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When Parent TBI(Blast Injury, PTSD) affects Children, What—and How—Do We Talk with our Children?

When Parent TBI (Blast Injury, PTSD) affects Children,  What—and How—Do We Talk with our Children?

A Conversation with Marilyn Lash on Explaining Brain Injury, Blast Injury and PTSD to Children and Teens 

Interview with Marilyn Lash by Barbara Stahura 

Explain brain injury using words your children can understand.

In this updated edition of their book, Explaining Brain Injury, Blast Injury and PTSD to Children and Teens,  authors Lash and Breese again provide solid information that parents can use to help their children and teens understand and cope with a parent’s brain injury, blast injury, or PTSD. Based on extensive interviews with children and teens, it addresses the emotional impact that children experience when a parent is injured. Many of the children’s poignant stories are reproduced in the book in their own words. By understanding the anxieties and fears of children, parents learn how to provide emotional support, communicate with their children, and help them children. This guide is helpful for families at any stage post injury or recovery as it covers children’s perspectives from early hospital care to adjusting to life at home after a parent’s injury.

Why did you believe that such a book was necessary?

Marilyn Lash: There are several reasons. It really grew out of my personal experience. When I was a teenager my brother suffered several concussions playing football, and after the fourth one, he had to drop out of college. Remember, this was fifty years ago, and no one knew about post-concussion syndrome or even much about brain injury. All I knew was that my family was falling apart. We didn’t know why my brother was behaving the way he did. He was so changed and his future was so altered. It totally changed my family.

Also, here at Lash & Associates, we get a lot of phone calls about, “My husband’s had a brain injury and I don’t know what to say to my kids.” Even at brain injury conferences, the experts don’t talk much about the effects of a parent’s brain injury on the kids. The children are hidden in these discussions, yet they are in the crossfire. Their entire world changes. Here at Lash and Associates we have a whole series of books for parents and their children to help them understand why and how their parent has changed.

What are some of the most significant things that can happen to a child or a teen when a parent has a brain injury or PTSD?

Marilyn Lash: For the younger kids, they often mistakenly believe it was their fault. They remember the argument or misbehaving the day before, and they think they caused the injury, which obviously is not true. With older children, there’s often a lot of anger because the parent isn’t the same. They don’t like the way he looks, acts, and talks, for instance. They say things like, “I hate my dad now” or “Mom isn’t the same anymore.” This is all part of grieving the loss of who the parent was before the injury.

It’s not unusual for adolescents to have thoughts like, “It would have been better if he’d died,” or “I wish they’d just get divorced.” Yet these emotions are often unvoiced by the child who may feel guilty about harboring such “terrible” thoughts. So often, it’s such an effort for families to just get through the day, which is understandable, that a child’s grief is not recognized or discussed. What kids say is that they know something is wrong. Not talking about it makes it worse. And when kids don’t know the real story, they often think the situation is worse than it is.

Is the situation in any way different for children of military families where the mother or father has been deployed and comes home injured?

Marilyn Lash: Many of the same issues play out in civilian and military families. But what I’ve heard from wives of wounded warriors is that there’s one major difference. Even before the injury, the kids have already been living in an altered home when a parent is deployed. They’ve already experienced long-term anxiety about a parent’s safety in a combat zone. That anxiety increases when these fears become real and the family is notified of the parent’s injury and the fight for survival begins.

In addition, for service members who are seriously hurt, it’s a very long process of transitioning out of the military to civilian life. It can take two or three years. And if Mom or Dad has been determined disabled and discharged from the service, they might have another major transition in moving from the military base to a civilian community. For children, this is another major transition with changes in friends, schools, and all that is familiar. For children with an injured parent in the National Guard or Reserves, they may have the continuity of living in the same home and community, but few peers or classmates will understand what they are going through.

Why did you include PTSD in the book? It’s not strictly a brain injury.

Marilyn Lash: Because at the time we were rewriting the original book, we knew PTSD was a signature injury of the war, just as brain injury is. In so many cases, the two overlap and have magnifying effects. I’ll just say that what I’ve heard and seen with the overlay of PTSD on TBI is far more complex than anything I had previously encountered. This is incredibly confusing and often frightening for children whose parent now seems like a stranger at times.

Why does the book include blast injury as a separate category, when it is a brain injury?

