The DIPG / DMG Resource Network

Communication: When a DIPG Child Can No Longer Speak


Understanding The Journey: A Parent’s Guide to DIPG
communication.jpg

Content used with permission from the American Childhood Cancer Organization. Hoffman, Ruth, editor. Understanding The Journey: A Parent’s Guide to DIPG. American Childhood Cancer Organization, 2012. Print.
Contributing Authors: David Brownstone, MSW, RSW, Caelyn Kaise, MHSc, SLP(C), Reg.CASLPO, Ceilidh Eaton Russell, CCLS, MSc (candidate)

Supporting a child or teenager who has a brain tumor is an incredibly important and difficult job. And trying to help them understand and live with their changing abilities can be overwhelming, especially when caregivers naturally struggle with these changes themselves. The situation is also a challenge because while a child’s physical abilities to communicate—including the ability to produce speech and to express thoughts and feelings—can change, cognitive abilities often stay intact. So if a child or teenager has trouble communicating because of a brain tumor, the task of supporting them becomes even more complex.

Family members and caregivers who have been in this situation often express that they did not know what to do or where to start, and they often felt helpless and frustrated. But in the end they did it. With time, patience, creativity, and support, families find ways to communicate with their children and teenagers with brain tumors, even though these young patients had, or have, trouble speaking. 

This section includes “lessons learned” from talking with 14 families about their experiences, as well as our team’s experiences working with families of children with brain tumors. (Note: Our team only interviewed families of patients younger than age 13 and our examples reflect this. While the examples may not be relevant to teens, as many issues and struggles are unique to that age group, the communication strategies are similar and can be adapted for teens.)

The parents we spoke with generously shared the creative strategies and tools they developed, the most important conversations they had, and the most important lessons they learned. When we began to talk with these parents, our goal was to develop a new communication tool, yet they taught us that although tools are helpful, in the end, direct communication is more valued and helpful. Families encouraged us to share strategies and resources with families like yours so that others facing this stage of brain tumors will have ideas about where to start, what to try, and know that they—and you—are not alone.

Of course every family and every child is unique, each with their own values, philosophies, experiences, and backgrounds. Some of your family’s experiences may be very different from those of the families we interviewed. However, some of the situations they faced or the strategies they tried may be similar to yours or helpful to you. We encourage you to think about the ideas outlined in this section and to use or modify them so they work for your family and are well suited to your child’s age and developmental stage. 

Most of all, the families we talked to and the members of our team sincerely hope that sharing this information will help you and your family feel, at the very least, a little more prepared and supported during this difficult time.

Quick Tips

To help you focus on how to approach and enhance communication with your child, here are a few quick tips to think about.

  • Practice communication strategies before your child needs to use them.
  • Practice more than one signal for “yes;” no response can be used to mean “no.”
  • Start by asking broad questions, and then ask more and more specific questions as you get an idea as to what your child is thinking about or wanting to say.
  • Use simple sentences to get to the main point. For example, ask “Are you hungry?” instead of “Do you want something for dinner?” Remember the “KIS” principle: “Keep It Simple.”
  • Remind your child what the “yes” signal is before asking each question.
  • Wait longer than usual for your child to respond.
  • If your child has a hard time responding, repeat the question or simplify it. For example, if you’ve asked “Are you hungry?” simplify by saying, “Hungry?”
  • To make sure your child’s message is understood correctly, repeat what you think he said. For example, “Okay, you are hungry,” or “So you’re not hungry.” This gives your child a chance to confirm that his message was interpreted correctly.
  • Be patient with yourself, your child, and the process.
  • When exploring emotional issues, ensure that you understand your child’s unique perspective rather than thinking about it only from an adult perspective. In other words, focus on how your child is thinking and feeling, not how you would think or feel in the same situation.

Communication

Preparing for the unexpected

It is hard to prepare for something when you don’t know what to expect. Brain tumors affect children’s abilities in different ways at different times, but some changes are more common than others and can be anticipated. For example, speech often starts sounding slurred and can be difficult to understand due to weakness or difficulty coordinating the lips, tongue, and jaw. Children’s abilities to use their arms and hands may also become compromised, making it difficult for them to write, draw, or point.

Regardless of the kinds of difficulties children with diffuse intrinsic pontine gliomas (DIPGs) have, the parents we interviewed agreed that two important strategies helped maximize communication with them.

