Caring for Your Children and Yourself

This is a very difficult and challenging experience for parents and children. Developing strategies to manage the impact of the ongoing loss of abilities can be as important as developing communication strategies. This section is meant to assist parents and caregivers in thinking about and addressing some of these challenges.

Supporting the Child With a Brain Tumor

Here are examples of some of the challenges and concerns that parents described and the things that can help kids deal with them. Strategies from the previous sections will assist in dealing with these issues.

Feeling Frustrated

When a child finds that he/she can no longer do something that used to be easy to do, or realizes that so much about his/her body or his/her life is beyond his/her control, frustration is a natural reaction. The loss of independence or needing help with things such as eating or going to the bathroom can be very upsetting, especially as children realize they will not regain the ability to do those things on their own. This kind of frustration might be expressed in different ways, such as being impatient or getting angry. One way to help children cope with these feelings is to help them find ways to express themselves with words added to a communication board or book, or physically using a stress ball made out of Play-Doh.

People often want to cheer kids up when they are feeling upset; sometimes they try to distract them by talking about something fun or focusing on an activity. But when children have these strong feelings, they need ways for their feelings to be expressed and heard—and to know that someone else understands—before they are ready to move beyond these emotions. It’s important to be patient and let your child know that you will work together to figure out what he/she wants or needs, whatever it may be.

Feeling Self-Conscious

As their bodies and their abilities change, it is common for children to feel less comfortable around others. Children, particularly teenagers, are often fearful about being seen as “different” or being treated “differently” than others. Educating a child’s peers about his/her illness, explaining that a tumor is not contagious and that it is the reason for his/her changing abilities, and helping them learn useful communication techniques can be a very good way to help them understand and relate to one another. There may be someone at your child’s hospital—such as a nurse, a child life specialist, or a social worker—who can visit your child’s classroom to talk about these things. Teachers and other school staff are often very helpful in organizing this kind of classroom experience. On the other hand, some children feel strongly that they do not want other people to know about their illness and would not be comfortable having someone speak with their classmates. Sometimes it helps to talk with your child about what he/she is afraid would happen if others found out, and you may be able to dispel these fears and facilitate the connection.

However, if your child does not change his/her mind, it is important to respect his/her wishes in order to avoid your child feeling embarrassed, helpless, or even vulnerable. There are so few things that a child in this situation can control that deciding what information to share with others may be one of the few things that he/she can control.

A few parents described their children feeling self-conscious about communication. MSN and other online chat systems, email, social networking sites, text messages, or even written letters can be great ways to help children keep in touch with their friends without having to feel so self-conscious. Also, if your child is comfortable with you teaching others how to use the specific communication strategies your family has developed, with time and practice, his/her feelings of self-consciousness may decrease.

Missing Familiar People and Activities

Familiarity provides so much comfort to children. When it’s possible to help children continue to participate in these kinds of activities, even if it means participating in a different way than they used to, it can be very helpful for them. On the other hand, some children may find that there are some things they don’t want to continue being involved in. If this is the case for your child, try to help him explain why he feels this way. It may be that he/she is self-conscious and afraid of how others might treat him/her, in which case you can talk to him/her about anything that can be done to help make the situation more comfortable or inviting. In some cases a child may feel uncomfortable or even unsafe in different environments. Whatever the situation, respecting your child’s wishes as much as possible will help him/her feel more comfortable and safe and give him/her a sense of control.

Coping With Medical Experiences

Play is a great way to help children cope with difficult experiences. In times of stress, play may be the furthest thing from our minds, but it may also be the most valuable tool. Blowing bubbles, bringing paper and crayons to draw or play tic-tac-toe, a deck of cards, or even a list of games such as “I Spy” or “Twenty Questions” are all simple and useful distractions. For older children and teenagers, think back to what has helped them before; listening to music, playing a video game, or reading a book may be useful distraction techniques.

Guided imagery, deep breathing, and other relaxation techniques can also help children of all ages cope with anxiety related to medical issues. Talking with your child about what is happening, what medical procedures might feel like, and any other questions or concerns they might have will help them better manage these experiences. 

Knowing They Will Be Cared For

Parents highlighted that it was extremely important for their children to know that they would be well cared for. This concept included three things.

• Knowing that the health care team would continue to care for them. When they know that a disease or a tumor is not curable, children may think that means there will be no more medical care.
• Knowing that they will still be looked after and that their pain and other symptoms will still be managed is very important.
• Knowing that they are not alone and that their parents and their family will always be with them and love them “no matter what.” When children are struggling with how they’re feeling and the ways their bodies are changing, this may be the most valuable comfort you can offer them.

Children’s Concern for Others

Another common and important concern parents told us about is children’s worries about whether their parents and their families will be okay after the child dies. Parents said it is very important to address these concerns by letting your child know two things: that the family will be sad and will miss the child after he/she dies, but at the same time, the family will be alright. Families did their best to try to ease the child’s burden of worrying about how his/her loved ones will cope. It’s important to express one’s love for the child while acknowledging the impact of his/her loss.

The Importance of Communicating

Parents told us that they often feel helpless and frustrated that they are not able to change the situation and protect their child from what is happening. Of course this feeling is natural. Sometimes in an attempt to protect a child, parents avoid talking with their child about his/her illness or letting him/her know that he/she is going to die. Although this is done with the best intentions, it does not have the impact parents hope for. Some of the unintended, possible consequences are:

• When children are not invited to talk about their illness, they learn from others’ example not to raise the issue themselves. Without having someone to talk to about their thoughts and worries, they are left to wonder on their own, using their imaginations to answer their own questions.
• Children are very sensitive to the emotions of the people around them and know when others are upset. They can recognize when something is being kept from them and can only wonder what that might be, often imagining the worst.
• Children are more aware than anyone of the changes occurring in their own bodies. Although they may not know what will happen in the future, they have learned that unpredictable changes can continue to occur. If they do not feel able to talk about their illness or the future, they are left to face these questions and fears on their own. 

