Talking with your child
“Where you can, and where you are brave enough, to sit and listen to your kid, they know exactly what it is that they are ready to do, when they are ready to do. They know their body, they know if they are dying, they have a spiritual connection. I had to work really hard not to let my fear get in the way of his autonomy.” – Kim, mother of Kevin
In this section you’ll learn about why it helps to talk with children about their feelings and worries about illness and dying. You’ll learn about the challenges of talking about these topics and learn some ideas to help you have hard conversations. These ideas will help you talk to any of the children in your life. Try to be as clear, concrete, and honest as you can. It helps children to talk about these complex topics many times, over time, as their understanding and needs change and as the illness changes. Click on the topics below to learn more.
Some children don’t like to talk about feelings or worries about their illness because they think they will upset their parents. Others learn not to talk about feelings because the adults around them don’t talk about their own feelings. It can be hard to hear what your child is thinking or feeling, and their feelings or worries may match or stir up some of your own strong feelings. If you become sad when you are speaking with your child, be sure to tell them that they are not causing your feelings, it is the illness.
Wait for a calm moment
It’s hard to help children figure out how to express strong feelings when they’re in the middle of a meltdown. Wait until they’re calmer to talk about feelings. In the meantime:
- Stay with your child
- Watch how they express their feelings
- Make sure they don’t hurt themselves or anyone else
- When your child is calmer, and able to hear you, let them know you’re there for them, and their feelings are normal
Start a conversation
Tell your child that sharing feelings together, through talking or even crying, can help let them out.
Offer your child the chance to talk about their feelings but don’t force it. If you push a conversation they don't want to have, you may make them shut down. Create a way for conversation to happen naturally:
- Play a board game
- Spend time in nature
- Bake or cook together
- Go for a hike, walk, or drive
Teach the difference between feelings and behaviours
Children often express their feelings through their behaviour. They may not understand what they are feeling or have the words to express their feelings. Some behaviour may be concerning and is best addressed early on. Explain that all feelings are natural, but some behaviours are not acceptable. For example, it's okay to feel angry, but it's not acceptable to kick your little brother or sister.
Teach the words
Help your child develop an emotional vocabulary. This is the ability to name different feelings. When children can give names to their feelings, it can feel less confusing or overwhelming. Let them know you have these same feelings, and that all feelings are natural.
Name what you see
When your child expresses big feelings, try these steps:
- Watch the behaviour
- Describe what the child is doing
- When necessary, suggest a safer way to express the feeling
- Wow, you’re really hitting that pillow hard.
- I see you’re making the face you make when you’re really angry.
- Let’s think about what we can do to help keep you safe and make your body feel calmer.
Sort out needs
Try to identify the need that causes the feelings and behaviour. Find ways to meet those needs. For example, some children start doing things they’ve grown out of, like sucking their thumbs, as a way to comfort themselves. When you see this behaviour, ask if your child needs a hug, or to sit with you. You can also say:
- I noticed you’re sucking your thumb. I'm wondering if you feel sad or worried about something? I’d like to help. Can you tell me what you’re feeling?
Try out new behaviours
Talk to your child about how to express feelings without hurting anyone or anything. Some children find it helps to:
- Talk with someone they trust
- Write or draw about what's upsetting them
- Cry - alone or with someone
- If they miss someone: Look at photos or a memory box
- Cuddle something
Make a list
Help your child write a My Feeling Very Sad List and My Feeling Very Mad List of things to do when they're upset.
- Involve your child in writing the lists
- Have them sign it
- Place it somewhere they'll see it often, such as the fridge or their bedroom door
- Make one yourself – it’s a great way to set a good example!
Allie’s Feeling Really Sad List (Age 7)
- Remind myself it’s okay to be sad
- Listen to music
- Do a sad dance
- Kick around the soccer ball
- Look at photos or my memory box
- Talk to mom or dad
- Talk to one of my friends
- Read a book in a quiet corner
- Write or draw in my journal
- Cuddle my stuffed animal, mom or dad
- Play basketball
Christopher’s Feeling Really Mad List (Age 13)
- Remind myself it’s okay to be mad
- Do my angry dance
- Play my guitar
- Take some deep breaths
- Talk to someone
- Press the pause button (breathe in for 4 counts through my nose, breathe out for 8 counts through my mouth)
- Write in a journal
- Go for a walk or run
- Kick the soccer ball around outside
- Punch my pillow
- Stack firewood
- Listen to music in my room
Talk with teachers
It may help to talk with teachers if your child is having a hard time at school. Share some of the strategies you’ve been trying at home.
