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Children with Traumatic Brain Injury: A Parents' Guide

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Lisa Schoenbrodt, EdD, Woodbine House

Children with Traumatic Brain Injury: A Parents' Guide
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Chapter 4

Helping Your Child Adjust

Cynthia H. Bonner, M.S.W., LCSW-C

Introduction

Although no two children or their brain injuries are alike, many children struggle with similar emotions and challenges after TBI. These include:

  • denial that the injury will have a long-term impact,
  • grief over their loss of function and skill,
  • changes in how they relate to others,
  • rustration with the recovery process, and
  • limited awareness of the differences in themselves.

Your child’s ability to cope with or develop strategies for dealing with these changes will vary depending on many factors. Some of these may include your child’s previous coping skills, her intellect and personality, the support available from friends and family, her emotional health, the strength of her relationships, the stage of development she was in when injured, and the extent of the injury.

As a parent, you will play a key role in helping others understand your child. Thanks to your unique experience parenting your child, you will be able to provide professionals with valuable information and insight into your child’s individual traits. During the rehabilitation process, parents’ involvement and commitment are often seen as pivotal to their child’s recovery and return to home and school.

To help you better help your child, this chapter will examine some of the changes that children with TBI commonly face during the acute, rehabilitation, and back-at-home phases of the recovery process. It will also offer suggestions for helping your child cope with and adjust to these changes.

Your Child During the Acute Phase

Once your child’s condition is stabilizing and she is beginning to emerge from coma, you feel some reassurance. There is joy, relief, and hope but still uncertainty. You try not to be overjoyed, as the road ahead is still uncertain, but you experience some slight relief, a small lift of the burden. This was the small step, the sign that everyone has been waiting for. From this moment forward, your experience of parenting your child is changed forever.

In the acute phase, as you are trying to manage your emotional roller coaster, you find yourself asking, “What should I be doing for my child?” Below are some suggestions for supporting your child as she emerges from coma.

Emerging from Coma

Emerging from a coma is a frightening experience for a child. One child recalled the experience this way: “I remember being scared and wondering where I was. I remember there were doctors and nurses and I saw my mom sitting by the side of my bed.” Each child’s beginning steps of recovery are unique and marked by varying memories. The environment is unfamiliar and your child’s memories leading up to the injury may be unclear and uncertain. Usually, there is no memory of the actual injury. Uncertainty and unfamiliarity mark the beginning of the road ahead that your child now faces in coping with the changes in herself.

When your child is emerging from coma, there will be times when she is not alert or responsive. Providing stimulation, support, voice, and touch can be helpful to your child. Even if your child is not responsive, providing this support can help you feel connected to your child. If possible, surround your child with familiar items, including pictures of family members and friends, mementos from home, and familiar music. Try to create a familiar environment within the unfamiliar hospital room. When you are ready, encourage close family members to visit your child. You and your family members should keep talking to your child, providing those familiar voices and reassuring words of love and support.

Your Child During the Rehabilitation Phase

The work begins. Your child may be faced with many physical, cognitive, and emotional challenges. As a parent, you are constantly observing and encouraging your child, hoping for changes, slight improvements that might ultimately lead to larger accomplishments. Your child may experience difficulty walking, managing personal care, expressing wants and needs, and remembering: things that she once did without any thought or effort. Now is the time in the recovery phase where the effort to regain previously mastered skills begins. Demands are placed and goals are set, as a variety of specialists begin challenging your child to reach her potential. Your child begins making small, slow steps toward larger accomplishments.

During the rehabilitation phase, your child may have difficulties with memory, self-awareness, and problem solving. She may have sudden changes in her emotions (emotional lability) or show no emotions at all (flat affect). She may also become easily frustrated, fatigued, and irritable, and have changes in her behavior and personality. These changes often lead to poor social behavior and interactions with others.

Confronted with Changes

Recovery is a gradual and challenging process with no clear endpoint. It varies depending on the injury and the child. As your child begins to slowly emerge and progress, deficits become more apparent. Your child may be discouraged by the slowness of progress and the ups and downs that come with recovery. Seemingly simple activities may now by difficult to perform. She may also be faced with accepting changes in her physical appearance. Often there are healing wounds that are difficult for a child to accept. Hair may have been shaved immediately following the injury. Your child may not be comfortable with changes in her appearance. Additionally, she may be frustrated by her new physical limitations. For instance, a once very active 14-year-old basketball player with artistic talents was very frustrated by the difficulties he experienced in walking, and in using his dominant hand to eat, care for personal needs, and draw as he used to.

Difficulties with Insight and Awareness

Sometimes children are not aware of other emerging differences aside from the physical differences. They may not agree that their academic performance, memory, language skills, behavior, personality, or social behavior have changed. Often children lack insight into their cognitive deficits, as it is easier to see, understand, and focus on rehabilitation of the physical differences. This can be particularly challenging for family members who are able to observe both the physical and cognitive difficulties their child is facing.

