with diabetes isn’t the only one who needs to cope with the condition. Families also need guidance on adjusting to their “new lives.”
When a child is diagnosed with diabetes, it’s a time of upheaval for the entire family. Gayle Hood, a dietitian and mother of two young boys, was devastated when one of her sons was diagnosed with type 1 diabetes. Hood experienced myriad emotions: denial, fear, sadness, guilt, and anger. “I knew life would never be the same from that moment on,” she says. “I was right. We have a new ‘normal’ now.”
Unless they’ve experienced it themselves, most people don’t realize how diabetes affects families. A basic understanding of what families of children with diabetes go through and a willingness to offer encouragement and support can help these families adjust to their “new life.”
A Devastating Diagnosis
Life was relatively carefree for the Hood family—Gayle, her husband Mike, and their two sons, Matt and Jacob—until nearly one year ago when Matt, then aged 8, was diagnosed with diabetes. The diagnosis was unexpected; neither side of the family has a history of diabetes. When Matt began drinking large amounts of water and getting up several times during the night to use the bathroom, Gayle subconsciously recognized the symptoms. She took Matt to the doctor but didn’t allow herself to seriously consider the possibility of diabetes until the pediatrician said, “Matt has glucose in his urine. I’m on the phone right now with the hospital. They’re expecting him in the pediatrics unit.” As Gayle gathered their belongings, she replied, “That’s what I was afraid of,” and began to cry.
Gayle called Mike at work. He heard the distress in her voice but didn’t fully understand the implications of the diagnosis. When Mike arrived at the hospital and saw the physicians and nurses crowded around Matt’s bed, he also realized life would never be the same. He likens it to the sobering feeling many men experience the moment their baby is born.
“This is something families live with 24 hours a day,” says Gayle. “When I counseled diabetics, I saw them once, and as a clinical dietitian, that was the most important time to me. But health professionals have to see the bigger picture.” The bigger picture is the family dynamics—the milieu of emotions and worries and the ways families deal with the initially overwhelming aspects of learning about and living with diabetes.
The Parents’ Experience
Parents of children newly diagnosed with diabetes are given all the facts about managing diabetes from a clinical standpoint. However, according to Alicia McAuliffe-Fogarty (formerly Alicia McAuliffe), PhD, who has type 1 diabetes and is the founder and director of the Circle of Life Camp, Inc., a nonprofit camp for children and young adults with diabetes, the social and emotional aspects of diabetes are probably underemphasized.1
Denial, guilt, and fear are often the first feelings parents face. McAuliffe-Fogarty’s mother explains her reaction when her daughter was diagnosed with diabetes at the age of 11: “Not my little girl! I had nursed her forever, three years to be exact. She ate all the right homemade food, had sun and fresh air. What could we have done differently? We wracked our brains as to how we could have done this to her. We feared the same for her sister. We feared for her future as well as ours. How could fate be so cruel?”1
Gayle had had a similar reaction. “All I could think about was why this was happening to our family,” she says, “and I was worried about giving Matt the insulin shots.” In fact, during the first few days at home, Gayle was terrified that she might harm Matt by giving him the wrong amount of insulin.
Mike worried about the future. He wondered how he and his family would cope. In the hospital, he watched a video of parents of children with diabetes explaining that life can be normal again. During the video, Mike wondered how they would ever reach that point.