Ask for help
If you or your child needs more help with strong feelings, look for more help from:
- Support groups
- Counsellor or therapist
When a child has a serious illness, it is helpful for them and their siblings to have as much information as they want. When children do not have the information they need, they take what they’ve heard and fill in the blanks with their own ideas. Sometimes, they imagine things that are even scarier than what’s really happening. Children often believe that the illness is their fault. Sometimes, they worry that they will be left alone to deal with it.
It’s natural to have questions about how much to say and how to talk about illness with your child. Some parents worry that their child might “give up” and “lose hope” if they think they might die. But children are very good at balancing “hope” and “reality”. For example, one girl whose sister was dying, talked about “if she gets better,” and “when she dies”.
Talking together helps children learn that they are not alone and they can share things with their parents.
You may have had many conversations with your child already. If you need more ideas, see these steps:
- Plan your talks
- Start the talk
- Follow your child’s lead
- Explain the illness
- Describe what the illness does
- Name medicines and treatment
Plan your talks
You will likely have many talks with your child. Children often need to have hard conversations in smaller pieces over time. After they make sense of one part, they will often think of new questions that you can talk about the next time. They may also ask the same questions over and over again, not because they don’t believe you, but because every time they hear complicated information, it makes more and more sense, a little bit at a time.
If you feel nervous about your talks, you could try:
- Writing what you want to say to help you find the words that feel best for you
- Practicing with a trusted friend, family member or health care team member
There is not one “right” thing to say. If you say something in a way that you are not happy with, you can always say so, either right away or later on. For example,
“That didn’t come out the way I meant it. Can I explain that differently?”
Start the talk
Tell your child that you want to talk with them about the illness. Ask them to tell you what they know so far. Their answers will give you an idea about what’s on their mind, and any misunderstandings they might have.
Follow your child’s lead
Some people say you should, “follow a child’s lead” when you have a hard conversation. This approach works well once a conversation starts, but you should not wait for the child to bring up difficult topics. Some children don’t like to talk about their illness because they think they will upset their parents. Others learn not to talk if the adults around them don’t talk about difficult things.
As you talk, try these strategies:
- Pause after you share some information. Ask:
“Do you want to talk / hear / know more about that?”
- Give simple answers to their questions. Ask:
“Did you want to know something different / more?”
- Pay attention to your child’s body language. For example, if your child turns away or pulls up the covers, ask:
“Do you want to keep talking / listening, or would you like to take a break?”
If they ask to take a break, check in with them later, or the next day, to ask if they would like to talk more, or talk at another time.
Explain the illness
When adults explain that someone is sick or ill, children might think this is the same as having a cold or flu. For this reason, it’s important to use words like, cancer, spinal muscular atrophy, or adrenoleukodystrophy. Even though your child might not know what these words mean yet, this:
- Helps even the youngest children understand this illness is different from a cold or flu.
- Gives your child a name for the changes they see in their body.
- Builds their understanding of what is happening to them.
"This disease is called ______. It isn’t like getting a cold or the flu. It doesn’t spread from one person to another even through touching, hugging, sharing food, or playing together."
Describe what the illness does
- It can be helpful to ask your child how they feel their illness, and its treatments, has affected them.
- Use clear language to explain how the illness is affecting your child. For example:
"This disease is making it hard to ______ the way you used to, and it’s making your body feel ____."
- If the illness or treatment is affecting your child’s thoughts and behaviours, tell them.
"We use our brains to think and to control the way our bodies move and talk. When there’s a disease or medicine that changes the way a person’s brain works, it can make it hard for the person to think/move/act/talk the same way that they used to, and it can mix up the way that they feel."
- If the illness, injury or treatment is affecting your child’s ability to speak or stay awake and alert, let siblings or other children know that they can still talk to them, or be with them without talking at all. Their presence, the sound of their voice or the touch of their hand can still provide comfort even if your child cannot respond.
Name medicines and treatments
- Explain side-effects of medicines, such as hair loss, headaches or nausea, so that the child knows that these symptoms are not being caused by the disease getting worse.
- Explain that some medicine is to help the child “get better,” or make the disease go away. Some medicine helps the child “feel better,” by treating symptoms like pain and nausea. When a child knows or worries that the disease will not “get better,” this explanation helps them know that the doctors will help manage symptoms.