  1. Learn and practice ways your child can communicate without speech before your child needs to use them. This is not always easy. Children can be reluctant to use communication strategies before they absolutely have to, and parents and children often do not want to think about a time when these strategies will be necessary. This reticence is natural and understandable. However, the patience and concentration that are needed to learn a new skill may not be present once your child’s energy and abilities are declining.
  2. Practice more than one way of communicating without words. This way, if some of your child’s abilities change in an unexpected way, she can continue to communicate using another familiar means. When practicing other ways to communicate, it is often useful to find a way to adapt a current communication tool or technique to suit your child’s changing abilities rather than switching to a brand new system. By adapting a strategy that children and families are more familiar with, their experiences serve as “practice” and they may feel more comfortable and confident in their abilities to use it.

In this section, we present some concrete examples of communication tools and strategies to use with children who have a DIPG. This is in no way an exhaustive list, but it serves as a stepping stone to understand how to maximize communication.

Different ways to ask questions

Two techniques that are very useful when helping children express a wide range of messages are:

  1. Offering two clear choices.
  2. Asking questions that can be answered with a “yes” or “no.”

These techniques require you to ask clear and carefully worded questions and will take thought and practice.

Offering two clear choices

No matter what a child’s functional ability is, he/she is likely to be able to choose between two things, whether by pointing at or by looking at different objects. It is important to clearly tell your child what the two choices are and then ask your child to show you which one he wants. 

For example: A parent can hold chocolate milk in one hand and juice in the other. After showing them to the child and saying what is in each hand, the parent then asks the child which one he/she would like, reminding him/her to point or look at the drink he/she wants. Once the child has made a choice, the parent should double-check by asking, “Do you mean that you want the juice?” then wait for him/her to show that he/she means “Yes.” 

When a child is choosing between two things that you cannot show him/her, try asking a series of questions to find out what he/she wants. For example:

  1. “I wonder if you would rather go for a walk or take a bath?”
  2. “I’ll ask you about one thing at a time, and then I’ll wait after each one in case you want to say “yes.”
  3. “So, want to go for a walk?” After asking this question, pause for at least 10 seconds.
  4. If your child does not respond, say, “Okay. Want to take a bath?”

It may take your child longer than usual to make a choice, so remember to wait for a response. If your child does not respond, here are a few things to try.

  1. Ask if he/she needs you to remind him/her of the signal for “yes.”
  2. Ask if he/she needs you to remind him/her, what the options are, then wait for him/her to respond. If he/she says “yes,” repeat the series of questions above and wait for his/her response.
  3. Ask if he/she does not want either of the choices that were offered, and wait for him/her to respond. If he/she says “yes,” try to think of other options he/she may prefer.

Offering choices helps children feel like they have some control. Although with this method it can take a long time to find out what your child wants, it is usually worth the extra effort.

Using “Yes” or “No” questions

Even when it’s very difficult for children to choose between two things, caregivers can help them express themselves by asking questions that can be answered with a simple “yes” or “no.”

Children can show they mean “yes” in a range of ways, including:

  • Nodding their heads.
  • Giving a “thumbs up.”
  • Wiggling a finger up and down.
  • Raising their eyebrows.
  • Looking up (like nodding with their eyes).
  • Wrinkling their nose.
  • Wiggling their toes or moving a foot.

**Remember to practice more than one signal for “yes!”

Any part of the body that the child can control can be used as a signal for “yes.” Instead of making a second signal for “no,” it is easier to assume that if the child doesn’t say “yes,” he means “no.” This creates less confusion about which signal to use for which word. When practicing this technique, ask your child to choose a couple of signals, then ask him/her five “yes” or “no” questions that you know the answers to and make sure your answers match his/her signals. If they match, you’re ready to start! 

Some questions may have more than one meaning, so it is very important to ask in a way that is clear and direct. For example, asking your child, “How are you feeling?” can be confusing, because it could refer to physical or emotional “feelings.” Instead be specific; ask “Are you sad?” or “Does your body feel okay?” This allows your child to respond with a clear “yes” or “no.”

When there are fewer clues about what your child wants or needs, start by asking broad questions, then ask more and more specific questions based on your child’s responses. For example, if your child seemed upset you could start by asking, “Is something bothering you?” If the answer is “yes,” you can ask more specific questions one at a time until she says “yes” again. The following is an example of a progressive series of questions.