Developmental Stages

During the rehabilitation phase your child is working hard to regain a multitude of lost skills. Your child has experienced a tremendous amount of change in herself in a very short period of time. How your child views those changes will likely depend on her stage of development. For instance, an infant or toddler will have little understanding of her differences. Older children and adolescents have more capacity to understand these changes in self that can affect identity, self-perception, peer relations, previously mastered skills, and goals for the future.

Often children and adolescents experience grief, anger, a decrease in self-esteem, and depression, as the loss of skills and changes in personality, social behavior, academic performance, communication, language skills, and appearance become more apparent. During adolescence, children normally struggle with the formation of their identity and have often formulated negative attitudes toward those who are different, less capable, and less “cool.” The discrepancy between an adolescent’s former and current self can be problematic.

What You Can Do for Your Child during the Rehabilitation Phase

During this rehabilitation phase, your family will become central to recovery and the primary support for your child. You can provide professionals with specific information that can’t be gleaned by testing, serving as a window into your child. You know your child best, and have the commitment to become her lifelong advocate. Below are some suggestions that will help you and other family members support your child.

Focus on Daily Successes

During the rehabilitation phase, your child may be discouraged by the slow process of recovery, experiencing periods of ups and downs. Help her to see recovery as a long process by focusing on the daily positives and progress already made. You can compare specific challenges to other times in life when accomplishing a goal took time and was challenging. For example, you might remind her of the time when she practiced her flute every day and took private lessons to prepare for her audition for the school orchestra. Praise your child for her accomplishments since the injury. Be supportive and encouraging while maintaining realistic goals. Try not to evoke additional frustration by focusing on the negative, putting extra pressure on your child to perform, or setting goals that she is not ready for.

It may be difficult to see your child struggle with physical needs as well as cognitive demands. You can help, however, by re-instilling confidence while she is relearning and regaining skills. When appropriate, encouraging her to be independent can help your child feel a sense of self-worth.

Your child’s feelings and motivation may fluctuate as she faces numerous changes during the recovery period. Family members can help by providing consistency, support, and encouragement. Focus on the positive, and minimize critical feedback. Again, you know your child best--what motivates her, her personality, her previous coping style, and her level of acceptance. Communicate this knowledge to professionals who work with your child.

Your role in supporting your child in her daily coping may seem like a high-wire balancing act, but remember that your family is her primary source of support. It is well worth your efforts to do whatever it takes to help your child regain her participation in the outside world.

Managing Changes in Appearance

How much of an emotional impact your child’s physical changes have on her will depend on her age and stage of development. Your child may not like the way she now appears to others and may therefore be uncomfortable with visits by friends and family members. Helping your child understand the importance of family and friends in her life may help to ease her discomfort. In the meantime, it is fine to respect her wishes and minimize the number of visitors until she feels more comfortable.

Help your child feel as comfortable as possible with her appearance. For example, allow her to wear a baseball cap or clothing that covers her injuries if it makes her feel more secure.

If your child feels comfortable discussing her differences (for example, hair, stitches, cuts, scars, braces/splints), encourage her to talk about them and how they affect how she perceives herself. Discuss how these physical changes also take time to heal. Hair grows back and some cuts and scars will fade over time. It may help your child to see photographs of herself before the injury and during the course of recovery so that together you can observe and realistically discuss changes.

If your child does not seem comfortable discussing her appearance, take her lead. Minimizing the attention placed on physical appearance may reduce the importance of this in your child’s mind. Listen to your child if she wishes to talk about her appearance, but do not keep bringing up the topic if it seems to be a sore subject for her. Once again, you know your child best.

Understanding Cognitive Changes

It is often difficult for a child to conceptualize the magnitude of a brain injury and its effects on memory, problem-solving ability, language, and personality. With the assistance of professionals, you can help your child to understand all that the brain controls, while emphasizing the importance of, and length of time for, recovery. Tell your child that just like an injured arm or leg, the brain needs time to heal and to be exercised. Be sensitive to your child’s reaction to these deficits and changes. Allow her to express thoughts and feelings associated with the anger and grief surrounding the loss of skills. Seek the assistance of professionals to help your child feel that it is OK to have such difficult feelings about deficits, the recovery process, and thoughts about the future.

Your injured child’s lack of insight into her actions and behaviors and recently acquired limitations will present new challenges for your family. Where you may have once felt comfortable with your child out of your sight, you may now feel just the opposite. This can be particularly difficult with teens and children with active lifestyles. Again, you are balancing on the high wire. One of the greatest challenges is for you to re-instill a sense of responsibility in your child while providing what may now be a greater level of safety and supervision than ever before.

