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Chronic Illness among Children

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Latter-Day Saints Perspective

Parenting, by itself, brings many new challenges and opportunities to learn. Parenting a child with a chronic illness brings even more. A chronic illness is one that persists for a long time, sometimes for life. Examples of chronic illnesses are diabetes, asthma, and cancer. The needs of child patients are as varied as the types of chronic illnesses. However, parents of children with a chronic illness many times ask the same questions. Questions such as "why my child?" and "how did this happen?" Although we may not have all the answers to questions such as these, we can find counsel and direction from those who have gone through this experience.

The Family: A Proclamation to the World states: "All human beings-male and female-are created in the image of God. Each is a beloved spirit son or daughter of heavenly parents, and, as such, each has a divine nature and destiny..." There is comfort in knowing that your child is a child of God, and that He knows you and your child, and everything you are going through. These difficult experiences are a part of the growing process of this life, and although they may be difficult, there are things that can be done to help you, your child, and your family to cope.

After the Diagnosis

It is hard to prepare for the feelings that come with your child's initial diagnosis. It is important to acknowledge these feelings and allow yourself to feel them without feeling guilty. There are some things you can do that will help ease the pain these feelings may cause.

Keep a Positive Attitude

Learning about the diagnosis and dealing with the day to day responsibilities of the illness can bring feelings of fear, hurt, and confusion for you and your child. Keeping a positive attitude through it all will help you and will also help your child to cope more effectively (Patterson, 1991, p.495).

Become Informed

Becoming informed can help alleviate fears and give you practical suggestions to do what you can to cope and better treat your child's illness at home. Physicians are a great place to start. They can give you information, and direct you to more. Another great source of information and support is parents and children who are going through the same thing.

Find Other Parents and Children Going Through the Same Thing

Sometimes what helps most is knowing that you're not the only one going through this. There are many websites and organizations available to help provide you with information and support. Some of them are listed at the end of the article.

Helping Your Child

Being diagnosed with a chronic illness is just the beginning of a long road for you and your child. Every child adjusts to their illness in their own way. Although each situation is unique, there are some things all parents can consider doing to help their child live as normal a life as possible.

Communicate with Your Child

There is no better way to ease fears and to build trust with your child than to communicate openly and honestly-in an appropriate way for their age level-about their illness and any medical procedures they may have to go through. Giving your child choices in treating their illness when possible will help him or her to feel more responsible and in control of it.

Give Your Child Choices

One of the primary purposes of growing up is learning to become independent and make choices. This is the same for children with a chronic illness. While some things are mandatory--such as certain medications--some are more flexible. Find out where you can be more flexible and let your child make the choice that is most appealing. This will help the child feel more responsible and in control of the illness. It will also give them a sense of accomplishment.

Support their Friendships and Activities with Peers

Encouraging your child to enhance his or her talents aside from their illness can help facilitate friendships that otherwise may be hard to make. Friendships with peers give children a sense of belonging and support. These friendships can also help your child feel that he or she is normal and provide an identity separate from his or her illness.

Coordinate with Your Child's School

Good communication with your child's school is essential when you have a child with special health needs. There are many things a school can do to help prepare for a child with special needs.

Helping your Family Cope

The chronic illness of a family member is a situation where all family members are asked to adapt. This can put a lot of strain on a family. The following are ideas to help your family cope and even become stronger in the face of a chronic illness.

Stick to a Routine

A family is best able to cope with the needs of a chronic illness when the needs of that illness are integrated into a regular family routine. This routine includes the delegation of responsibilities and an organized schedule of appointments. It is important to remember the need of flexibility in your routine to ease the stress that accompanies too many obligations.

Communicate

Open and honest communication with your family, and especially your spouse, can help ease fears, ease stress, and make caring for your child more a part of normal, every day life.

Be Committed to and Seek Comfort from your Family

The most important trait in resilient families of children with special needs is commitment to each other as a family (Patterson, 1991, p. 495). This commitment can be shown by being optimistic, sharing responsibilities with each other, and doing activities together (Patterson, 1991, p. 496). By paying attention to your family as a whole, you emphasize the importance of each family member and let each of your children know how important and loved they are.The Family: A Proclamation to the World states: "extended family should lend support when needed."(¶ 7) Many extended family members are ready and willing to lend a hand. Turn to them when you are in need of support and strength.