  1. “Is it something in your body that’s bothering you?”
  • If she says “yes,” ask, “Is it your head?” or “Is it your stomach?” continuing to ask about different body parts until she says “yes.” Remember to pause after each question to wait for a response.
  • Once your child says “yes” about a particular body part, ask, “Is it sore?” “Is it itchy?” or “Is it hot?” etc.

If he/she does not say “yes” to any part of the body, say “Okay, maybe it’s not something in your body that’s bothering you. Are you feeling upset about something?” If he/she says, “yes,” ask questions about specific feelings, such as, “Are you sad? Are you feeling frustrated?” until he/she says “yes” to something.If your child does not say “yes,” try asking, “Is it something you’re thinking about?” or “Are you worried about something?”

This example illustrates that it is often easier to know what to ask when the topic is concrete, such as physical sensations or finding out what a child wants to do. Talking about more abstract concepts, such as emotions and ideas can be much more complicated because there are many more possible questions. Because of this, you will need to ask a lot more questions when discussing these topics. 

If you continue to ask questions without being able to figure out what your child wants and he/she becomes frustrated, it is good to talk with your child and explain in the following way.

  1. “I know that you know what you want to say. This is really hard for both of us, but I want to try to help.”
    • Then ask, “Should I keep trying to figure out what you’re thinking or should we take a break? I’m going to ask you that again and wait for you to show me “yes” after the one that you want me to do.”
      • Then repeat these two options, pausing in between for your child’s response.

It is especially important to be patient with the process, and with yourself and your child, during these discussions.

Figuring out what to ask

Although interactions may feel different when a child has trouble speaking, he/she is still the same person as before. Try to consider past experiences with your child, including his/her typical behaviors, preferences and needs, to give you clues about what he/she would want now. 

Facial expressions and body language

When you recognize a familiar facial expression, it probably means the same thing it used to mean. In addition to telling you about their feelings and moods, a child’s face or body can also show you whether he/she is comfortable (through a relaxed body) or uncomfortable (through a tense body or face). 

Tumors may affect facial muscles for some children, making facial expressions look different than they used to. However, parents often say that even with these changes they can recognize what their child is expressing, especially because the children’s eyes continue to show a lot of emotions. 

Routines and preferences

Time of day, familiar routines and the context of a situation can offer clues about whether your child is tired, hungry, wants to bathe, go outside, or play. Although children may have to do these things in a different way than they used to, if they are losing some of their abilities it is still helpful and comforting for them to participate in familiar activities as frequently as possible. Thinking about the situation—where you are, who’s around, and what you are doing—will also help narrow down the questions or the needs the child may currently have.

We have found that while it may feel like there are a million things a child could want or need; it is often the simplest things that the child wants. Try to always start with basic questions, such as whether the child wants to sit up or change position. If the child has a communication tool, check to see if that’s what the child is asking for. 

Coping with the challenges of communication

If you feel daunted, frustrated or overwhelmed, try to remember that although this can be an incredibly difficult task, YOU CAN DO IT. In fact, you have probably done it already, before your child learned how to speak as a baby. Although he/she has developed intellectually since that time and now has more complex ideas to express, remember that with your help, your child was able to learn a new way of communicating once before and will again. Try to be patient with yourself, keeping in mind that the difficulties you may face with this new way of communicating are caused by this enormously challenging situation; always remember that you’re doing the best job you can. If you need to, take breaks to manage your own stress. Young people can sense your anxiety, stress, or frustration, so allow yourself the time to refocus and know that this is a challenging process for any parent.

Communication Strategies

Families have shared with us a range of creative communication strategies they have used, which fall into two categories:

  1. Tools: meaning there is an actual “thing” to help the child express himself.
  2. Techniques: referring to a special way of communicating without using a physical tool.

Please note: this may be an overwhelming list of possibilities. We’ve included these to assist you in finding what will work best in your situation; you are not expected to use them all.