Without insight and awareness into the reasons for heightened supervision, your child may feel mistrusted. It’s best to continually discuss this issue and help her achieve a sense of responsibility in other, possibly new and creative ways. For example, find things for your child to do around the home where she can feel a sense of responsibility within a safe environment. If it was previously your child’s responsibility to mow the lawn, you might change her responsibility to the equally important chore of getting the mail.

To balance your child’s desire to regain her previous autonomy and freedom around the neighborhood with the need to keep her safe, you may consider asking for help from trusted friends and neighbors. Talk to adults and responsible children in the neighborhood about your child’s limitations and the importance of safety while she is recovering. Ask adult neighbors and friends’ parents to help supervise and monitor the safety of your child’s activities. Maintain open communication throughout the recovery process and continually focus on the length of the recovery process in working toward future progress.

The Peer Network

When a friend suffers a brain injury, peers often struggle with the same emotions that parents and family members experience, including guilt, fear, anger, sorrow, and concern. Your family will need to decide which peers need to know what and who will be the one to share this information with them.

While your child is beginning the recovery process, it is important to involve peers who are responsible and close to your child. Like your family, your child’s friends are wondering if your child will ever be the same and need to learn to accept some of the obvious and more subtle differences. Peers need to be educated about brain injury and recovery . . . to relearn and readjust to your child, their friend.

When it is comfortable for your family, involve peers in the rehabilitation process. How much peers are involved may vary depending on your child’s age and comfort level, as well as distance/accessibility of the rehab facility. Identify a handful of responsible and devoted friends whom you know and trust, and whom you can envision being your child’s eyes and ears once she returns to school. Encourage peers to contact your child in the hospital through phone calls, letters, cards, and face-to-face visits when the time is appropriate. This will help friends to cope with the changes in your child and adjust to and understand her new needs. It will also help your child begin to accept the changes in herself. Educating and exposing peers along the way will help with the inevitable transition to home and school, and with the understanding of differences, limitations, and changes in personality and behavior. If supportive peers understand your child’s needs, this will hopefully lead to a positive and accepting transition back into the community.

Changes in Self-Esteem

As your child becomes more involved in the rehabilitation phase, her self-esteem can suffer. The noticeable changes in herself and her skills, as well as differences in behavior, moods, cognition, and personality can challenge your child’s self-esteem. For example, this is how one parent described the changes in her child:

“Before his injury, Tom was so positive and confident. He was always the first to try something and most things came easily for him, be it school work, sports, artistic endeavors. Since his injury, he no longer has the use of his right arm and hand and requires a cane to help with walking. It takes him longer to process information, and math, which was once easy, is now a chore. He is a different person now, ashamed of what his friends might think of him, frustrated that he can no longer do things the way he used to, and unwilling to try new things. You see, Tom wanted to be an electrical engineer and play basketball in high school and college. I know that when he thinks about his future now it scares him."

The evolution of such changes, coupled with the uncertainty of recovery, is extremely frustrating for a child with TBI and can cloud a previously favorable and confident self-perception.

As a parent, watching your child struggle with the emotional impact of the injury can be very painful and difficult. Often you have shared the same hopes and aspirations for your child. You may feel as if you want to take this struggle away, since your child already has so much to manage.

Again, encouraging and rewarding progress while remaining sensitive to the length of the recovery process will help your child feel supported and recognize her accomplishments. Be patient and communicate with your child. Help her to know that it is OK to talk about her feelings and experiences, and allow frustrations to be expressed. Never try to talk your child out of her feelings. Your child’s feelings are what she feels—they are neither right or wrong. The losses that your child is experiencing are real and will inevitably be accompanied by a variety of emotional expressions and reactions. The support and strength provided by your family will help your child through all stages of the recovery process.

If your child seems to need more emotional support than your family can provide, do not hesitate to seek supportive therapy for her, as well as your family, from psychologists, social workers, or counselors experienced with traumatic brain injury.

Your Child Back at Home

After weeks, possibly months, of recovery in the hospital setting, your child is now ready to transfer her recovery process to the home and community. As a parent, you may feel both positive and negative emotions about this step. On the one hand, you know that your child has made progress and that there is hope for continued success once your child returns home. You will probably become more confident as time at home increases, experiencing some relief and hope. You will also probably welcome the longed-for semblance of normalcy in your life, with your family again reunited at home.

On the other hand, you may feel ambivalent, scared, and worried about how this transition home will play itself out. You know there may need to be physical changes made to your home as well as changes in roles and expectations. You have been part of the team process, working and training closely with professionals who have provided care for your child 24 hours a day. You have come to rely on the support of professionals, and now your family is expected to carry out this lifetime mission back at home.