Marilyn Lash: Blasts are a major cause of massive injuries for service members in Iraq and Afghanistan. They not only can damage the brain, but the percussive waves can damage many organ systems and areas of the body as well. Spinal cord injuries, burns, internal injuries, amputations, fractures – these are just some of the conditions that may result from a blast injury – in addition to brain trauma. We thought it important to use this terminology out of respect for our wounded warriors.

What’s the best way for parents to use this book?

Marilyn Lash: That’s easy – we want them to use it with their children. Parents can read it from front to end and look for areas they see occurring with their children. My co-authorJanelle Breese Biagioni built the exercises that parents can use with their kids. Older children might benefit from reading parts of the book, especially the vignettes from others who have been in similar situations.

Each chapter also has a section with tips or practical strategies for parents, children, and professionals. Our biggest hope is that it helps parents become more aware of their children’s feelings and that they talk with them about those feelings.

A big question when I interviewed the children was, “What about me?” They all felt lost or overlooked in the initial crisis. Parents should remember that it’s never too late to talk with their kids. Parents often feel guilty about having so much to do as a caregiver and household manager, which means that children often suffer from “benign neglect.” It’s not on purpose. There is just so much to do. Even though it may have been a long time since the injury, it still helps to talk with your children. We hope the book is an impetus for parents to have good conversations with their kids.

Is it better to not tell the kids very much about the injury and what it might mean, or to fill them in as much as possible for their age and situation?

Marilyn Lash: Withholding information often increases kids’ anxiety. Talking with them provides reassurance. Give them the information in language they can understand and in amounts they can handle. We have some good story books for this. For instance, there’s Elvin the Elephant Who Forgets about a little elephant who is hit on the head by a falling tree branch. It was written to explain a child’s brain injury to peers, but we’re hearing that many parents are using it to help their children understand a parent’s injury. There are also some great new story books by Shannon Maxwell written just for children on war related injuries. Titled Big Boss Brain and My Daddy is Invincible, these are great tools to help children cope.

Parents should watch their kids and pick up their signals. Once they talk, it’s important for parents to always come back later and ask questions to keep the conversation going. But don’t give children platitudes. Don’t tell them everything will be all right. Because it won’t, and they know it. It’s okay for the parent to say, “I don’t know” in response to a child’s question. Don’t shut your kids out under the guise of protecting them, but do think about how you provide the information.

PTSD is another tough situation. It makes me angry to see these news stories about how Dad comes home from deployment and surprises his little daughter or son at school. Everyone is happy and everything looks wonderful. But no reporter goes back to cover the story when Dad can’t take Susy to Disneyland because he can’t handle crowds, or he can’t take his son to a movie because he can’t sit in a darkened movie theater because of the PTSD.

In the book you mention “secondary losses” after a brain injury. What are they and how do they affect kids?

Marilyn Lash: Secondary losses after a brain injury can include major things like losing your job or getting a divorce. Older kids often start to worry about the family’s finances. If Mom or Dad can’t go back to work, will they lose the house and have to move? The other parent might have to go to work or take a second job, which decreases their already short time available for the kids. There may be no extra money to go to the mall or to hang out with their friends. All this can lead to anger and even bigger worries. If the child wants to go to college, they’ll be wondering if their parents can now afford it.

I’ve found that kids in their late teens or early twenties who have a single parent with a brain injury often feel conflicted when they’re at that age to move away and start life on their own. They’re torn between worry about their injured parent and their own needs for independence. Remember that slogan, “Do you know where your children are?” Well, one young man said, “Do I know where my mom is right now?” Many of these kids were their parent’s caregiver, so leaving that parent is a scary step.

In the book, you describe independence after a brain or blast injury or while living with PTSD as “the willingness to make commitments, take chances, risk failure, hope again and reach for goals,” which, you say, “do not require perfect bodies.” This is a very good definition. Would you tell us more about it?

Marilyn Lash

Marilyn Lash: As I’ve listened to kids, it came from them. It’s linked to acceptance, which is not an end point or an outcome. It’s a lifelong process. Kids say that over time, they come to view abilities and independence differently. It’s not about being perfect but about a balance between challenges and abilities. Many of them talked with pride about how their parent struggled and overcame obstacles and challenges. How they rebalanced and reprioritized, and found their way. The kids knew how close they had come to losing that parent. They also recognized early on how fragile life is and how quickly it can change.

What is the most important message you would send to these families?

Marilyn Lash: To talk to their kids. And even more, to listen to their children, let them know—number 1—that they’re loved, and give them plenty of opportunities to express their fears. Tell them there’s nothing too bad or scary to ask. Remind them that you’ll all work through this together.