Helping Children cope with TBI-Affected Parents

When someone you love suffers a traumatic brain injury, one of the most important resources for your recovery journey is a caring, supportive community.

For those whose child has suffered a TBI (traumatic brain injury), these communities exist in great number, and a wealth of resources exist for parents learning to adjust to a child’s changes brought on by TBI.

But when those situations are reversed — when it is a parent who has suffered the brain injury, and a child who must adjust — support and community can be a lot harder to find.

Sadly, many TBI recovery services (from hospitals and outside organizations) do not offer much help to children. The staff of these services are often not equipped to discuss issues in a way that children will understand; consequently, they avoid talking to them. They may also be simply unaware of how a child deals with their parent’s distress, or feel it inappropriate to advise caregiving parents on supporting children affected by another parent’s TBI.

However, without advice, it is difficult for families to know how to help children through this unique emotional experience.

Re-Learning How to Learn

Whether it’s a small child learning to understand what the changes mean for an authority figure or a grown child suddenly confronting an elderly parent’s dramatic shift into needing much more help, it is no easy task.

At the Brain Injury Law Center, we’ve had the honor of speaking directly with two true experts in the matter of adjusting a child to a parent’s TBI — Abigail Maslin and Janna Leyde. What’s more, both these women have written extensively about this very subject.

Abigail’s blog (and upcoming book) concerns helping her husband recover from TBI, and learning how to take care of herself and her young son in the process.

Janna Leyde’s book He Never Liked Cake addresses the subject from the perspective of an adult child, and talks about using her unique talents to help her father recover.

Though both books deal with the subject of helping a child adjust to a parent’s traumatic brain injury, each one comes from a uniquely profound perspective.

This blog post will outline some of the most important points in the process of helping a young child after a parent's TBI, thanks to brainline.org. A later post will offer resources for adult children helping their parent after TBI.

Helping Young Children Cope

Children have their own unique needs during times of stress. No matter how well they seem to be coping, their age and lack of life experience make it much harder for them to make sense of the changes they observe in their parent.

One vital place to start is with a child’s tendency to self-blame. Children often worry that changes to their safe environment are their fault somehow. In a case of a TBI, they may secretly worry that they have caused their parent’s injury in some way.

Children (of all ages) need to be reassured about this. It is particularly important to provide children with information, because in its absence (especially if they are very young), they have a tendency to create their own explanation of events, which can often be more distressing than the truth.

Children need honest, age-appropriate information to help them understand head injuries, and they need an opportunity to express feelings and concerns.

Children’s ability to cope with changes is limited by lack of information. Infants and toddlers, especially, can be confused, unsettled and afraid of the altered parent; this can affect the bond or attachment they had with that parent and can make them feel insecure. As a result, they may become very unsettled, and not recognize or know how to relate to the ‘new’ parent.

Witnessing changes (especially cognitive and behavioral changes) can affect how children go on to develop emotionally. Counseling and other outside help may be necessary for the child’s long-term well-being.

There is a link between the ways that children and their parents cope with stressful events. It helps if adults can model positive coping strategies.

Children can be very affected by the reduced physical and emotional availability of the non-injured parent, who is likely to be preoccupied with their partner’s needs, or who may be too distressed themselves to be able to acknowledge their children’s needs.

For this reason, a caregiving parent should absolutely seek outside assistance in caring for their injured partner, so that they can care for themselves and for their child. The parent’s choices in handling grief and stress will affect their child’s choices, both now and in the long run.

• When practical changes take place—such as financial difficulties that require a change in lifestyle, or role changes within the household (such as being required to help out in new ways, now that one of the parents is disabled), it is normal for a child to primarily worry about how they personally will be affected.

They likely will not display as much empathy as an adult, simply because they are less emotionally mature. Even older children who can better comprehend the situation may develop resentful or bitter feelings, especially if they alter their own life plans in response to the changed family circumstances. (For example, teenagers choosing not to apply to universities far from home in order to be available to help the family.)

This is to be expected in the process of adjustment to the household changes, and should be addressed as part of the emotional healing process.

• It is important to be on the lookout for how the child reacts to outward perceptions of their parent’sTBI.

Children may be ‘stigmatized’ for having a parent who is ‘different’ and may be teased or bullied at school. Teachers may be unaware of the potential impact of head injury on families, and may be oblivious to the issues facing children or how to help them.

Again, children may not openly discuss these problems for fear of causing additional family stress. Instead, they may try to resolve these issues on their own, or ‘act out’ in the form of problematic behavior or poor school performance.

Behavioral Patterns to Look For

The following behaviors have been noticed by professional counselors as being typical of patterns in children who are not emotionally coping well with a brain injured parent:

• Babies and infants (who are often mistakenly thought not to be affected by events going on around them because they cannot yet comprehend them) tend to show problems such as unsettled behaviour, disturbed sleep, and feeding difficulties at times of family stress.

• Pre-schoolers can become clingy (because they feel insecure), may have more temper tantrums, and may lose some of their previously acquired skills (e.g. begin bed-wetting again). They may also develop new fears (e.g. of the dark).

• School-age children (pre-teens) worry about being different from their friends and are vulnerable to being teased about their parent being ‘odd’. They may become sad and withdrawn and fall behind in their school work. They can also show an increase in fears and phobias (in particular, they can fear others in the family coming to harm).