With practice and experience, families can learn to adjust to the changes at home and continue to support their child. This section details some of the changes to expect.

Changes in Family Roles and Responsibilities

When your child returns home, many of the physical and cognitive difficulties that she experienced during the rehabilitation phase will continue, only now these issues will play themselves out in your family’s everyday life experiences. You may find that the demands and challenges increase and that roles within the family shift. For example, younger siblings may take on more of a big brother or big sister role in the family, with greater responsibilities. Siblings may assist your injured child with her homework or daily care routines. Or they may take on chores and responsibilities for their recovering brother or sister.

I’m Home, I’m OK

Depending on the injury and level of recovery, children with TBI often feel that they have returned to pre-injury life once they are home. Now, more than ever, parents will struggle to balance their instincts to overprotect their child with the need to allow for some independence within the constraints of safety and supervision. Your child may not value or understand the need and importance of safety and close supervision, particularly if she is an older child or adolescent who has previously been granted some independence and freedom. Often when children return home, they feel that this is the permission they have been waiting for to resume previously enjoyed social activities. "I'm out of the hospital, so now I'm better and I can do what I want," they may think.

For children who do not show any physical signs of a traumatic brain injury, yet have cognitive challenges, restrictions on activities may be difficult to adjust to and understand. The reaction of this sixteen-year-old who was struck by a car while crossing the street is typical: “Since I’ve been home from the hospital, my mom won’t let me out of her sight. She won’t even let me ride my bike or go swimming unless she is watching me. She says she’s worried that I may injure my brain again.” It is difficult for children who previously had very active lifestyles and enjoyed such activities as football, soccer, roller-blading, skateboarding, or swimming to now see these activities as risky and potentially dangerous.

In short, although the return home is a positive and significant step in recovery, it often exposes your child to more restrictions and limitations than could be imagined while hospitalized. As your child re-enters her life at home and in school, the discrepancies between what she could do before and what she can do now become more evident.

Your Child’s Losses

As your child adjusts to home, losses that were beginning to be apparent during the rehabilitation phase may intensify and become more real. In addition to the previously discussed cognitive and physical losses, additional losses may begin to surface once at home. These may include the loss of roles and responsibilities within the family, changes in friendships and social groups, and adaptations to goals and dreams for the future.

Once home, the emotions associated with loss will resurface throughout your child’s and your family’s life cycle, depending on the specific loss and how it affects your child and family at a specific point in time. For example, as your child reaches the age when milestones often occur — learning to drive, high school graduation, college acceptance — your child and family may feel a sense of loss if those milestones aren’t reached on schedule.

Peer Involvement and Response

With the early and timely involvement of close friends, these friends will hopefully become an integral piece of your child’s transition back to home and school. Many times, peers are able to cope with the changes in their friend and can provide the support and understanding that your child will need. Other times, friends can become less supportive, unsure how to respond to the numerous changes they see. Often the injured child’s social behavior may be inappropriate or disruptive, or seem immature and even embarrassing to friends. They may think, "Before her injury she was quieter and liked to do different things. Now she is always embarrassing me with her comments and never invites me to do anything." It is often difficult for peers to understand that these changes in their friend are the result of the brain injury and that behaviors, emotions, personality, and moods may now be very different.

Returning to School

Preparing to return to school is yet another milestone in the recovery process that evokes a variety of emotions for children with TBI and their families. Again, there may be positive feelings about this transition, yet, it can be another time of ambivalence and concern. Depending on what kinds of extra help your child will need and what is specifically provided by the school, your child may be better served at a different school. (See Chapter 9 for a thorough discussion of these issues.)

Whether your child returns to her school or transfers to another school, there will be challenges to face. If your child now requires special education services, becoming involved with the special education system may be a new experience for your family. Children often perceive that there is a stigma attached to special education services that reinforces the permanence of differences in themselves, causing a change in identity. Whether or not your child needs special education services, she may be worried about changes in academic performance and about how peers may respond to physical and cognitive changes. On the other hand, your child may not have the insight into her differences, and may view herself as unchanged, believing that everything will be the same. Regardless of your child’s level of insight and understanding into the complexity of such changes, educational services and supports need to be designed for her specific needs.

Social Behavior

As your child rejoins the community, social situations that once seemed natural and appropriate to your child’s development may now present challenges. For example, your once outgoing, social child may now be quiet and withdrawn and appear confused at birthday parties. Or she may be disinhibited and impulsive, blurting out comments without thinking and engaging in risky behavior. Adolescents may struggle with peer interactions, requiring the re-teaching and rehearsing of social skills. Sometimes this can result in social isolation, and a growing distance between your child and her peers.

