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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.

Building Family Ties

Set time aside each week for your family to spend some fun time together, and move the family focus away from TBI. Try these ideas with your family:

  • Have a family meeting. Explain that you plan to hold a family time every week, and ask for ideas for when and what to do (if family members are old enough to participate). Family members could take turns choosing activities.
  • Turn off the video, cell phone, e-mail, etc. during family time. Your goal is to interact with and enjoy each other.
  • Try activities that everyone in the family can enjoy. This might include doing things like playing board games, taking a walk or run, or baking cookies. Find activities where everyone in the family can play a role.
  • In addition to family time, schedule some individual time with each family member. Children need to have time alone with their parent(s). This helps them feel heard and appreciated. Plan an activity with each child—a shopping trip, movies, story time—and schedule it in on a regular basis.
  • To build closer family ties, encourage the children to play simple games with their injured parent. Such games may also help the injured parent practice skills to help in recovery.
  • Think about your family rituals and keep them on the schedule. If you plan elaborate holiday decorations, you may need to cut back this year but you can still celebrate more simply.
Related Information:
Communicating with Your Child
Building Family Ties
Helping Children
Glossary
Frequently Asked Questions
"In the very beginning, I didn’t want to know anything because I was so scared. But a little while later… the doctors would throw out tidbits to me, like he might never speak again and he might never walk again… but I couldn’t understand why. So then I wanted to understand the part of the brain that was injured and why he was having these symptoms or why he was having this diagnosis." -  Patty H.

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