The Caregiver's Journey
Listen in as the group members discuss how to explain TBI to children. Tips are shared on how to help kids understand the behavior changes that they might see in loved one with TBI.
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.
I just don’t know what to say to her.
You know we had a hard time explaining Sam’s injury to our daughter’s son, Stevie. He was seven 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.
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.
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?
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.
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 percent.
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.
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.
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.
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.
Michelle, you are doing the best you can in a very difficult situation. Don’t be so hard on yourself.
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.
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.
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.
You know, the other thing that I’m facing is how the kids seem to be lashing out at me more than ever before.
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.
Thank you, Tracy. I’ll keep these ideas in mind.
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.