What You Can Do for Your Child at Home

As described above, returning home presents its own set of challenges for your family and your child. Over time your family will gradually adjust its life to address these changes. This section describes things you can do for your child to help with this transition back to the home and community.

Encouraging Family Communication

One of the most critical steps you can take to help your family weather your child’s transition back home is to facilitate and encourage open dialogue between family members as to how these changes are affecting each individual. Important issues to discuss include:

  • Feelings about changes in household roles, routines, and responsibilities;
  • Siblings’ feelings about your injured child’s new behaviors and how they are managing at school and in the neighborhood;
  • Feelings your injured child has about her siblings being allowed to do things that she is not.

Consider holding regular family meetings to gather feedback from family members. Set a time during the week when all family members are expected to attend and discuss what is and is not working within the home. Ongoing open communication within your family will help to establish a foundation for solving problems, alleviating stress, and strengthening relationships within the family.

Setting Limits and Encouraging Other Activities

There are ways to provide safety and supervision for your child while enabling her to have some sense of control and responsibility. First, encourage activities to take place in your home or the home of a trusted adult so that supervision can be unobtrusively provided. Second, set limits with siblings, friends, and your child regarding activities that are safe and appropriate so that your child does not feel pressured or confused in social situations. Third, schedule time together as a family to explore and encourage new activities or interests that present less of a risk for re-injury. Fourth, continue to communicate openly with your child, allowing her to express her frustrations with restrictions. Lastly, educate and inform others as you learn new ways of keeping your child safe. The more people know about the importance of providing a safe environment for your child, the less likely your child is to be put in compromising social situations.

One mother of a sixteen-year-old sat down with her son and his friends and listed activities that Jimmy was allowed to participate in, activities that would require adult supervision, and activities that were completely off limits. This particular mother developed valuable relationships with friends and neighbors early on in her son’s recovery process through educating and informing. Several months following her son’s return home, she felt comfortable with a handful of trusted friends who understood the importance of safety and were willing to look after her son in social situations.

Managing Losses

Helping your child to manage losses can be a challenging and difficult task, especially when you are likely experiencing and managing your own losses. Establishing a strong support network of family, neighbors, friends, members of religious and community institutions, school personnel, and other professionals is critical. When comfortable, encourage your child to express herself to you and other people in her life.

As mentioned above, there are many times when support from outside professionals can be very helpful. It is worth getting outside help whenever your family does not seem to be coping well, and the neutral, objective perspective and support from a professional might help you over a hump. Additionally, you should seek professional assistance if your child is feeling very distressed, angry, overwhelmed, stressed out, frustrated, depressed, or isolated from peers. In these instances, it is likely that your child’s emotional struggles are affecting the whole family.

One way to seek out professional help is to utilize school resources, including school social workers, guidance counselors, and psychologists. Your child may also benefit from counseling services provided by a professional who is experienced with traumatic brain injury. Additionally, family counseling or support groups may help all family members, as issues of loss and change cycle throughout one’s life and will likely need to be revisited.

Memory Book

Many families use memory books as a tool to help their child understand what has happened to her from the point of injury through the recovery process. Often these books include:

  • photographs of the child taken at different points during recovery;
  • significant dates, times, and events during recovery; and
  • pictures and comments of professionals who have helped the child and family along the way.

By providing a chronology of the events that happened, the memory book can reinforce the seriousness of the injury to your child, let your child see that she is recovering, and help her integrate this trauma into her lifetime experiences. This tool can also be used to encourage conversation with your child and help in educating others.

Some families reserve a section of the memory book or make a separate memory book to help their child remember information needed for day-to-day life. For example, as an aid to remembering, they list names, dates, times, phone numbers, school schedules, and the steps needed to complete daily living tasks or routines within the classroom or home.

Managing Social Situations

As discussed above, children with TBI often experience social isolation as a result of changes in behavior, personality, mood, and awareness. This can be extremely difficult for your child if she has previously had solid peer relationships. If your child struggled with relationships before her injury, making and keeping friends will probably be even more challenging now. In addition, difficulties with insight, good judgment, and social awareness could place your child in vulnerable situations. For example, your child might be pressured to do something that could place her at risk for another injury. If she is feeling anxious to be liked and accepted by the group, she might take the risk.

Again, help your child by educating her friends and school personnel about recovering from, and long-term effects of, a brain injury. If your child’s friends seem to be backing away from her, try offering them more information about your child’s condition to help them understand the changes in her. It may help to talk to the parents of your child’s friends to better understand the friends’ perspectives.

Listen to your child’s frustrations about social situations. With the assistance of professionals specializing in traumatic brain injury, you may need to re-teach and rehearse social skills with your child by role playing or by practicing responses to scenarios that your child may be confronted with. Encourage your child to initiate social activities and conversations with her friends, serving as a role model for appropriate behavior.

