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Telling Your Children About TBI

Telling Your Children About TBI

Tracy
Some adults try to protect their children from the truth because they think they’re too young to understand. But truthfully kids of almost any age are aware that something’s wrong. They want to know what’s happening. They want to understand. Protecting your children by withholding information can actually backfire. It’s not something you want to do. Children have active imaginations and they may actually create a scenario that’s worse than the reality.

So it’s…it’s important. You’ve got to communicate with Emily about what’s happening to Tom in a way that she can understand as a child.
 
Michelle
I just don’t know what to say to her.

Julie
You know we had a hard time explaining Sam’s injury to our daughter’s son, Stevie. He was 7 when Sam was injured, and he was really worried about his favorite uncle. We got some advice from a counselor, and this is what we came up with. We explained to Stevie that the brain is like a command station of a space ship. And if a meteorite hit the command station, the crew wouldn’t be able to control what that space ship does. So a person with TBI may have difficulty walking, talking, hearing, or seeing because the command station is damaged.

Carl
It worked well, and helped Stevie understand. They came out to visit when Sam had been in the hospital for a few months, and Stevie wasn’t scared at all.

Tracy
You know I’ve also heard a computer analogy that may work for kids who are a little older - - like Emily. It’s something like this: knowing that the brain is the computer for the body. And when it’s injured, it doesn’t boot up properly, runs slower, has…has less memory just like your computer at home. And those are terms that most kids are familiar with these days.

It’s just important that kids hear about the injury in terms that they can understand. Has Emily ever broken a bone?

Michelle
Yes, she has. She broke her arm last year when she was skateboarding with our neighbor. She didn’t even cry, and she thought the cast was really cool.

Tracy
Well, you could tell her that while broken bones will usually heal and be just as good as new, the fact is Tom’s brain injury may not heal as completely. A cut may take a few days to heal; a broken bone might take a few weeks. Getting better after a brain injury can take months, even years. And sometimes, that person will not get back to 100%.

Even though Tom might look the same, he may still be injured. As time goes by and Tom recovers, those injuries might include having a hard time paying attention or remembering things that you tell him. He might get tired easily. He might need to sleep. He might actually say things or do things that seem strange or embarrassing. He might shout. He might get angry for seemingly no apparent reason.

Julie
Yeah, Sam went through a time when he was angry a lot. It can be pretty scary, even for adults, not to mention for kids.

Tracy
It’s important to understand where that anger comes from. Many people develop anger of course as a direct effect of the actual damage to the brain. In other words, the parts of the brain that normally stop those angry flare-ups and those feelings have been damaged and they…they just don’t do their jobs as well as they used to.

But the person with TBI may also be mad because he just can’t do things he used to do. His feelings might be hurt because others might be treating him differently than before the injury.

The bottom line is…brain injury changes people. Changes can be confusing. Remind your kids that the changes they are seeing are caused by the brain injury. There’s no way around it - - it’s challenging to put TBI into simple terms that a child can understand. 

Michelle
Tracy, do you have any suggestions on how I can help Travis and Emily deal with our situation? To be honest, I don’t feel very well equipped to help them cope, with something I’m struggling with myself.

Julie
Michelle, you are doing the best you can in a very difficult situation. Don’t be so hard on yourself.

Tracy
Julie’s right. Cut yourself some slack. You’re all going through a stressful time, but this can be particularly confusing and really unsettling for children.

Let’s see now for some specifics - - since Emily hasn’t seen Tom yet, it’s important that you provide that information to her about what to expect before she sees him. For example, you could explain to her in advance what she may see in the hospital. You know how Tom might look, what kind of equipment might be there, all those things that can be a little frightening. 

Now as Tom continues his recovery, encourage the kids to talk about what familiar characteristics and behaviors that they’re starting to see. And you want to be careful not to set a timeframe for his recovery. It’s important that you encourage your kids to talk about their… their fears, their hopes, their worries.

Also, encourage other family members and friends, to share time with your children and act as a sounding board.

When it comes to everyday life, another thing you can do is set up a routine for your kids. Consistent dinner times, consistent bed times... that usually helps. But you also want to be flexible. Take your cue from your child about when she wants to resume her normal routine. And when it’s possible, encourage the kids to stay involved with their friends and their school activities.

Michelle
That’s been hard, because Emily’s got an active schedule. Before Tom got hurt, I spent a lot of time just running Emily and her friends around.

Tracy
Oh I understand, Michelle. But now you know as a caregiver, you…you might not be as available to drive your kids places. But if your kids want to attend their activities, ask friends, ask relatives to take them. Don’t be afraid to ask. You can also ask friends to take over your caring for your loved one when you need to go watch your child in a game or…or a school program. And it might give you a much-needed break. Oh and when it comes to school, it’s a good idea to meet with your children’s teachers, explain what’s happened.

Michelle
You know, the other thing that I’m facing is how the kids seem to be lashing out at me more than ever before.
 
