I wanted to know more about what it's like for parents of kids with chronic illness and what resources are available to them. The following is my article which explores that very topic.
When Illness Strikes: Parenting a Child with Chronic Illness
Editor: Nickie’’s Nook
As medical technology becomes more sophisticated, more children are being born with chronic illnesses or disabilities. While the medical system might be able to save the child’s life, it cannot always remove the illness. This leaves many parents wondering “what’s next?” Fortunately, many resources exist to help parents care for their child with a chronic illness. This feature article will explore the challenges of parenting a child with chronic illness as well as the resources and advice to help ease the strain.
Not Bad, Just Different
Naturally, parents experience grief when they are told that their child has a chronic illness. It can spark a reaction of sadness, anger or fear. Parents may even feel unequipped to deal with the illness and wonder whether they would have done things differently if they had known about the illness in advance. Meanwhile, they are bonding and forming attachments to their child and cannot walk away. Parents need a new way to think about their child’s illness.
Emily Perl Kingsley describes her experience of parenting a child with a chronic illness as taking a trip to Holland. “When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting,” she explains. “After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."” Naturally, the parent would be shocked and disappointed “I signed up for Italy”, the parent might respond (Perl Kingsley, 1987).
Kingsley explains that the traveler would then have to buy new guidebooks, learn a new language and see different things. Life might be at a slower pace, but there are still treasures to be found. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss (Perl Kingsley, 1987).
It may be helpful, then, to think of the experience of illness as a trip to Holland. A destination which isn’t awful with horrible famine, but a different destination nonetheless (Perl Kingsley, 1987).
The More You Know, the Better you’ll Cope
Experts agree that parents must educate themselves about their children’s illnesses. This helps the parents know what to expect and helps the children because parents can prepare them more effectively for procedures, explain the purpose of treatments, reassure the children when a symptom of the illness becomes problematic and promote a calm atmosphere.
Children’s Hospital has an excellent web site with age-appropriate children and adult information. It can be found at http://www.childrensmn.org. Another resource is the Band-Aids and Blackboards site at http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/index.html includes information, resources and stories of children with chronic illnesses. It contains a virtual hospital tour to prepare children for a stay in the hospital. Finally, some hospitals offer patient education materials or classes and tours to assist children.
Healthcare professionals can be great resources, too. They can offer explanations about the course of an illness, its symptoms and possible treatments. Parents should be encouraged to participate in their child’s care and ask any questions they might have.
Love and Logic
When severe or chronic illness strikes, it can be difficult to know how parents should discipline their children and encourage effective self-care. Fights, power struggles and frustration can rule the day as a result of this. Uncertainty. It is important, then, to have a strategy for disciplining children and encouraging them to participate fully in their own treatments.
One such strategy is the Love and Logic system. The system uses empathy and logical consequences rather than punishment. The goal is for the child to learn to independently manage her or his condition, without nagging or scolding (Cline and Greene, 2006).
For example, if a child with diabetes does not perform her glucose checks, the parents might say “I’ll be happy to take you to swimming practice once you have checked your blood sugar”. Older children might only need to be asked how they are feeling to help them decide to perform self-care tasks (Cline and Greene, 2006).
Another concept is that of delivering a “strong dose of empathy”, before delivering consequences. The authors suggest phrases such as “What a bummer”, “That’s so sad” or “This is hard”. Then the parent can go on to deliver the consequence and the child still knows he or she is loved. It is also disarming to their argument that “you don’t understand what I’m going through”. The authors caution that expressions like “I know just how you feel”, breed hostility and the potential for rebellion (Cline and Greene, 2006).
Finally, it is important to give children with chronic illness choices whenever possible. This is especially true when dealing with illness because children may feel like they have no control. This encourages problem solving and gives control to the child (Cline and Greene, 2006).
A World of Resources
As mentioned earlier, the journey for parents of children with chronic illness does not necessarily need to be one of anguish. Rather, it can be a chance to explore new destinations and goals. As shown here, there are many options for parents with children with chronic illness. Parents can educate themselves and their children about various aspects of the illness. Finally, using love and logic to assist the child in self-care behaviors involves empathy, consequences and choices.
Children's of Minnesota - Children's Hospitals and Clinics of Minnesota. (n.d.). Children's of Minnesota - Children's Hospitals and Clinics of Minnesota. Retrieved August 1, 2010, from http://www.childrensmn.org
Cline, F. W., & Greene, L. (2007). Parenting Children With Health Issues: Essential Tools, Tips, and Tactics for Raising Kids With Chronic Illness, Medical Conditions, and Special Healthcare Needs (1 ed.). United States of America: Love & Logic Press.
Fleitas,, J. (n.d.). Chronic Illness, Children, Health Education. Lehman College. Retrieved August 1, 2010, from http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/index.html
Kingsley, E. P. (n.d.). Welcome to Holland. Our-Kids Website, Support for Parents and Caregivers of Children with Disabilities. Retrieved August 1, 2010, from http://www.our-kids.org/Archives/Holland.html