Returning to School

Returning to school can be a difficult yet positive experience for you and your child. It will be very important to establish close and frequent communication between your family and school personnel (social workers, guidance counselor, teacher). Communication is the key to better understanding and helping your child. Often a communication log or notebook that travels between home and school is the easiest way for the school and family to communicate and is helpful in tracking and planning for the needs of your child. Parents can ask questions about what is happening at school and write about progress and difficulties that their child is having related to school. Likewise, teachers can use the notebook to record what they observe, respond to questions, and have an ongoing dialog with parents.

Your child may feel anxious about returning to school or beginning a new school. Anxiety could be the result of insight into changes in herself, concerns with changes in academic performance or physical appearance, concerns about peer reactions and acceptance, or worries about being placed in special education or the amount of time missed from school.

It is natural and appropriate for your child to worry about returning to school, yet there are some ways to help to ease this process for your child. First, professionals who are experienced with traumatic brain injury can help by educating peers and school personnel before your child’s first day at school. Professionals can educate staff and students through in-services to help others less familiar with brain injury to better understand your child. Second, your child should have access to a school professional, such as a social worker, guidance counselor, or nurse, who is available to discuss her concerns about returning to school. Third, as a parent, you can ask to meet with school personnel to discuss your child’s educational needs at any time. In fact, you will probably find that advocating for your child will be critical to your own well-being. And finally, it may help for your child to be paired with a “buddy,” a trusted and responsible peer who can look out for your child and help to guide her during the school day. Your child may be able to help choose this buddy. Ultimately, however, the buddy should be a responsible student with whom both your family and school are comfortable.

If your child is placed in special education, she may worry about the perceived stigma. Be available to talk with your child regarding the unfairness and unkindness of this stigma and help her to understand the purpose of special education services. In addition, make sure that school personnel are attuned to this issue and available for your child during the transition period. Maintaining frequent contact with your child’s school prior to her return, at the time of re-entry, and throughout the school year will help you help your child adjust to the changes in herself and her school program.

Community Resources

Community resources can be vital in helping your family and child adjust to your new way of life. Become connected with support groups and organizations where you can share your experiences and learn from others. Become active in your local chapter of the National Brain Injury Association, groups and organizations involved with special needs, and the local educational system. Use the supports of church and community members in bringing understanding and awareness to others. Go online and get virtual support and real information from some of the Internet resources listed in the Resource Guide. Most importantly, establish connections with others who have shared similar experiences. This will open doors for extended emotional support while acquainting you with other families who have faced, problem-solved, and made it through varying phases along this lifelong process. See the Resource Guide at the back of this book for organizations that can help you get started in seeking support.

General Guidelines

Below is a collection of basic guidelines for helping your child adjust following a traumatic brain injury:

  1. Encourage and praise progress.
  2. Involve peers, school, and the community when the time is right for your family.
  3. Listen to your child and provide support.
  4. Serve as a role model for social behavior.
  5. Encourage your child to have relationships with friends.
  6. Explore finding a counselor experienced with traumatic brain injury for your child and the family.
  7. Consider family counseling to address role changes, sibling issues, understanding of differences, and the impact of this trauma on the family life cycle and development.
  8. Encourage your child to focus on one day at a time by setting small goals as steps toward accomplishing larger ones.
  9. Encourage independence with supervision. Be creative with this!
  10. Seek the support and services of community members (professionals, church members, support groups).
  11. Communicate! (with your child, family members, neighbors, friends, professionals, and the school).
  12. Help your child understand her injury and recovery. (Let her know that the brain needs time to heal like other body parts.)
  13. Instill confidence in creative ways--draw on previous skills and interests, applied in new ways.
  14. Create a Memory Book. (Memory difficulties are often frustrating. This will also help to document events and reinforce progress.)
  15. Encourage a normal lifestyle, predictability, and routine as much as possible.

Above all, remember that this is challenging and a lifelong process!

Parent Statements

I prayed to the good Lord to bring her back to me. He didn’t say how she would be. Now I’ve got to deal with what I’ve got.

We’ve got this huge modified, accessible bathroom and a tiny laundry room. The bathroom is like the part of my life devoted to my child’s needs and the rest of my life is like the laundry room — squeezed into a very small space.

Joe has done some things that have my heart floating — like walking to our neighbor’s house independently!

Tommy’s friends were really supportive when he went back to school after his bicycle accident, but now they seem to have moved on. He can’t understand why they don’t want to spend time with him anymore.

Sometimes I wish she could just see her problems so she would accept the fact that she needs help, but most of the time I’m glad she doesn’t see.

The social worker has been the constant, predictable factor in a situation where nothing is predictable. When I’m in her office, I can pause and think and be myself.