Remember your Other Children

Once you as a parent have become informed about your child's chronic illness, be sure to also communicate with other members of your family, especially the child's siblings, about the child's diagnosis and the nature of the child's chronic condition. Be sure to provide information that is geared to the child's level of understanding.Just as you and your child who has a chronic illness are experiencing different emotions, so are your other children. Your children may experience jealousy, anger and depression. Parents need to exercise care to provide time and energy to other children in the family and still meet the needs of the chronically ill sibling.

Taking Care of Yourself

When caring for your child and adjusting to this new challenge in your life, it is essential to remember the importance of caring for yourself. The following are things you can do to ensure that you are being taken care of as well as your child.

Know Your Limits and Be Willing to Take a Timeout for Yourself

Make it a priority to do those things that are essential and reward yourself for doing those things. Don't be hard on yourself if you don't accomplish all you want to. Just as you are flexible and understanding with your child, be the same way with yourself.When things are getting too hard to handle, sometimes it helps to take a timeout. Give yourself time to do something you enjoy. Many times exercising can help to clear your mind and release tension.

Take Advantage of Offers to Help

Many friends and family members are looking for opportunities to help. Take advantage of these. They take some of the stress off you while strengthening the relationships you have.

Make Use of Respite Care

Respite care is a valuable resource to those caring for a child with a chronic illness. It is short-term specialized childcare that allows parents to take a break from their sometimes overwhelming responsibilities.

The Family: A Proclamation to the World states: " Each (person) is a beloved spirit son or daughter of heavenly parents, and, as such, each has a divine nature and destiny" (¶ 2). Although the road may seem rough, there is comfort in knowing that your child is special and was sent specifically to you. You have the strength and the love only you could give and, in the end, that is what really matters.

Written by Melanie Churchill, Research Assistant, and edited by Stephen F. Duncan, Professor, School of Family Life, Brigham Young University.

With violence, cruelty, sin, and selfishness, many believe that moral values are becoming increasingly less prevalent in our society. According to President Gordon B. Hinckley,

"The virus which has infected them [youth] comes of leaderless families, leaderless schools, leaderless communities. It comes of an attitude that says, 'We will not teach moral values. We will leave the determination of such to the individual'... Educators in all too many cases have adopted an attitude of moral neutrality".4

While individual choice is part of our agency, this does not imply that parents should step back and abandon teaching their children moral behavior. The Family: A Proclamation to the World states, "Parents have a sacred duty to rear their children in love and righteousness...to teach them to love and serve one another, observe the commandments of God, and be law-abiding citizens wherever they live" (¶ 6). Parents have a unique position in that they influence the moral behavior of their children first and foremost to everyone else. While morals can be taught at school and at church, children learn first from the home.

"I have heard a few parents state that they don't want to impose the gospel on their children but want them to make up their own minds about what they will believe and follow. They think that in this way they are allowing children to exercise their agency. What they forget is that the intelligent use of agency requires knowledge of the truth, of things as they really are (see D&C 93:24). Without that, young people can hardly be expected to understand and evaluate the alternatives that come before them. Parents should consider how the adversary approaches their children. He and his followers are not promoting objectivity but are vigorous, multimedia advocates of sin and selfishness".1

For children to make decisions based on what is right and wrong, they need to know their choices. If they are not taught at home good moral values but they are exposed to the attacks of the adversary at school, it will be harder for them to know what is right. We can help children to know what is right by teaching them correct moral behavior in the home.

How can we teach children moral behavior?

