Children with Traumatic Brain Injury: A Parents' Guide

Cynthia H. Bonner, Lisa Schoenbrodt (Editor)
Children with Traumatic Brain Injury: A Parents' Guide

Helping Your Child Adjust


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.

Posted on BrainLine June 19, 2009. Reviewed July 27, 2018.

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.

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Where was this page when my Olivia had her TBI??? I have been through hell and back going through this with her. Olivia was 5, a few months short of 6 when I let her spend a day with my ex boyfriend and his daughter. We were on good terms and as we had previously lived together and we were still in the early stages of the breakup where we didn't know if we wanted to get back together or not so of course I trusted my daughter with him...BIG mistake. I was at my apartment when he calls and yells get over here now and hung up. I instantly knew something horrible was wrong. I drive as fast as I can to his house (about 2 miles), when I come around the curve to his house there are police and an ambulance there. I see him and his daughter but no sign of Olivia. I look in the back of the ambulance and I see an image I will never forget, she is there in her purple swimsuit hair in pigtails, blood coming out the side of her mouth and ears, the paramedic with the oxygen bag. I lost it. I never understood out of body experiences till that moment. It felt like everything was in slow motion. I kept screaming at my ex trying to figure out what happened but nothing made sense. On the way to the hospital he said he left the girls in the pool for just a second and when he came out Olivia was in the water her legs were stuck between the ladder and the pool and she was under the water. He says he did cpr but that was determined to be one of the first of many lies. Mind you he is 6'5 and a good 250, his one hand could cover her whole chest. The paramedic stated later that when he got to the scene Olivia wasn't breathing and was a bluish color, that her eyes were fixed and she had a weak pulse. Olivia was sent to the local hospital and then life flighted to Fargo. They lost her several times in the way to Fargo. I wasn't able to fly with her because of all the equipment they had to take to keep her alive on the way. Fargo was about 2 hours from where we lived, I don't remember much of anything on the way there. I just remember praying and making promises to God if he just let her live. When I finally get to the hospital she has so many tunes and IVs in her, she is hooked up to what I learned was the oscillator to keep her lungs from collapsing, she was swollen up to double her size. The doctor came in and said because it was a salt water pool her lungs were pretty messed up and alot of other medical things I couldn't comprehend at the time. He said to put it bluntly he didn't think she'd make it through the night. We just had to take it hour by hour as thats all we had. Long story short she's a miracle and a fighter. She was on two types of life support, a chest tube put in, put in a medically induced coma and still was in the hospital only 2 weeks and 1 day. She had to learn everything all over again. I thank God every day that my baby girl survived, but that being said I never in my wildest dreams would've thought that was going to be the easy part. The little girl I dropped off that day wasn't the same one I brought home after the accident. The one before was so happy with such a big personality that it entered the room before she did. The one before was fearless and loving. The one I brought home was shy, untrusting, angry, with severe separation anxiety. I've been told I'm not supposed to compare the before to the after but it's so hard not to when there is such an extreme difference. There were hour long meltdowns over the right way to zip her coat to her sock rubbing her foot wrong. Anything could set off a meltdown and once it started ya might as well get comfortable because it was going to be awhile. We were always late for school even though we'd start getting ready 2 hours before. Things calmed down for awhile with medication and therapy in which I always felt like I was doing something wrong because for every meltdown she had not many seen them. And because she looked "normal" then what was the problem. What they didn't see was this child hitting me or calling me names or me locking myself in my room because I was crying and at my breaking point because have my own mental issues and now I have to figure out how to deal with hers too. Because what I really wanted to do was beat her ass but couldn't or wouldn't because I knew she couldn't help what she was saying and doing. There was so little information on support groups, her condition, what to expect. I looked trust me. I had no support it was just her and I and I was and still am clueless. She went through early puberty as in she was barely 10, her anger and depression are getting worse everyday. I worry every time I go to work because she has no impulse control. I'm so worried I'm going to come home one day and find something terrible. If anyone is still on this page and has any info or advice I'd gladly use it. Thank you for reading our story.