He is doing really well now. When other kids ask him why he walks that way or why he can’t use his right arm, he tells them “Somebody very bad hurt me once, but he is in jail now.” Then he says, ”Let’s play.” Because he handles it so calmly, other kids handle it well too. Sometimes he still is upset or confused about it, so we talk and practice ways he can respond to other kids’ questions. He really is a terrific kid and everybody loves him.

From Children with Traumatic Brain Injury: A Parents' Guide edited by Lisa Schoenbrodt, EdD, published by Woodbine House. Copyright © 2001. Reprinted with permission. All rights reserved. Third-party usage restricted. www.woodbinehouse.com/main.asp_Q_product_id_E_0-933149-99-9_A_.asp.

Comments [7]

My child has had 1 major brain injury and 2 secondary.  We live in a very rural small town where there is no help!  As a mom I have been struggling through alone while my husband works.  Rural towns need as much support and help on this issue as well.  

Feb 11th, 2014 1:10pm

Hi, My name is Brian. I am 50 yrs old and I am from Tx.. I have a story that could help thousands of TBI patients The story involves my sister Cindy and begins in Israel about 5 yrs ago. The story begins on the same day that an alleged Terrorist was killed via helicopter strike some 5 yrs ago. My sisters vehicle had diplomatic plates, was rammed by a Bus. Witnesses said there was no effort to slow down or stop on the part of the driver. The official position was this was not a terrorist attack I dont know that I agree with that conclusion. I received word of the wreck some hours later. I was given the impression Cindy would not live through the night. The emergency room doctors did not bother to remove the gauze and other medical equipment etc. used to stop internal bleeding and other trauma, as they were certain she was not going to live through the night. When the morning came my sister began to moan and was immediately rushed back into surgery to remove the items left inside her as they had underestimated her will to live. They had not over estimated her Injuries as she had broken every bone in her body and had severe head and neck trauma as well as TBI. After some time she was transferred to Walter Reed Hospital in Washington DC. She was in a Coma there for a number of months, about 3 months I think. The shock and awe that I experienced at witnessing first hand, the dedication and professionalism at Walter Reed Military Hospital is another story in its self. After Walter Reed had done all they could for Cindy she was moved to a Rehab Center in Fairfax Va.. After some time at the rehab center, 2 months maybe, it was becoming clear that my beloved sister was headed for the "screamers" wing of the center. She had not regained consciousness in that, she could not communicate in any way and her only actions other than sleep or unconsciousness was to moan and scream with pain. My mother who is in her 70s had not left her side. She was determined to be at her bedside constantly despite resistance, and surprisingly was allowed to be, sleeping on a cot at Walter Reed and at the Rehab Center, This was not because the Hospital or Rehab Center Administration policy, it was because my mother would not be denied. My Sisters and my Mothers existence was tortuous. My sister was suffering greatly and my mother who was not in good health, was suffering emotionally and physically. We had lost hope that Cindy would return to us in any fashion and the anguish at her screaming made matters very difficult especially for my mother, fearful that any day the Rehab center would give up on my sister and assign her to the screamers ward. At this point we all prayed for the at least the ability to know where her pain was so we could try to stop it. But it was if she was behind a concrete wall. No getting through. One day after talking to my mother on the phone my wife mentioned to me she had run across an article on the web about an auto accident victim in South Africa. The young man had been in the same condition as my sister Cindy for 5 years. He was only able to moan as if in great pain while never regaining consciousness. His mother who also was by his side constantly asked the nurse if there was anything they could give the young man to sedate him. The nurse crushed a commonly prescribed sedative and mixed it with water and gave it to him by mouth. Approximately 30 minutes later the young man awoke and spoke clearly to his mother. It was the first time since his accident. 5 yrs the young man had not uttered a word. Not only was he able to speak but he could do other things like catch a tennis ball. Unfortunately the young man would lose consciousness after about 15 minutes and retreat back to his previous condition. To this day (to my knowledge) the mother and son have their 15 minutes each day to have normal conversation and some greater measure of quality of life because of this common drug. After reading the article I was convinced this would be a "chance" to break through the concrete wall that entombed my sister. I immediately called my mother and was met with confusion and resistance from everyone associated with my sister. I believed and still believe that my mother was not able to cope with the information, as she was past her limit with overwhelming circumstances that by now included a marriage on the rocks and trying to raise motherless grand kids for her daughter from her bedside cot. I decided I would travel to Washington (Fairfax) and approach the top Doctor at Inova Rehab Hospital a Doctor Patel and present my proposal to give Cindy this drug. I had convinced myself that he would not allow it. I began to try and figure out how I could give it to her myself if he refused to allow it. Upon arrival at the hospital and visiting Cindys room briefly I immediately asked to see Dr. Patel. I explained what my wife had found on the Internet and told him I wanted her to have it. Without a moments hesitation Doctor Patel agreed and only wanted to cut back on some other (similar) medications so as to increase the likelihood of a positive effect. As opposed to oral administration Dr. Patel ordered it administered intravenously and scheduled it 2 days away. Needless to say the next 48 hours were filled with prayerful anticipation. After the first 5 AM administering of the drug there was no dramatic effect. My mother thought she noticed Cindy trying to answer her questions but she did not trust her self as she believed she was too hopeful.. I was ecstatic as I was certain there was a difference in her my sisters behavior. The next administration of the drug was about 2PM with a third scheduled for the evening. Upon the second dose my sister spoke! Faintly as it was, it was thunderous whisper. By the third dose My sister was laughing and singing along with us as we joyfully and tearfully sang Happy Birthday to her. Fortunately for us, Cindy did not lapse back into a coma or unconsciousness and we are able to communicate with her regularly to this day and she is now living in Austin with my mother and has gained a greater measure of quality of life thanks to this miracle drug. I have contacted countless Brain injury Centers and the Drug manufacturer I contacted the Wounded Warrior Project so as to reach out to other Veterans with Brain Injury. Sadly have found no other Dr. Patel to listen to my story. There are thousands of Brain Injury Patients who may be so close to communication with loved ones and a more quality life, and they dont even know it! Even if it only helps only one person and their family awake from the unconsciousness caused by Traumatic Brain Injury it is a worthy pursuit. What if it helps THOUSANDS? Pleas help be the hero and voice these Victims need. Ambien is one the most prescribed medication in America, I feel optimistic it can be the answer to the prayers of countless families of these TBI victims who suffer greatly every day. Thanks Brian 512 939 2058