- Name the medicines and treatments your child gets. In simple terms, explain what they are for and how they work. For example:
"You will get medicine through an IV in hand/ arm/ or foot. An IV is like a tiny plastic straw to put medicine right into your veins so that your blood can carry it through your whole body. That makes it work faster and stronger than the medicines that we drink when we have a cold or a headache. The medicine is called _______ and its job is to _____."
“It was the hardest talk I have ever had but my son seemed to be waiting for me to tell him I wasn’t mad or upset with him because he couldn’t hold on any longer. He almost seemed relieved to know I loved him no matter what. I am so glad we talked about it because it gave us a chance to discuss what signs he would send us after. Sometimes I wish we had done it sooner so we could have focused our energy on those types of conversations instead of on trying to hide the elephant in the room.” – Carla, mother of Xavier
Different families have different ways of talking about dying and death. Children find it easier to understand concrete information than more abstract ideas. For this reason, it helps to explain what happens to a person’s body when it is dying and dies, before you talk about what happens to their soul, spirit or energy. For example:
"When a disease is stronger than a person’s body, and stronger than all the medicines, the person’s body can’t keep working properly. Eventually it will stop working. When a body stops working, it cannot ever start working again, and that means that the person has died."
If you have beliefs or ideas about what happens after a person dies, talk about these ideas together. If you don’t know what you believe, that’s okay. You can talk about what “some people” believe, and ask your child what they believe, or what they hope will happen. Even if you believe that there is nothing after death, you can talk about that or focus on what your child believes, hopes, or wonders about. You do not have to have answers. You can wonder about these things together.
"The best thing I did was have coffee with another mother who had lost her son. That conversation gave me the courage to face the reality that my child was dying and to let him know that it was okay if he wanted to die." – Carla, mother of Xavier
Talk about common misunderstandings
- Sometimes children worry that talking about dying makes it more likely that they will die. Tell them that this is not true.
- Tell your child that people don’t die because they didn’t “fight hard enough” or “try hard enough” to stay alive.
- If the illness is one that not everybody dies from, explain this to your child. For example, the child may be dying from cancer but an aunt who also had cancer, did not die.
When a child is diagnosed with a serious illness, they, their siblings and friends, may have many questions and concerns. Some of the most common concerns are listed here, they are called, the 6Cs.
What is the disease CALLED?
It is important to name the condition, illness, or event that has led to a serious illness. Naming allows an opportunity for children to ask questions and build greater understanding about their condition. Explain how the illness is different from a cold or flu, which many children may be familiar with.
Can other people CATCH this disease?
Tell the child if the illness is contagious or not. If it is contagious, tell them how it is spread and what is happening to stop other people from catching it. For example, say:
“This disease can only spread to another person by sharing fluid from inside their body, like saliva or blood. We can wear masks so that we don’t breathe or swallow any of these fluids, like if you sneeze.”
If the child has heard that the illness has “spread,” explain that it can only spread inside a person’s body, not outside to another person.
Did I CAUSE it?
Tell the child that lots of people think they did something or didn’t do something that caused their own or someone else’s illness. If it is true, tell the child there is nothing they could have done to cause or avoid a disease like cancer, genetic disorder, or most serious diseases. Some children worry that stress, eating habits or activities might have caused the illness. These things are called risk factors. Most risk factors can’t cause an illness by themselves. An illness might happen if a lot of risk factors come together at the same time. Sometimes things happen that no one can control no matter how hard they try or how careful they are.
Can I CURE it?
Explain that there are people all over the world trying to find ways to cure different illnesses. If the child is going to die, explain that this illness is too strong for any medicine that has been found.
How will I stay CONNECTED with you?
Children who are dying want to know that you will remember them. Talk with your child, and their siblings and friends about how and when you will do things to remember them. For example, make a plan for what to do on birthdays or other special days. You could also spend time making things together, such as hand or footprint art, books, scrapbooks, or video or audio recordings.
Who will take CARE of . . .
- Me? Talk about how family members, friends and healthcare providers will help care for the ill child. Talk about who will help care for the siblings.
- My family? Children who are ill worry about who will look after their family. They worry about who will take over their roles or responsibilities when they are too sick, or after they die. For example, some children worry about who will walk the dog, look out for younger siblings, or make sure their grieving parents are “okay”. Siblings also worry about who will take care of them and their family when their parents are busy with the child who is ill, or if their parents are overcome with grief after the child dies. Explain that even though you will be very sad, you and your family members will take care of each other. It will be very hard, but you will be “okay.” Tell your child that even if someone takes over their roles and responsibilities, no one will ever replace them.