Tools

  • A bell or buzzer: These can be used to get someone’s attention if the child is in a different room, or be used as a way to say “yes.”
  • Paper and pencil/markers: For kids who have learned to print or write, this is a familiar way to express their thoughts.
  • Magna Doodle: Children can write messages, draw pictures, or draw an arrow to point the Magna Doodle at what they want. Kids typically enjoy these because they are familiar and feel like using a toy rather than a “special device,” and because they are easy to use.
  • Laptop/tablet: Children who know how to type like using laptops because they can send emails or type messages for someone to read while they type. They also tend to like that they can watch movies on the same device, although for some the laptops are too heavy.
  • Keyboard: A few children have used regular keyboards that are not connected to computers. They press a series of letters to spell a message while someone else watches and reads what they typed. Special keyboards that have the letters in alphabetical order can also be used. These tools help children express a wide range of messages, but some people who have used the keyboards say it can take a long time to type messages and a child can forget what letters they have already typed. Many families create their own keyboards by clearly writing the alphabet in large letters on a piece of paper or cardboard for the child to point to.
  • Picture books or boards: These can be like scrapbooks or a piece of cardboard with photos or drawings and words, made by family and friends. Children can point to a picture or word, or parents scroll through, pointing to one message at a time and waiting for the child to say “yes” when they point at the right message. Some people find it frustrating to search for the right message, especially when the child wants to say something that is not included in the book or board.
  • Feelings faces: A chart showing a variety of faces, including happy, sad, angry, frustrated, lonely, bored, excited, hopeful, etc., can help children to express themselves by pointing (or having their parents point) to the feeling they are having. The number of faces to include depends on a child’s age and abilities; faces can be added or taken away as a child’s needs change.
  • High-tech communication devices: These devices usually have buttons for children to press, with each button causing a different message to be spoken, allowing kids to express a range of messages. While some children like using these, others do not, because certain devices are complicated, seem unfamiliar, and are sometimes hard to use or learn or feel impersonal.

Tips about tools

  • For kids who are able to read, include words as well as pictures or symbols in communication tools. Children will associate the words with the symbols so if it later becomes difficult to read the words, they are still familiar with the meaning of the symbols.
  • Include your child in creating their communication tools (such as books, boards, high-tech devices) as much as possible. By choosing which images will represent different words, feelings, activities, etc., your child maintains some control and will feel more connected and involved in the process. Involving children also promotes familiarity and makes them feel more invested in using the tools.
  • As much as possible, consider your child’s individual voice. For some families this means recording the child’s voice on a high-tech device or a voice recorder, saying common messages so he/she can hear his/her own voice. Families who have done this typically treasure the recording and encourage other families to do this as early as possible. When such a recording is not possible, families can record another child’s voice that sounds similar in age and gender. Many parents have said that it wasn’t just about the sound of the child’s voice but the kinds of things that he/she would have wanted to say. By including jokes, sayings or common phrases, a child’s unique personality is able to continue shining through in a meaningful way.
  • If you are using a tool that has preset messages or pictures in it, such as a picture book or a high tech device, your child may want to express something that is not included in the tool. In this case, be sure to ask your child about messages that are not in the tool. Ask, “Is it something that isn’t in here?” to find out if that’s the case. Then you can use “yes” or “no” questions to find out what your child is thinking, and to decide whether or not to add that new message to the tool.

Techniques

Most families we interviewed said they use special ways of asking questions, such as offering two choices, asking “yes” or “no” questions, and reading their children’s body language and facial expressions. Some families also used the following techniques:

  • Signs and signals: They use their hands or their faces, or adapt sign language, especially by using the first letter of a person’s name to refer to that person. An example of a signal would be a child holding an imaginary cup up to their mouth to show she is thirsty.
  • Pointing: Children can point to things to show what they want, such as pointing to a window to say they want to go outside. If a child is uncomfortable, he/she can point to the part of his/her body, or a picture of a body, to show others where he/she feels discomfort.
  • Lip reading: Some children have trouble producing sounds or words but are still able to make the shape of words with their mouths. For children who have trouble hearing, a few parents say that by mouthing words slowly, and exaggerating their mouth’s movements, their children can figure out what they are saying.
  • Physical presence, touch and hugs: When it is too hard to use words, being close to one another and sharing affection are great ways of expressing emotions and love.
  • Lists: Many parents said it was very important to keep three kinds of lists, and to keep adding to them, including:
  1. Signals, such as what the signals look like and what they mean, (i.e., “pointing to mouth means hungry or thirsty”).
  2. Common questions that caregivers ask, things that the child frequently asks or says, or issues or needs that the child has.
  3. Clues to a child’s needs, such as body language, time of day, or anything else that can help caregivers figure out what the child wants or needs.