Jan 16th, 2013 5:25pm

The babysitter hurt my great nephew. The babysitter is awaiting trial. This precious child spent over two months in the hospital, but is now home with mom and dad. These loving young parents are now like 2 strangers to each other; two strangers sleep walking on automatic through each day just trying to stay afloat...he working hard providing a living for the family and she home alone, taking care of their precious baby. Except for visits from OT's, PT's, Nurses and Dr. visits and the visits grandparents can squeeae in between their jobs, they are cruising along dazed and exhausted. Isn't there a 24 hr support line for a family to turn to as they walk through the pain of 'What ifs?' and 'If onlys?' As they worry 'cause their baby is having a hard time that day remembering how to suck a bottle, as they watch their baby sleep peacefully only to wake up, NOT rested and relaxed, but wake up only to have a siezure. As the father mixes the formula with medications to control the seizures, as they wait on pins and needles to see if the next MRI will show a shrinking of the pressure and blood mass on the brain. Who do they cry to? Who will understand? Isn't there an infant TBI website support crisis line for picking up the pieces? Is there any infant TBI support groups out there?

Jul 28th, 2012 9:33pm

This article, which may apply to some does not begin to address the issues of some who are affected by a TBI. Nor does it address the ripple effect that the rest of the family must now endure. Perhaps this was written for a minor TBI (if there is such a thing)

Jan 23rd, 2012 8:06pm

Yes you are right about parents being all alone after a child is injured. It is a very daunting road we travel. Though I do wish that I had something to go on when my son was injured in 2004 at the age of 16.Getting the right education after his TBI was a struggle in itself.

Jan 23rd, 2012 6:44pm

I agree with your comment. I have worked in the healthcare field as a nurse and now have two daughters that have been affected by TBI (Acquired)- The first was through meningitis and the second as the result of fluid on the brain secondary to a motor vehicle accident. Even though we are in the early stages of this with our second daughter the MVA I know that the frustrations will be huge and really what happens is up to her and there isn\'t anything I can do about the outcome. Its very frustrating and heart breaking to watch a child go through.

Sep 22nd, 2010 3:03pm

My son had his brain injury in 2004. He was 12 years old; now he's 18, this artical was "nothing" compared to our experience. I wish it was that simple. Guidelines and howto's...but; when it all hits the fan, a parent is all alone and just trying to piece together what's left of their mangled life. A "new start"....the old person is gone, and a parent has to learn how to relate and help the new person who came out of the ruins of "BRAIN DAMAGE"! It's trully a difficult and you never know from 1 second to the next what will happen! Help from others~not always available!! People; even family and so~called friends tend to drift out of your life. Where once you'd go to the neighborhood Wal~mart and everyone would ask "how is your son doing"?! Now; people you know avoids you and hopes you don't see them. Anyway; it's not this simple! I wish so much it was. And "yes"; I am aware every brain injury is different. The one thing that is the same in every brain injured person is "change"...life will never be the same for the brain injured or the ones who care so much for the person!

Dec 5th, 2009 12:14pm


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