According to McAuliffe-Fogarty, who wrote the book Growing Up With Diabetes: What Children Want Their Parents to Know, parents have more difficulty accepting and adjusting to diabetes than children. “It is more difficult to fit diabetes into an adult lifestyle and to relearn a new routine while unlearning old habits,” she says. McAuliffe-Fogarty recalls one parent saying, “At first, you feel like your entire life has been taken away and you are a slave to diabetes.”1
McAuliffe-Fogarty counsels parents to move past feelings of guilt and anger as soon as possible and focus on their children and managing their diabetes. An optimistic attitude about diabetes and making sure diabetes doesn’t limit the child helps him or her live a normal life. McAuliffe-Fogarty tells parents, “Your child is able to do anything as long as she fits her diabetes regimen into her schedule.”1
The Child’s Experience
When some children are diagnosed with diabetes, they become angry and feel sorry for themselves or deny they have diabetes—and they should be allowed to feel this way. Deanne Kelleher, RD, a pediatric endocrinology dietitian with Sparrow Health System in Lansing, Mich., says children’s feelings of self-pity come and go, but it’s important not to give in to pity parties, especially with teens. “I allow the tears initially, then encourage them to move on,” says Kelleher. “They’ll say it’s not fair that they have to manage their diabetes, and I say, ‘No, it’s not fair, but it’s lifesaving therapy.’” Kelleher also stresses the importance of listening to the family and letting them lead the education. “It helps me get the family’s perspective—how they’re doing and how they’re handling things,” she says. “I just ask them to tell me about it. I’ve learned a lot from my patients.”
Parents, too, must listen to their child’s concerns, questions, and feelings. McAuliffe-Fogarty says, “Children lean on their parents for support and encouragement, and for a child living with diabetes, this is even more important.” She tells parents, “You taught your child how to crawl, walk, and talk. Now you must teach her to live, to survive, and to thrive.”1
The Hood Family: Surviving and Thriving
After becoming comfortable with the basics, such as insulin injections, calculating carbohydrates and exchanges, and interpreting food labels, Gayle says the most helpful part in managing Matt’s diabetes was working with the endocrinology team to set up a flexible routine. “It’s important to consider the family as a whole,” says Gayle, “instead of only treating the clinical symptoms.”
Together, the endocrinology team and the Hood family made accommodations in Matt’s care plan for his activities and sports, family traditions, and the family’s lifestyle, such as who would manage what (eg, grocery shopping, meal preparation, counting carbs). “At Christmastime, we put less candy and more fun stuff in their stockings,” Gayle says. “And instead of giving the boys giant Easter baskets, we have a scavenger hunt.” She explains that, especially with children, it’s important to be lenient with what they’re allowed to eat. “They shouldn’t have to feel left out, deprived, or that they have to hoard candy bars.”
When working with families, Kelleher gets a comprehensive idea of what goes on at home to customize the education: How is food viewed in the family? Are any foods considered a treat or a reward? What were mealtimes like before the diagnosis? “Parents’ No. 1 concern,” says Kelleher, “is that they’re stuffing their child with food when the child doesn’t want to eat.” To make it possible for children to honor their feelings of hunger and fullness, Kelleher develops a more flexible insulin plan—based on what they’re actually going to eat—as early as possible. She also teaches children how to manage insulin to enjoy a birthday treat or a snack at school. “Kids with diabetes don’t need special snacks,” Kelleher says. “With proper guidance, planning, and family support, we can help them feel not so different from other kids.”
The ABCs of Diabetes
Even though Gayle has a background in nutrition and counseled type 2 diabetics as a clinical dietitian, she was floored by how much she had to learn about diabetes management after Matt was diagnosed. For many months, Gayle’s full-time “job” was to educate herself and others to ensure Matt received proper care at home and school. “The most important thing you can do for your child is to educate the adults surrounding [him or] her, so your child is not excluded or treated differently,” McAuliffe-Fogarty says. “Also, educate your child about diabetes and the misconceptions surrounding the condition so [he or] she is prepared … When schools, peers, and the general public are educated and understand diabetes, their misconceptions are dispelled, they are less afraid of it, and they will feel more comfortable around people with diabetes.”1
Kelleher agrees: “Part of my responsibility is to make sure we educate as many people in the patients’ lives as possible: the nanny or the day care provider, siblings, Grandpa and Grandma, and the schoolteacher.”
To educate the school employees, Gayle did her homework and a lot of legwork. Armed with information about how to help the school staff and students feel comfortable caring for and being around Matt, Gayle visited the school several times to talk to school staff and Matt’s classmates.