  • Teach them the doctrines of the gospel. "True doctrine, understood, changes attitudes and behavior. The study of the doctrines of the gospel will improve behavior quicker than a study of behavior will improve behavior".6 Instead of simply focusing on the behavior of children, we can teach them the correct principles to follow. When we teach them charity, for example, we are in essence also teaching them how to treat those around them. The behavior will have more meaning to them if they learn the principle first.
  • Be an example. Children watch those around them, and they are very aware when parents' behaviors are inconsistent with what they say. If you want your children to be honest, you should be honest with them. They need to see you doing what you want them to learn. When they see that you not only tell them to act morally but act correctly yourself, you can motivate them to also choose right from wrong.2,3
  • Hold them accountable for incorrect behavior. This does not imply harsh punishment for every misdeed, but you can teach them that there are consequences when they do something they shouldn't. Elder D. Todd Christofferson shares this example from his youth:

"I can share with you a simple example from my own life of what parents can do. When I was about five or six years old, I lived across the street from a small grocery store. One day two other boys invited me to go with them to the store. As we stood coveting the candy for sale there, the older boy grabbed a candy bar and slipped it into his pocket. He urged the other boy and me to do the same, and after some hesitation we did. Then we quickly left the store and ran off in separate directions. I found a hiding place at home and tore off the candy wrapper. My mother discovered me with the chocolate evidence smeared on my face and escorted me back to the grocery store. As we crossed the street, I was sure I was facing life imprisonment. With sobs and tears, I apologized to the owner and paid him for the candy bar with a dime that my mother had loaned me (which I had to earn later). My mother's love and discipline put an abrupt and early end to my life of crime".1

For many children, teaching them that there is a consequence for behaving badly is more motivational than a scolding. This is not teaching them to fear punishment necessarily, but that their actions have an effect on others.

  • Participate frequently in Family Home Evening, Family Scripture Study, and Family Prayer. All of these are opportunities for parents to teach the messages of the gospel, including principles such as integrity, hope, virtue, agency, respect, and other important doctrines that will influence their moral behavior. President James E. Faust remarked,

"I wonder if having casual and infrequent family home evening will be enough in the future to fortify our children with sufficient moral strength. In the future, infrequent family scripture study may be inadequate to arm our children with the virtue necessary to withstand the moral decay of the environment in which they will live."2

Whatever your family can do will bless your family and your children in learning moral behavior; if you feel that your family needs more strength to withstand the temptations of the world we live in, prayer, scripture study, and FHE can be assets to strengthen the moral character of your family.

Not only knowing how to foster moral behavior but when to teach your children is important. Terrance Olson states that the time to teach your children about moral behaviors is before they meet those temptations. One example is dating; if you don't want your children to date before they turn sixteen, this is something that you should already have discussed before they have reached that age. That way, when the opportunity arises, they already know the repercussions of their potential behaviors. Brother Olson gives us this guide for knowing when to talk to your children:

"Test yourself to see how well you as a parent are preparing your children to meet life. Imagine that your children are five years older than they are now. If you have an eight-year-old boy, he is now thirteen. Your ten-year-old girl is fifteen. What are you teaching them right now which they will need to know at thirteen and fifteen? In five years your boy will be entering junior high. What will he need to learn between now and then to help him experience success in junior high? He will have been a deacon for a year. What does he know about the priesthood now, at age eight that would lead him to approach his ordination reverently? What does your ten-year-old girl need to understand now about dating, about life's purposes that will help her prepare to wait until sixteen for dating experiences?"5

By thinking now about what you want your children to know in the future, you can prepare them for potential hazards by teaching them in advance about moral behavior. Fostering moral behavior should not be a daunting task; many parents are doing it already. By being aware of teaching moral behavior, we can use available opportunities to maximize that instruction.

Written by Kaitlin M. Miller, Research Assistant, and edited by Stephen F. Duncan, professor in the School of Family Life, Brigham Young University.

References

  1. Christofferson, D. T. (2009, November). Moral discipline. Ensign, 105-108.
  2. Faust, J. E. (2005, October). A thousand threads of love. Ensign, 2-7.
  3. Faust, J. E. (1987, May). Will I be happy? Ensign, 80.
  4. Hinckley, G. B. (1992, May). A chosen generation. Ensign, 69.
  5. Olson, T. D. (1981, March). Teaching morality to your children. Ensign, 10.
  6. Packer, B. K. (1986, November). Little children. Ensign, 16.