These lists may help you remember or think of what to ask, and improve communication when someone else, who is less familiar with his communication strategies, is caring for your child.

Tips about communication in general

  • When possible, try to adapt familiar communication tools to meet a child’s changing needs rather than introducing new tools.
  • Keep talking to your child. Avoid asking questions that they can’t answer; stick with “yes” or “no” questions, but keep including your child and asking her opinions.
  • Teach siblings how to communicate using the new tools or techniques. This helps to encourage interaction and maintain sibling connection.
  • Use communication strategies to play games with your child to improve comfort using the strategies. Children who are able to say “yes” can play twenty questions; children who are using a communication book can choose a message while others try to guess what it is. Play charades by having your child point out one message for another person to act out.
  • Try to be patient with yourself, your child, and the process. There is no easy way to do this. Try to stay calm, take deep breaths, and take care of yourself. Parents and their children can often feel frustrated and helpless. In the midst of this difficult process, one of the most important things for children to hear is: “I know that you know what you want to say.”

Challenges

Some children are reluctant to use tools before they are needed and may feel the tools undermine their current abilities. If a child refuses to use a certain tool, try telling him/her that he/she does not have to use it right now but that you want to show him/her how it works anyway. That way if you need to reintroduce it later, it will be familiar.

While we do not want to force children to use a communication tool they don’t want to use, if their abilities change unexpectedly and they have not already had the chance to learn and practice communication strategies, it can be even more challenging for them to use new techniques to express themselves. For these reasons, we recommend that families talk about and practice a range of communication strategies rather than focusing only on one. 

Try adopting old strategies as much as possible so your child can keep using the same approach in a slightly different way, rather than learning something completely new. For example, start with a picture board with many small pictures, and if your child’s vision starts to change, narrow down the number of pictures, spread them out, and enlarge them so they’re easier to see. Practicing a variety of techniques and adapting them (rather than starting something totally different) are ways of helping children feel familiar with different communication strategies. 

Sometimes you may need to communicate in the midst of a crisis situation or while your child is distressed; these moments may be brought on by physical and/or emotional pain that the child is feeling. It is important to know how to calm yourself and your child so you will be able to work together and communicate effectively to manage these situations. Practice calming techniques together on a regular basis. Some examples are deep breathing, blowing bubbles, soothing touch, or focusing on each other. These techniques are helpful because when you and your child are calm, you will be able to communicate more effectively, which is especially important in an urgent situation.

Deciding what to try

Choosing a strategy for communicating with your child depends upon the child’s abilities and personal preferences. Consult with your child’s team to find out what strategies might be the best suited to your child’s needs, abilities, and preferences. Then, considering your child’s personality, decide which ones to try. Together you can decide which ones work best. Some children are open to using familiar tools that feel like play, such as drawing, writing, or using a Magna Doodle. Remember that the emphasis of communication should be on the connection between you and your child rather than the content of the messages.

While it is often easier for a child to keep doing what is familiar rather than trying something new, sometimes there is no choice. If a communication strategy is no longer working, or if your child is getting too frustrated, it is time for a change!

Communication Topics

Parents we spoke with felt it was important to be able to talk about “everything:” physical comfort, feelings, worries and “regular conversations” about friends, jokes, hobbies, and daily activities. Some messages were more concrete—hunger, discomfort—which are easier for children to express by pointing to a picture or an object, or answering “yes” or “no” questions. Abstract topics such as emotions, spirituality, and the future are more difficult to discuss, requiring caregivers to ask more questions in order to help a child express what he/she is thinking and feeling.

Parents described some of the most important topics they addressed with their children, and strategies they used to do so. It may seem overwhelming to think about all of the topics or messages your child may want to express, and the charts, lists, or strategies you could create. Remember that becoming familiar with communication strategies will happen over time and with support from family, friends, and your child’s team at the hospital.

The way you communicate throughout this time will be shaped by your family’s values, belief systems, personalities, and previous experiences communicating, especially about difficult topics. While we know sharing information and discussing feelings helps children and families cope and support one another, there is no “right” way to go through this experience.