Gayle met with several staff members individually: the principal, secretary, Matt’s third grade teacher, art teacher, music teacher, gym teacher, and bus driver. She had to start at square one since there hadn’t been a student with newly diagnosed diabetes in need of insulin injections for as long as the principal could remember. To make matters more complicated, there wasn’t a school nurse at the elementary school. Gayle explained Matt’s needs and provided the staff with detailed verbal and written instructions for school days and field trips. She also added information about diabetes to the school’s 504 (laws prohibiting discrimination against someone with a disability) and medical management plan. (Visit www.diabetes.org for more information.)
When Matt started third grade in the fall, Gayle visited the school every day at lunch to give Matt an injection until the special education teacher, the only staff member willing to wield a needle, took over. “I let the teacher practice on me,” says Gayle. “Practicing on an orange isn’t the same, and I wanted to be sure she was comfortable.” The special education teacher called Gayle every day to ask how many units Matt needed, which depended on his blood glucose before lunch and how many carbs he ate. In October, Matt switched from insulin shots to the pump, and Gayle visited the school twice every day—at 10 am and 12:30 pm—to help Matt enter data into the computerized pump until he felt confident doing it while supervised by the school secretary. Gayle says the school staff has been supportive and followed through responsibly several times, such as calling her when Matt’s low blood sugar didn’t improve after a snack. The school staff also makes sure substitute teachers receive information about Matt’s condition, including the symptoms to watch for and what to do.
To make sure Matt’s classmates didn’t think something was “wrong” with him, Gayle read them the book Taking Diabetes to School. The book is written from the perspective of a child with diabetes in a way that’s easy for children to understand: “Doctors and nurses don’t know how or why I have diabetes. I didn’t do anything wrong (like eat too many sweets), and it’s nobody’s fault! Doctors and nurses do know you can’t catch diabetes from me. It’s okay to play with me and be my friend.”2
Education can prevent value judgments that may hurt a child’s feelings and self-esteem. Word choices, for instance, make a big difference. Instead of calling a child “a diabetic,” the child is “a person with diabetes.” Instead of calling diabetes a “disease” (although technically, it is), it can be referred to as “a condition.” And glucose readings should be called “low,” “normal,” or “high” instead of “good” or “bad.” Without this type of age-appropriate education, children may believe Matt did something wrong to have diabetes, that he’s sick and may die, or that he should be treated differently or avoided.
“I feel like I’m broadcasting [Matt’s diabetes] to the world,” says Gayle. “I communicate with everyone: all of Matt’s coaches and the staff at all the summer day camps. But if I don’t let everyone know, they might think he’s just acting goofy when his blood sugar is low. It’s a delicate balance. I want Matt to be treated normally, but the adults taking care of him need to know about his diabetes.”
The New Normal
“I’ve been able to deal with everything pretty well,” says Gayle, “because I have a type A personality. But to avoid getting overwhelmed, I have to think ahead and be very organized.” Mike says he feels things are “pretty normal” now, but it’s tough to be spontaneous. “You always have to remember to bring the meter, glucose tabs, and a cooler with you and eat on a fairly regular schedule,” says Mike. “I’m not very organized, so I’m grateful that Gayle is.”
Events that are fun and exciting for Matt are usually stressful for Gayle. “I still worry when there’s a substitute teacher or when Matt goes on a field trip, to a birthday party, or stays at a friend’s house overnight,” she says. “But I let him go and have fun and be a kid.” Something as simple as a trip to a nearby beach requires a lot of time planning and packing. Gayle developed a checklist of 18 items to pack. The list helps her remember everything, which gives her peace of mind.
Matt has learned to do some age-appropriate self-care, such as blood glucose monitoring, ketone testing, and entering his blood glucose levels into the computerized insulin pump. It took him more than three months to muster the courage to do his own finger sticks, but now it’s as routine as brushing his teeth. Matt has a mind-over-matter approach to his diabetes management, recently telling his mom, “If you believe something won’t hurt, it won’t.”