With these things in mind, it is clear that protecting a child from talking about his/her illness does not protect him/her from the difficult experience he/she is already living. Instead of letting this fact make you feel helpless, try to see that it actually offers you an important opportunity. You are not helpless. Even though no one can change what is happening, there is a great deal that you can do to help your child through this experience. As we’ve discussed in this section, there are some very important messages that will offer your child comfort, reassurance, and security. Make sure your child knows the following.

• Your child is not alone. You will be there to support him/her throughout this experience.
• Your child can trust you. You can truthfully prepare him/her for things such as medical procedures and other events so he/she feels less anxious and surprised by these things. Your child’s health care team at the hospital can help you figure out how to do this.
• Your child will be well cared for. You can reassure your child that you, your family, and your child’s health care team will all be working to make sure that he/she has what he/she needs to feel comfortable and taken care of.
• Your child will always be part of your family. You can talk about all of the things you will remember and all of the ways that your child will continue to have an important place in your family.
• Your family and people who know and love your child will be incredibly sad when he/she dies, but your family members and friends will support one another through their grief.

Although these things cannot change what is happening to your child, they can make him/her feel supported in the knowledge that he/she will not be alone. Nothing can take away the pain that your child and your family will struggle with, but these important messages can offer your child support and strength as you face what is happening, together.

Supporting Siblings

As a parent, you may not only be supporting a child who has a DIPG but also his or her siblings. There are some issues that are common for children who have a sibling living with a serious illness, and these can vary depending on the age of the children. For example, many children in this situation have questions about why this happened, worries about their own and/or their sibling’s health, and concerns about their parents’ emotional struggles. It is also very common for children to wonder if they are somehow to blame for a sibling’s illness and to worry that they may also “catch” the illness. Even if a child has not expressed these worries, it is helpful to say something like, “I just want to make sure you know that there is nothing you could have done to make this happen and that this is not the kind of illness you can catch from someone else.”

Many of the parents we spoke with shared their suggestions about how to help brothers and sisters.

• Make sure the siblings are able to continue spending time together at home or in the hospital.
• Help all of your children learn how to use the new communication strategies, as it can help children continue to interact with each other and maintain their relationships.
• Encourage siblings to say “hello” and “goodbye” to their sibling when they come home and when they go out.
• Encourage interactions that help a sick child continue to feel recognized and included in the family’s day-to-day activities despite their changing abilities.

Brothers and sisters may be reluctant or nervous about learning new communication strategies, and may be afraid of doing it “wrong” or looking silly if they do. Just like teaching communication strategies to a child who is sick, it can also help to use games to teach these strategies to their siblings, and to practice with them until they feel more comfortable using them. They may also need your help to understand why their brother or sister isn’t able to talk the way they used to. Because they may not be able to see any physical evidence of something stopping their sibling from being able to speak, some children wonder why their brother or sister just doesn’t try harder. It helps to explain that our brains are like computers that send signals or instructions to all of the other parts of our body to make it work, including our arms, legs, stomach, heart, lungs, eyes, ears, mouth, etc. When a person has a brain tumor, it interferes with, or “mixes up,” some signals so that things don’t always work the way they’re supposed to. This is why some children who have brain tumors aren’t able to speak the way they used to.

Similarly, children may not know how to interact or play with their brother or sister since their abilities have changed. They may also believe that their sibling doesn’t want to play with them anymore. Again, it is important to explain that these changes are caused by the tumor rather than being the child’s choice. Then you can help your children find new ways of playing or being together. Healthy siblings can read stories to their brother or sister, watch movies or listen to music together. They can also play “for” their sibling; some examples of this are making a beaded bracelet or building a LEGO tower by asking their sibling what color bead or LEGO block to use next. They can also draw a picture or write a story based on their sibling’s ideas about what to draw or write. When thinking about how to help children play together, consider what they used to do together and try to find ways to adapt those activities. Children may have a hard time trying new things; it can be easier and more comfortable to do what feels familiar.

Some other considerations we’ve learned about siblings are:

• Healthy siblings need opportunities to play for themselves.
• They will need your assistance to find a balance between feeling helpful without taking on too much responsibility for their sibling with a brain tumor.
• Even when they understand why their brother or sister needs the extra attention, siblings need support to make sense of, and express, their emotions and possible feelings of jealousy about the extra attention their ill sibling is getting.
• Sometimes siblings are asked to be patient, helpful, and understanding for a long time, which isn’t easy. This is a challenging experience for children of all ages, and their frustrations can be expressed differently at different developmental stages.
• All children need to know that their needs will be met.
• Children of all ages need love and support from their parents, though how they express this need changes at different ages.
• It is important to recognize and tell each child how much you appreciate all that he or she has done throughout their sibling’s illness, including specific examples when possible.
• Let them know that you recognize how challenging it has been and will continue to be and encourage them to let you know when they’re struggling and need help.

Talking with your other children about how they are feeling, helping them to understand that all of their emotions are natural, and encouraging them to express any questions or fears that they have is very important and beneficial. There may be people at the hospital or at school, such as child life specialists, social workers, counselors, or volunteers who can help support children when their sibling is ill. There may also be local organizations that can provide support.