Physical and health needs

Parents described important conversations they’d had with their children about how their abilities had changed and that the changes would continue. Although these can be difficult discussions, children cope better when their questions are answered than when they are left to wonder and make up their own answers.

Medical needs

Children we spoke with wanted to know about medical equipment, tests, and procedures, including the use of different medical equipment, how it works, and what procedures will feel like. When a procedure will be uncomfortable, people may be afraid of upsetting children by telling them the truth. Unfortunately, when children are caught off guard by a needle or other unpleasant things, they do not have the chance to react and then calm down and then try to cope with the experience before it is time for the procedure. Children may also begin to doubt caregivers and to think that things are being kept from him even when they’re not.

Children benefit from knowing what to expect—where a procedure will take place, who will be there, what steps are involved, and what it will feel like. This information gives kids a chance to prepare for what will happen and practice coping strategies, such as deep breathing, blowing bubbles, holding your hand, listening to music or a story, using guided imagery, or squeezing a stress-ball. Children may also benefit by watching a simulated procedure on a play-therapy doll or stuffed animal.

When explaining medical procedures to children, it is important to be honest, to use language that is clear and simple, and to check in with them by asking “Does that make sense or would you like me to try to explain it in a different way?” 

Children may also want to know why treatments are needed, how to know if they’re working, and what happens if they don’t work. When a child finishes or stops a certain treatment, he/she may wonder what that means, whether it is because the disease is gone or because it can’t be cured. These are difficult concepts to explain, but if a child has a question, it is better to explore the answers honestly and openly together than for a child to rely on his own imagination. These issues can be overwhelming for children to think about on their own; talking about them together offers reassurance and support for the child even when there aren’t clear-cut answers.

It is helpful to talk to children about what kinds of information they want to be told about their illness, treatment, and side effects, before communication gets more difficult. That way you have an idea of what your child wants to know about and you can continue to provide the information your child wants and needs throughout his/her journey.

Emotions

To talk about feelings you can use charts with pictures of different facial expressions or use a list of feelings. Your child can point to the face that shows how he/she feels, or you can point and look for your child to indicate when the right answer is selected.

It is helpful to offer a wide range of feelings so your child can express his/her true emotions, rather than settling for one that is “close but not quite right.” On the other hand, if your child is getting overwhelmed, use a shorter list or chart with four to eight simpler feelings such as happy, sad, scared, mad, bored, etc. Try to use words that are familiar to your child and make sense given her age. If possible, try to include your child in creating this list of feelings to ensure she is familiar with all the words and that she has some control. 

Strategies for talking about emotions

Ask your child if he/she feels a certain way. For example, “Are you feeling happy?” or “You look frustrated, are you feeling that way?” This offers your child the chance to express an emotion and to offer some control by answering “yes” or “no.”

Share how you are feeling and then ask your child whether he/she is feeling the same way. This helps a child express his feelings and reassures him/her that others feel that way, too. However, it is important to recognize that children may feel differently than the people around them; this is perfectly normal. Try to say something like, “I’ve been feeling pretty sad and I wonder if you have, too.  You know, it’s okay to feel sad and it’s okay not to, too.” 

Children need to be reassured that all of the feelings they have, no matter how intense, unfamiliar or conflicted, are natural. Let your child know that even though these are not “easy” feelings to have, they are natural, understandable, and “okay.” A lot of emotional messages can be conveyed through hugs and touch. Being close and making eye contact also helps children feel more connected and comforted. 

Activities

When a child’s abilities change what he/she is able to do or play with, it is helpful to have a list of things that your child can do to choose from. Lists also help parents so they don’t always have to remember all of the options. Some of the most common activities that parents we interviewed said their children enjoyed were: listening to music, watching a movie, hearing a story, going outside, playing a game, writing to someone, making food, or visiting friends.

People and pets

Maintaining relationships with family and friends is very important for young people. Parents and caregivers can help by giving children a way to ask to see a special person, or to send them a message. Create a chart with names and photos of family members, friends, and even pets, for children to point to.

Many children ask about people they know who have died, wondering where they are now, whether they are “okay” and commenting that they miss these people. It is natural for a child who has a serious illness to start thinking about life and death and loved ones who have died. It can be a safe way to wonder about these things, an indirect way for children to show you that they’re thinking about death, and a way to start a difficult conversation. Also, when children realize their loved ones are still remembered and loved after they’ve died, it offers them the reassurance that they, too, will be remembered and loved after their death.

