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Families living with type 1 diabetes

Published: Monday, July 6 2015 5:03 p.m. MDT

Six of the eight children in the Schull family have been diagnosed with Type 1 diabetes. (Kirsten Schull) Six of the eight children in the Schull family have been diagnosed with Type 1 diabetes. (Kirsten Schull)

Kirsten Schull is a power mom. Living in the dairy-farming country of Warren, Utah, she and her husband consider themselves to have a normal family of eight children. All are musically gifted, while some into computers, sports and singing.

And six of her eight children have type 1 diabetes.

Diabetes affects 25.8 million people, 8.3 percent of the U.S. population, according to the Center for Disease Control and Prevention. Within those numbers, about 215,000 people under the age of 20 are diagnosed with diabetes and 5 percent of the total have type 1 diabetes.

Imagine pricking your fingers four to five times a day to test your glucose level and inserting a needle four to seven times a day to put insulin into your body. On top of all that, imagine riding a constant wave of up-and-down sugar levels that leave you feeling energetic one moment and tired the next, or focused one moment and completely unfocused the next.

Six of the eight children in the Schull family have been diagnosed with Type 1 diabetes. (Kirsten Schull) Six of the eight children in the Schull family have been diagnosed with Type 1 diabetes. (Kirsten Schull)

That's the life of a typical type 1 diabetic.

"I think that emotionally it's tough," Schull said. "It's tough on kids because they get a sense that they're not quite normal … that they're just a little set apart … and a lot of time the parents can't handle it."

Type 1 diabetes is a chronic disease in which the body produces little or no insulin, a hormone produced in the pancreas which is necessary to convert sugar, starches and other food into energy. The lack of insulin causes high levels of a sugar called glucose to build up in the bloodstream instead of going into the cells where it is stored and later converted into energy. Without the conversion of sugar into energy, the body begins to exhibit symptoms of fatigue, hunger, increased urination, weight loss and thirst.

After several years of practice, the Schulls have mastered the mental, emotional and physical side of caring for their children with type 1 diabetes.

Lilly Diabetes and Disney offer "Dishing it Up Disney Style," a Disney-themed cookbook of recipes for families with Type 1 diabetes. (Lilly Diabetes) Lilly Diabetes and Disney offer "Dishing it Up Disney Style," a Disney-themed cookbook of recipes for families with Type 1 diabetes. (Lilly Diabetes)

"We always say welcome to the club," Schull said. "It's not a great club to be in, but welcome. We love each other and support one another and it works."

Adjusting at home

According to Schull, one of the best things you can do for your child is to keep the diagnosis in perspective and keep it low key.

"If you make it the focus of everything and watch your kids, they can't settle back into life," she said. "Then they'll grieve their health."

Schull reminds parents to talk to their children lovingly and to remember that a child isn't diabetes and diabetes isn't your child. "Let your child be normal. Be involved with them personally before you even get to the diabetes."

Lilly Diabetes and Disney offer "Coco Goes Back to School," one of a series of Mickey Mouse children's books focusing on a character named Coco who has Type 1 diabetes. (Lilly Diabetes) Lilly Diabetes and Disney offer "Coco Goes Back to School," one of a series of Mickey Mouse children's books focusing on a character named Coco who has Type 1 diabetes. (Lilly Diabetes)

Each child has to go through the processes of adaptation, but they can come to terms and learn to manage.

Lilly Diabetes, a pharmaceutical company that supports programs and initiatives for people living with diabetes, partnered with Disney to provide resources and information to parents of children with type 1 diabetes. In addition to the family.go.com/type1 website, the organizations have made available "Dishing it Up Disney Style," a cookbook of recipes for families with type 1 diabetes and a series of children's books about a character named Coco who has type 1 diabetes. Parents can obtain free copies of the books from their children's health-care provider.

Adjusting to school

One of these children's books, "Coco Goes Back to School," focuses on returning to school after being diagnosed with type 1 diabetes. In the book, Coco explains type 1 diabetes to her classmates.

Six of the eight children in the Schull family have been diagnosed with Type 1 diabetes. (Kirsten Schull) Six of the eight children in the Schull family have been diagnosed with Type 1 diabetes. (Kirsten Schull)

"When a kid is just barely going back (to school) and they're panic stricken and emotionally overwhelmed, it's so hard (for them) to step back in … and there's so much scrutiny over what kids eat and it can get overwhelming for them," Schull said.

According to Schull, parents should ask to meet with all school personnel who will deal with their child, such as the school nurse, teachers, principal, bus drivers, librarians and physical education teachers, among others. The goal is to educate the team about general diabetes management, which includes how to recognize signs of lows and highs, testing for glucose levels and administering insulin.

According to information provided by Lilly Diabetes and Disney, at this meeting parents should also discuss their child's individual needs and develop a care plan to be followed during school.

"In my personal experience, teachers and staff at school want to do their very best and the best thing you can do is really teach, train, prepare, trust and establish a good relationship, because if people work with kids they want to make it a success for them," Schull said.

Lilly Diabetes and Disney also encourage parents to fill out the school health forms promptly every year with instructions and contact information.

The complete list of tips from Disney and Lilly Diabetes can be found at family.go.com. In addition to the health forms, it suggests setting up a 504 plan. Schools are required to make accommodations for any special need a child may have, and drawing up a 504 plan provides official documentation that a child has diabetes and spells out exactly what's necessary to help children thrive in school.

Crystal Jackson, director of the Safe at School program and the associate director of Government Affairs & Legal Advocacy within the American Diabetes Association, is charged with coordinating advocacy efforts using the legal protections to ensure that children with diabetes receive the appropriate accommodations at school.

The Safe at School program was established in 2004 as a way to help parents understand their children's legal rights and their protections in the school setting. For help with legal aspects, a staff of trained legal advocates is available. The hotline can be reached at 1-800-DIABETES (342-2383).

According to Jackson, two keys for establishing an effective 504 plan are to meet with the school ahead of time and to be a resource for the school nurse in terms of training. Safe at School templates for training and information on legal protections and resolving challenges can be found at diabetes.org/safeatschool.

"It's important for parents to be proactive and to approach the school in a spirit of cooperation," Jackson said. "You're going to work together to make sure your child is going to be healthy and is going to be able to participate in all the same activities as others students."

In addition to the above steps, Schull also suggests that parents make a class presentation to talk with children about their newly diabetic classmate, ensure that your child has all the supplies they'll need in the classroom, and prepare healthy lunches and snacks for school with carbohydrate counts of each food included.

"It's going to be an adjustment period. It's hard. Your child is worried. It's very distressing," said Schull. "They've felt crummy for a while, then slam, they're supposed to be normal with all these pokey needles and people bugging them about what they're eating. Parents, you can manage this. You can do it. There are going to be difficulties ahead, financial and emotional, but you can do it."

Email: ajones@desnews.com

Copyright 2015, Deseret News Publishing Company