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 They may withdraw from social activities with peers, have mood swings, become withdrawn or disruptive, do poorly in school, and show other behavioral problems.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.
“Thankfully, they’re pretty adaptable, but still they’re kids, and that’s why we’ve had to seek counseling. My son is dealing with secondary post-traumatic stress disorder. He’s very terrified that every time my husband goes in the hospital, he’s not going to come home. So we deal with that. With my daughter, we’re kind of dealing with the teenage issues. Plus she’s pretty angry at my husband.
He’s not who he used to be. You know, I think the key is talking, keeping the lines of communication open, letting your kids express to you if they’re mad, angry, whatever it is. It’s okay. Emotions are okay. Do not hold it in because that’s going to make it worse in the long term.”
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 (see below). 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.
The table on page 34 offers some ways to explain TBI to children of different ages. If your child appears to be depressed for a long time or he or she begins taking on risky behaviors, seek professional help.
“When Tim was starting to read and do word finding, those games were fun activities for the kids to do with him. They took part in his recovery, and I think that involvement was probably the key factor that kept the children from getting resentful, from being isolated. The kids have told me since then that they had wanted to know about things sooner. They thought that we kept a lot of things from them.
I still think that there are some things kids at that age don’t really need to know and they learned things along the way that they were ready for. But they did want to know. They’re very intuitive. Sharing age-appropriate information meant that they still had a little control in their lives, too. They could then process why Mommy and Daddy had to be away and not go to the dark side of their imagination thinking their worlds were falling apart and not have a clue as to why. I think not discussing the issues is probably the worst thing you can do for your children. They don’t like being left in the dark.”
— Shannon M.
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. The table on the next page offers strategies that you can use, depending on the age of your child.
“You know, it’s still a daily thing. TBI is definitely a hard thing to grasp. I think the hardest thing, especially for our teenage son, because maybe he is older, is that his Dad is 37 on the outside, but on the inside he’s younger. Our son is going to continue to get older and get more mature and grow up, and his Dad is kind of where he’s going to be.
I just think a lot of communication is the key. Ask them: Do you have questions? What are you struggling with today? What don’t you understand? We also go to therapy. I stressed to our son that this isn’t going to go away. This is a lifelong disability. We have to learn to deal with it and cope with it, and you can’t do it on your own. You cannot do it on your own.
Getting plugged in to support groups that are geared for TBI, seeking out counselors that know TBI and can give you strategies on how to deal with situations, those things are important. That’s what it’s about for us right now. It’s about getting the mental help and the feedback that we need and realizing that, really, we’re not alone.”
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.
How Can I Communicate with My Child about TBI?
Can differentiate expressions of anger, sorrow, and joy
Communication techniques for parents:
- Communicate using words.
- Use picture books.
- Create simple books with pictures of family members and simple objects that the child understands (hospital, doctor, bed, rest).
- Offer dolls to play with so they can recreate what is happening at home or at the doctor’s office.
More self-secure, can play well with others, tests the rules, ‘magical thinking’
Communication techniques for parents:
- Select books with stories that mirror families like yours to help your child relate.
- Familiarize your child with pictures of objects and concepts related to medical care and health (hospital, gown, doctors, flowers, bed, coming home from the hospital).
- Incorporate play with a child’s ‘doctor kit’ to familiarize your child and symbolize what is happening.
Capable of following rules, enjoys having responsibility
Uncertain of the relationship between cause and effect; parent is the primary source of self-esteem
Communication techniques for parents:
- Use interactive communication — reading books and creating stories with your child.
- Help your child create his/her own “this is our family” album and talk about the photographs and memorabilia.
- Watch movies with story lines similar to what your family is experiencing.
Has a better understanding of logic and cause/effect, less centered on self, able to understand others’ feelings, can empathize
Communication techniques for parents:
- Listen to your child’s thoughts and opinions.
- Ask questions that go beyond yes and no.
- Depending on your child’s level of development and understanding, speak with direct, reality-based explanations that include facts.
- Include the sequence of events involved, and what to expect.