The Future and Spirituality

It is natural for children to wonder about these topics, especially as they feel their bodies changing and sense the emotions in the people around them. It can be very hard for children to initiate conversations, especially when they fear that talking about these things will be upsetting for others. They may ask questions in indirect ways, such as asking about the death of a pet, or the death of someone else, or general questions about what happens after you die. Because of how difficult it can be for children to bring up these topics, it is very important to support them when they want to have these conversations, rather than avoiding or changing the subject.

If your child has questions about death and spirituality, try to answer his/her questions as honestly, clearly and calmly as you can. He/she may ask you questions you don’t have answers to. That’s okay. You can say you’re not sure, that many people wonder about questions like that, and that it’s okay to wonder about these things together, even without finding any answers.

In interviewing parents, some of the biggest struggles they said they faced were about whether or not to tell a child that he/she could or would die and how to do that. Research and our own clinical experiences suggest that children and families benefit from having open and honest conversations. Families who do this said they did not later regret having had these conversations. Many parents said that even though it was so hard for them to talk about these things, after they had spoken with their child about death or spirituality, they realized the child seemed comforted and relieved, and that they—as parents—did as well. Whether you decide to talk with your child about death and spirituality and how you do this is up to you and will be a very personal decision based on your experiences and your beliefs.

About the future

For some children, thinking about the future can include writing a will, exploring organ donation, or planning a memorial celebration. Parents often worry that talking about these things with their children will cause them to lose hope. On the contrary, if a child is already thinking about these things, the opportunity to share his/her thoughts and feelings about them with loved ones can offer tremendous comfort and relief, a sense of control, and the opportunity to plan his/her own legacy.

You can also talk about how you will remember and honor your child at holidays, family events, birthdays, and other special times. Some families have a special meal or celebration, wear a special piece of clothing or jewelry, listen to a certain song or musician, or make up their own unique rituals for these special times. Others may plant a memorial tree or garden, hold a fundraiser, or create a scholarship in the child’s name. Some children have their own ideas about how they want their family to remember them, and many children want to be involved in family discussions about this. Not only does it reassure the child that he/she will not be forgotten but it gives him/her a clear idea of exactly how her family will remember and feel connected to him/her.

About spirituality

Some children ask their parents questions about what happens after someone dies, what they will do when they are in heaven, or how their families will feel their presence. Whatever your beliefs are, you can share them with your child. Many people don’t know what they believe, or may believe that there is nothing after death. If this is the case for you, you can explain to your child that many people have different beliefs and that you’re not sure what will happen, or that you’re not sure whether any of them will happen; either way, ask your child what he/she thinks, or would like to think.

Regardless of what you believe about what happens after death, you can talk with your child about how he/she will always be part of your family even though he/she will not be physically present. Things he/she taught others, personality traits, his/her values, and hobbies that he/she shared with others, are all deeply meaningful ways that his/her life will continue to impact his/her loved ones.

Caring for Your Children and Yourselves

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.

Parents’ Advice for Other Parents

The parents we spoke with shared some very personal insights into their experiences that may be helpful advice for others parents. Some of these are reflections or quotes about a parent’s outlook or important things that they tried to keep in mind while going through this same process with their child. 

About relating to children

  • Know your child, their personality, interests, coping styles, and preferences for support.
  • Have important conversations sooner rather than later. Have important conversations about topics such as illness, life, death, your love for them, and spirituality as early as possible. Although these can be emotionally difficult conversations to have, they get even more difficult once children have a harder time communicating.
  • Keep communicating. When a child can no longer express themselves to others, it can be hard to know whether or not to continue to talk to them. Communicating through story-telling and touch (including a hug, gently squeezing or rubbing a child’s arm) can convey love, warmth, affection, and provide great comfort to a child.

About relating to one another as parents and as a family

  • Try to work together—as a couple, as parents, and as a family.

Asking questions and asking for help

  • Whatever you want to know, ask. If there is anything you have wondered or worried about, do not hesitate to ask a member of your child’s health care team.
  • Whatever you need, ask. Different services will be available depending on the hospital or the community where you live. Ask a member of your child’s health care team to help you find resources near you.