Tracy
You know sometimes your kids may say upsetting things to you. Just listening can be the best support for them. You know you’re all in this together, but sometimes it’s easiest to take out our grief and our anger on those that we’re the closest to.

Now with that in mind, you want to try to stay alert for changes in your kids’ behavior. And you might want to get counseling for the kids to help them with their grief, especially if they appear depressed or they are adopting those risky behaviors.

But recognize that some kids may pull away for a while. Others may regress to a younger behavior, becoming very dependent, demanding constant attention, or even exploding in to temper tantrums. These behaviors should return to normal over time as your child adjusts. Teenagers may even be embarrassed about their parent with TBI. You need to talk to them about how to respond to comments about how their parent looks, or behaves, or speaks. 

There is a nice resource for younger kids that was developed by Sesame Street Workshop it’s called “Changes.” It’s not specific to TBI, but it does address some common challenges that kid may face when a parent has been injured. You’ll find the web address for the videos in your Guide for Caregivers.

Michelle
Thank you, Tracy. I’ll keep these ideas in mind.

Tracy
You know Michelle, helping Emily, and Travis to you know understand what may happen in the coming months it will help them deal with their fears.

Okay why don’t we… why don’t we take a little break. We’ll pick up in a few minutes. Okay.

Communicating with Your Child

Having a parent with TBI can be frightening for a child who looks to his or her parent to provide strength and safety.

The parent with TBI may no longer act the same as he or she did before the injury. Your family member/parent with TBI may be angry, depressed, or uncertain.

As a result, the special parent-child bond that existed previously has changed.

Children may be confused and upset about what is going on. This could be due to worry about a parent’s condition or concerns about changes in their parents’ relationship. It could also be due to financial strains, or simply adjusting to the new “normal.”

It is important to recognize that your children are grieving, just as you are. They may withdraw from social activities with peers, have mood swings, become withdrawn or disruptive, do poorly in school, and show other behavioral problems.

Children also need time and space to be kids. Communicate with your child that he or she is not to blame for the TBI.

Some children may need to take on some caregiving tasks for the parent or for younger children in the family. Children who care for parents or other relatives experience considerable conflict over the reversal of roles between parent and child.

Make sure any tasks that your child takes on—household chores, for example—are suitable for his or her age. Strive as much as possible to find other adults to help you, rather than relying on your children to play a major caregiving role.

You can help your children by explaining TBI in a way that they can understand. Ask a health care provider to talk with your children.

Build new family routines, and keep an eye out for signs that your child is not coping well.

If your child appears to be depressed for a long time or he or she begins taking on risky behaviors, seek professional help.

How Can I Tell My Child about TBI?
It is difficult to explain TBI to a child. Yet it is vital to tell your child what is going on. Some adults try to protect children from the truth because they think they are too young to understand. Children of almost any age are aware that something is wrong and they want to know what is happening.

Communicate in an age-appropriate way what has happened to your family member with TBI. Protecting your children by withholding information may backfire. Children have active imaginations that may create a scenario worse than reality.

How you tell your child about TBI depends on the age of the child.

What Are Specific Ways to Explain TBI to a Child?
Here are some suggestions for how to explain TBI to a child:

  • The brain is similar to the command station of a space ship. If a meteorite hit the command station, the crew would not be able to control what the space ship does. If the brain is hurt, it may send out the wrong signals to the body or no signals at all. A person with TBI may have a hard time walking, talking, hearing, or seeing.
  • The brain is the computer for the body. When injured, it doesn’t boot up properly, runs slower, has less memory, etc.
  • A broken bone will usually heal and be as good as new. A brain injury may not heal as completely. Even though the person with the injury may look the same, he or she may still be injured. These injuries might include having a hard time paying attention or remembering what you told him or her. He or she may get tired easily and need to sleep. He or she may say or do things that seem strange or embarrassing. He or she may get angry and shout a lot.
  • Many people develop anger as a direct effect of the damage to the brain. In other words, the parts of the brain that normally stop angry flare-ups and feelings have been damaged and do not do their jobs as well. The parent with TBI may be mad because he or she can’t do the things he or she used to do. His or her feelings may be hurt because others treat him or her differently than before the injury.
  • A cut may take a few days to heal, a broken bone a few weeks. Getting better after a brain injury can take months or even years. Sometimes, the person will not get 100 percent better.
  • Brain injury changes people. These changes can be confusing. Try to remember that the changes you see are caused by the brain injury. You can still love and care about the person.
     
Related Information:
Communicating with Your Child
Building Family Ties
Helping Children
Glossary
Frequently Asked Questions
"A really super thing for us in terms of communicating with the hospital staff—and the hospital already had this installed in the room—is a big dry erase board. Some people use it and some people don’t. We use it to make a list of all the things we want to talk about with the doctors. That way, if I’m not in the room when the doctors come by on their rotation, they’ve got the big list right there and they can see it clearly. That helps keep the communication going." -  Anna E.

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