Experience puberty and physiological changes, seek freedom and independence, acceptance by peers is extremely important, develop more intimate relationships, more thoughtful and caring
Communication techniques for parents:
- Speak honestly and realistically.
- Give facts, what is expected to happen including the diagnosis, prognosis, treatments, and expected outcomes.
- Talk with your children, not to them.
- Check in and offer time to discuss concerns frequently.
- Listen attentively.
- Ask questions that can be answered with more than ‘yes’ or ‘no.’
- Stay alert for risky behaviors, acting out, or noticeably withdrawn (if this is a new behavior).
- If risky behaviors are present, seek professional help.
What Are Some Tips for Helping Children Cope?
- Provide information to your children about what to expect before they are reunited with their parent with TBI. For example, explain in advance what they may see in the hospital. Describe how their parent will look, behave, and react before he or she comes home.
- Be flexible. Take your cue from your child about when he or she wants to resume his or her normal routine. Encourage children to stay involved with friends and school activities.
- If your children choose to attend their activities, ask friends or relatives to take them. Ask friends to take over caregiving when you need to go to watch your son or daughter play basketball or appear in the school play.
- Encourage your children to talk about their fears, hopes, and worries. Allow safe and appropriate ways for your children to express their emotions.
- Meet with your children’s teachers to explain what has happened and the effects on the family.
- Encourage other family members, friends, or other important adults in your child’s life to share time with your child and to act as a sounding board, if needed.
- Your children may say upsetting things to you. Just listening can be the best support for them.
- Re-establish routine for your children. Consistent dinner and bed times may help.
- Encourage your children to talk about what familiar characteristics and behaviors of their parent they are starting to see.
- Be easy on yourself and your children. A certain amount of stress is normal.
- Be careful not to set a timeframe with your children for when recovery will occur. Children want it all to happen quickly, and it is hard to predict recovery after TBI.
- Stay alert for changes in their behavior. Get counseling for your child to help him or her cope with grief, especially if the child appears depressed or is adopting risky behaviors.
- Recognize that some children may pull away for a while. Others may regress to younger behavior, becoming very dependent, demanding constant attention, or exploding in temper tantrums. These behaviors should return to normal over time as the child adjusts.
- Teenagers may be embarrassed about their parent with TBI. Rehearse with them how to respond to comments or questions about how their parent looks, behaves, and speaks.
- Sesame Street Workshop has produced videos to help children in military families understand issues related to military service and to help parents communicate effectively with their children about these issues. One video addresses “Changes” that occur when a parent has been injured. You can find these videos at sesamestreetformilitaryfamilies.org.
At the same time that you are providing factual information about TBI, don’t forget to include reassurance that you are still a family and love one another.
“Once we felt that he was doing well enough and could express his needs and I didn’t have to be there for 12 hours a day, we had a discussion. We came to the agreement that I would be with him when the kids are in school, but it would be fine for us not to be there every afternoon afterwards because we wanted the kids to have normalcy. We wanted them to go play at the park and have activities and things in the afternoon. So that really took a load off.”
— Anna E.
How Can I Build Stronger 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.
“When my husband was first diagnosed with TBI, he realized he couldn’t do math anymore. So we had to work on math skills. He and the children worked on doing simple math again and learning algebra. Working out math problems helped us come together again as a family. Doing things together brings you close. Even going to all the appointments together helped us bond. It is a trying time, but it does help bring you back together. We are such a close family now.”
— Lynn C-S.
The questions below can help you reflect on your experience as a caregiver. You can write your thoughts here, copy this page and add it to your journal if you keep one, or reflect on these questions in your journal.
- What questions have your children asked? How are they adjusting to the changes in the family?
- What new routines do you think your family would enjoy that would help your family adjust to the new normal?
The Traumatic Brain Injury: A Guide for Caregivers of Service Members and Veterans provides comprehensive information and resources caregivers need to care and advocate for their injured loved one and to care for themselves in the process. The Guide was developed by the Defense Health Board, the Defense and Veterans Brain Injury Center and the Department of Veterans Affairs.
Click here for a pdf of the full guide, or see it here on the DVBIC site.