• Teenagers may respond with resentment and anger. They might also become tired (as a result of having to take on additional household tasks) and their schoolwork could suffer. They may show an increase in mood swings and oppositional behavior (this is often characteristic of ‘normal’ teenage years anyway) and stay out of the house and resist family rules and boundaries. Teenagers can also become preoccupied with issues of justice and may wish to seek revenge on any third party involved in the parent’s injuries (they may need support from outside the family in dealing with these strong emotions).

In reading this list, bear in mind that these patterns are not the end of the world! They are simply symptoms that a child is having a hard time emotionally, and that steps should be taken to help them more effectively.

What to Do

So what can a caregiving parent do?

Understandably, adults worry that children might be upset by discussion of their relative’s injury and so try to protect them from this. (It will be common to find that other relatives or friends of the injured parent act awkwardly around the child, or offer vague or misleading information, in an effort to shield the child.)

However, counselors almost universally confirm that children report feeling less upset when they know what is happening.

Naturally, it helps to start by knowing what children of different ages typically understand and misunderstand about head injury.

• Babies and infants (up to the age of 2 years)

Much has been uncovered about a child’s important mental and emotional memory formation in the early years of their life. In other words, your baby/infant knows that something is going on. This is especially true if the injured parent is the mother, and/or is often absent from the home.

While the concept of a head injury may be incomprehensible to very young children, they are aware of simple concepts such as being ‘hurt’ and ‘sick’, so these terms can be used when telling them what has happened to the relative. Having them spend as much time as possible with the injured parent is also very helpful in creating the adjustment.

• Preschool age (up to 5 years)

As language and thinking become more developed, preschool-age children have a greater understanding of what an injury is. However, they are likely to struggle to understand some aspects of head injury, such as the more ‘unseen’ problems like poor concentration or lack of awareness. If the injured parent doesn’t look “hurt” or “sick,” they may not understand that the parent still has ongoing difficulties. They are also likely to expect the relative to make a full recovery, not understanding the concept of a long-term injury.

Egocentric thinking is par for the course in this age group. This can manifest in a few different ways:

1. They are extremely vulnerable to blaming themselves for the accident.
2. Some fear that the “sickness” is contagious, and will instinctively avoid the parent with TBI
3. If they are used to being “the baby” in the family, they may act out from feelings of being neglected or ignored now that someone else is getting more attention.
4. Some will take on the role of “young caregiver”—which can backfire if they are unwilling to recognize the authority of the injured parent

Young School-Age Children (Ages 6–12)

Children in this age group are capable of a more sophisticated understanding of head injury. For example, they will understand both its “seen” aspects (such as physical problems) and its ‘unseen’ aspects (such as cognitive problems) if they are clearly explained.

However, they are still likely to expect the injured person to make a full recovery, and so may need help in understanding the long-term nature of TBI.

While children of this age are likely to be more compassionate, they are increasingly sensitive to what outsiders think, especially friends who will regard them as “different.” They will need help and coaching about what to tell their peers.

Finally, this age group’s growing empathy is where parents will often see “compensating” behavior—trying very hard to be overly helpful or not misbehave in the belief that it will atone for the injury. They may need help in knowing how to behave “normally” towards the injured parent.

Older School-Age Children and Teenagers

Young people in this age group can generally understand the complexity of head injury issues, such as the severity, seriousness, extent of recovery, and permanence of the injury. However, they will need no less emotional support to be able to cope with this information and learn how to navigate the relationship to the parent, outsiders, and their peers in light of it.

What to Say

Before giving your children information, try to ascertain what they already understand about the injury (and what they would like to know). This will help you know where to begin and how to structure information.

Try to prepare what you are going to say in advance of talking to them. Taking into account their age and what they already know), follow the structure below:

• State what a head injury is.
• Say how the head injury specifically affects their relative (include all areas of difficulty).
• Reassure the child that the head injury is not contagious and they are not to blame for it.
• Focus on the injured person’s strengths and abilities, so that a balanced picture is given.
• Discuss recovery and the likelihood of some ongoing challenges the injured parent will face. Balance this with an optimistic statement about the future and reassure the child that the relative will still be involved with them. (For example, you could tell a four-year-old “Daddy’s legs are not working after the accident. When he gets really good at using his wheelchair, he will be able to take you on his lap to the park in it.”)
• Acknowledge that the child may be feeling sadness and fear, that this is normal, and that it will improve.
• Ask the child to repeat what you have said (so you can check for any misunderstandings).
• Ask the child if they have questions.

Be prepared for some direct and difficult questions from the child, and don’t be surprised if you have to repeat information over many days or weeks. It’s okay to start with the bare minimum and offer more over time, so that the child has time to process it. Information giving is an ongoing process.

Most important of all, remind yourself that there is not one correct way to communicate with your child about TBI. In fact, a willingness to talk to them and to listen to their concerns is much more important than what is actually said.

What Else Can Help?

As well as being provided with information about head injury, there are a number of other ways that children can be supported.

• Try to keep child’s daily routines as ‘normal’ as possible.
• While it is important to seek support, it is helpful not to have too many different people looking after your child, as this can make them feel insecure. It is also preferable for them to be cared for in their own home (if possible) rather than going off to relatives.
• Inform the child’s school what is happening—they need to understand the root cause if the child seems upset or shows changes in behavior.

Never forget that children are remarkably resilient and responsive to loving parents. The road to recovery from TBI is difficult, but patience and compassion for your loved ones—and yourself—is the key to healing.

Get the Help You Need

If you or someone you love needs help in a law case involving traumatic brain injury, call the Brain Injury Law Center …