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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.

Frequently Asked Questions

What are Common Physical Effects of TBI?

  • Headaches
  • Sleep Changes
  • Fatigue/Loss of Stamina
  • Dizziness
  • Balance Problems (Tendency to Fall)
  • Sensory Changes
More information - Managing Physical Effects of TBI

What Physical Effects May Be Less Common?

  • Spasticity
  • Hemiparesis, Hemiplegia
  • Bladder/Bowel Changes
  • Changes in Swallowing and Appetite; Weight Loss or Gain
  • Visual Spatial Problems
  • Apraxia
  • Seizures
  • Heterotrophic Ossification
More information – Managing Physical Effects of TBI

What are Common Cognitive Effects?

  • Confusion
  • Slowed Speed of Processing
  • Attention Problems
  • Difficulties with Memory
  • Planning and Organization Problems
  • Difficulty with Decision Making and Problem Solving
  • Confabulation
More information – Managing Cognitive Effects of TBI

What are Common Communication Effects?

  • Does Not Speak Clearly
  • Problems Starting a Conversation
  • Word Finding Problems
  • Reading Comprehension
More information – Managing Cognitive Effects of TBI

What Communication Effects Are Less Common?

  • Dysarthria
  • Interrupting or Having a Hard Time Taking Turns in Conversation
  • Topic Selection
  • Writing
  • Non-Verbal Communication Issues

More information – Managing Cognitive Effects of TBI


What Are Common Behavioral Effects?

  • Frustration, Increased Anger/Aggressiveness
  • Impulsivity or Difficulties in Self-Control
  • Poor Judgment
  • Reduced or Lack of Initiation
  • Repetitive Behaviors (Perseveration)
  • Less Effective Social Skills
  • Changes in Sexual Behaviors
  • Lack of Self-Awareness
More information – Managing Cognitive Effects of TBI

What Are Common Emotional Effects?

  • Depression
  • Increased Anxiety
  • Mood Swings (Emotional Lability)
  • Changes in Self-Esteem
More information – Managing Cognitive Effects of TBI

Will our lives ever get back to normal?

The course of recovery after TBI depends on several factors. Your lives may return to “normal” or you may need to learn to adjust to a “new normal.” It can take time to adapt to the life changes after TBI. Although many problems will improve in time, some symptoms may persist throughout the person’s lifetime. Research has shown that many people who experience TBI do lead a life they find satisfying, even if it is not exactly the life they had prior to the injury.


How Should I Organize Medical and Military Records?

A notebook that includes sections for:
  • Personal information – This includes important facts, such as your service member/veteran’s Social Security number, military service record, emergency contacts, and allergic reaction to medications.
  • Military service papers – Keep copies of military service records, etc.
  • Medication log – Write down all the drugs taken, dosages, dates, side effects, and problems.
  • Medical reports, tests, scans – Ask for copies of all reports, scans, and tests, and file them in this section of the notebook. Put CT and MRI scans of the brain on a CD. Keep these to share with future providers.
  • Notes and questions – Include a three-hole punched notepad in your notebook. You can use it to take notes and then insert the sheets in the right sections.
  • Resources and information – This is the place to keep all the forms and information you have received at appointments.
  • Calendar of appointments – Use a calendar with enough room to write all of your appointments.

You may want to keep another notebook or file with the records needed to apply for medical and family benefits or Medical Evaluation Board/Physical Evaluation Board (MEB/PEB). (See Module 4 for more information about the MEB/PEB.) This file will help when you apply for financial aid, a job, or more medical care. When you are not using this file, keep it in a locked place to keep it safe.

This file could include:

  • Social Security card, military records, and insurance cards
  • Power of Attorney
  • driver’s license, birth certificate, marriage certificate
  • school and work records
  • tax returns and assets.


How Can I Tell My Child about TBI?

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.
More information - Helping Your Children Cope


What Can I Do If Caregiving is Just Too Much?
Have a back-up plan for finding temporary or more permanent residential care for your family member with TBI. Discuss quality of life issues with your family and health care professionals. Your choices may include:
Give others permission to care for your loved one. Seek assisted living facilities and board and care homes—for those who have difficulty living alone but do not need daily nursing care. Consider nursing homes, also called skilled nursing facilities—for individuals who need 24-hour nursing care and help with daily activities. Skilled nursing care can also be provided at home by nurses you hire. Check with your case manager(s), VA liaison, and/or military liaison for residential care benefits that may be available to your family member with TBI.


What Can I Expect When My Family Member Comes Home?
Moving back home is an exciting step in the recovery process! Although the transition to home is certainly positive, it is important to be aware that it may also be stressful at times. Some families report that during the first few days or weeks at home, their family member regress and need more time to adapt to a new environment, even if it’s a familiar one. It is helpful to add structure and consistency right away at home by scheduling activities and rest breaks much like the schedule observed in rehabilitation. Recreational and occupational therapists are your best allies in this effort and they will work closely with you to practice community re-entry.
More information - Preparing for the Transition Home & Transitioning Home


What is the Family and Medical Leave Act?

The Family and Medical Leave Act (FMLA) provides service members/ veterans and their spouses who are employed by companies with 50 or more employees with up to 26 weeks of unpaid leave per year to care for a seriously-injured service member without losing their jobs or health care insurance.
For the most current information: www.dol.gov.
For More Information – LINK to Scene 14 - FMLA


What Temporary Housing is Available for Caregivers?
If your service member/veteran is being treated at a military treatment facility (MTF) or a VA Polytrauma Center, you may be able to stay nearby for free or at a low cost.
Housing for family members includes:

  • Malone House at Walter Reed
  • Navy Lodges
  • Fisher Houses at the VA Polytrauma Centers.
Nonprofit organizations may also make some apartments near treatment centers available to families at little or no cost. Check with your POC to find out what temporary housing is available where your family member is being treated.
More information - Addressing Everyday Issues


 

Related Information:
Communicating with Your Child
Building Family Ties
Helping Children
Glossary
Frequently Asked Questions
"He had visual field deficits right after the injury. They’ve since gotten a little bit better, but he still has visual field deficits. He lost hearing in his right ear, so he can’t hear sometimes when I’m trying to talk to him." -  Aimee W.

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