Gayle treats Matt the same as always and encourages others to do the same. “I don’t allow diabetes to be used as an excuse or a crutch. I want him to be a normal kid,” she says, “and to do all the things other kids can do. He’s a kid with diabetes, but he’s still a kid.”
— Karen Giles-Smith, MS, RD, is the manager of nutrition communications for the Dairy Council of Michigan and a freelance writer.
References
1. McAuliffe A. Growing Up with Diabetes: What Children Want Their Parents to Know. New York: John Wiley & Sons, Inc.; 1998.
2. Gosselin K, Freedman M. Taking Diabetes to School. Plainview, N.Y.: Jayjo Books; 1998.
A Typical School Day
• 6:30 am: Matt gets up and tests his blood sugar level.
• 7 am: Gayle gets up and the family eats breakfast. Gayle counts the carbs that Matt eats and inputs the data into his pump.
• 7:30 am: Gayle packs school lunches and a snack for Matt. She writes the amount of carbs in the snack on the snack bag and the amount of carbs in Matt’s lunch on a piece of paper for him to carry in his pocket.
• 8 am: The boys go to school.
• 10 am: In class, Matt tests his blood sugar, eats his snack, and enters the data into his pump.
• 12 pm: Matt tests his blood sugar, eats lunch, and walks to the school office. The secretary checks the note in Matt’s pocket and makes sure Matt enters the correct data into the insulin pump. She may need to refigure the carbs if Matt didn’t eat all of his lunch.
• 3 pm: Matt tests his blood sugar before he gets on the bus. If his blood sugar is low, he takes fast-acting glucose and the teacher calls Gayle to pick him up. If Matt feels “low” during the bus ride, the driver gives Matt a snack from the stash Gayle has supplied.
• 4 pm: Matt has a snack at home and enters the data into his pump.
• 6 pm: Matt tests his blood sugar, eats dinner, and inputs the data into his pump.
• 8 pm: Matt tests his blood sugar, eats a snack, and inputs the data into his pump.
• 9 pm: The boys go to bed.
• 3 am: Gayle tests Matt’s blood sugar while he sleeps if changes have been made to the pump settings during the day or if a high or low blood sugar is suspected.
• Every 72 hours: Change infusion set.
Additional glucose checks may be needed if Matt is feeling “high” or “low.”
• Once per week: Data from the meter/pump is uploaded to the pump company’s Web site where the pediatric endocrinologist’s office can access the data and suggest any necessary changes to the care plan.
Gayle’s Recommended Readings
A First Book for Understanding Diabetes by H. Peter Chase, MD
Growing Up with Diabetes: What Children Want Their Parents to Know by Alicia McAuliffe
Helping the Student with Diabetes Succeed: A Guide for School Personnel, The National Diabetes Education Program (Available here)
Safe at School (information packet), American Diabetes Association, 1-800-DIABETES
Taking Diabetes to School by Kim Gosselin and Moss Freedman
How Parents Can Help Educate Schools
• Ask for the school district policy on medication administration, blood glucose testing, and injections.
• Meet with the teacher and principal one week or more before the school informs them that your child has diabetes. Explain daily management and effects of high and low blood glucose.
• Obtain the daily class schedule: recess, gym class, lunch time, snack time, etc.
• Establish a box of emergency snacks in locations such as the main office, homeroom, gym teacher’s desk, and on the bus.
• Teach how to give injections to someone at the school, particularly if there is no school nurse. Even if your child has a pump, someone still needs to know how to administer glucagon in an emergency.
• Meet with any staff member at the school that your child has regular contact with: music teacher, art teacher, librarian, playground supervisors.
• Talk to the bus driver. Make sure he or she knows that your child must be able to eat on the bus, if necessary.
• Find out where blood glucose testing will occur (may be in the office or classroom).
• Get the menu from the school cafeteria to determine carbohydrates.
• Educate your child’s classmates about diabetes.
• Prepare a 504 plan and a medical management plan.