My two year old granddaughter had a traumatic brain injury when she was 18 months old, she is almost two and 1/2 years old now and she has begun to start throwing up the DR wants to do an MRI is this common

My perfectly healthy 18 year old son became sick all of a sudden and was diagnosed with a rare autoimmune disease, which caused his brain to swell and caused him to have a stroke, he was in a medical induced coma for a couple of months, went from the hospital to an acute facility, to a rehab and then home, his father and I never left his side, we spent 7 months in different hospitals, not knowing if our son would wake up or ever be the same again. A year in a half later my son is still suffering from this horrible tragedy, he is now vision impaired and we don’t know if his vision will come back, he is learning to walk again, we are thankful that he can talk and has all of his memories but it hasn’t been easy. I feel like I can’t live my life until he has his life back, but we don’t know when that will happen. It’s a daily struggle and some days are harder then others. I just pray that my son gets his life back and is able to live the life that he deserves.

Hi there everybody well my head injury happend when i was in grade 2. I was playing in the playground at school and back in the late 70s there was a pole you could slide down about 7 feet from the ground well i was waiting for my turn i was looking if it was all clear when i was bumped and landed on my head vomiting brain swelling was in the hospital for 20+ days they sent me home. I then had a big personality change tried killing myself at the age of 8 kept it a secret from everyone but there was no help from anyone and I'm still not the person i should have been. I feel i been walking through all alone with no help from no one. I acted out horribly in my adolescents and still had no help been depressed all my life and still struggle with the accident i had when i was 8.

I will make this as short as possible, but I hope that even the small bits I do share help. My daughter had just turned 9 when she was in an accident 2 and a half years ago, that caused Diffuse Axonal Brain Injury. There was damage every where including her brain stem. She was life flighted to a hospital that could better treat her. They did not believe that she was going to make it there as she was convulsing and barely breathing. She was put in a medically induced coma and had tubes everywhere. No broken bones, and a minor scratch to her forehead. She just looked like she was sleeping. Days went by and as they lessened the meds, she still did not wake. She would make jerky movements but nothing that was conscious. We were sat in a room with all the doctors and told that they did not expect our daughter to wake. We were told that they wanted to replace her breathing tube with a trach, and we need to think about some type of permanent facility for her. I will save you the heartbreaking and soul crushing talks that my husband and I had regarding what to do next. What would be best for her etc... My daughter was and is my best friend and I didn't want to live without her. I had plans for converting things at home to accommodate breathing machines, and my husband was planning on redoing the downstairs for a hospital bed and whatever else she may need. We weren't ready to say goodbye and we weren't ready to send her away. Those weren't options to us. We would change everything else. That night, after that dark talk with the doctors about placing a trach the next morning, a MIRACLE happened. She coughed out her breathing tube and began to breathe on her own. She maintained her airway, and did all the things needed to keep out the breathing tube and not need the trach. Our daughter has always been a fighter. She climbed mountains (and has the patches to show), played soccer, danced, and was always so active. She fought again for us. A lot happened in between that day and being in rehab. Let me remind you, the doctors never thought she would wake, and if she did, she would be severely handicapped. Not be able to walk, eat, possibly speak. It was confusing because her eyes were open (which was kind of scary because they "looked" off in different directions) and she would have movement (which they say was still involuntary) Well, 39 days after the accident, she started to slowly wake. My husband and I rarely left her bedside except to shower or sometimes I had to do laundry. I slept there every night and my husband was at a house across the road for families with children in the rehab or hospital. We constantly played music, I painted her nails, did her hair, read her books etc... We were both by her bed watching a movie and she started to mumble something. Turns out it was clip my toenails. :) That moment on was a bit of a whirlwind. Waking from a coma is not as lovely and sweet as you see in the movies. She was biting, swearing, punching, and spitting. We were so worried that this would be where the progression would end, but two weeks later it stopped. We were told they thought she was blind at one point, but that was until the doctor put something right in front of her face that she did not like, and she got punched in the face knocking off her glasses. Well, they realized she could see, and was not quite awake at the exam before. Her eyes could see and they were working together again. She had to relearn everything from eating to walking. It all came very slowly, but she did it. She even used the potty again. Everyone was blown completely away. Once she woke, she didn't drag her left leg, that girl ran. Before that, her left side was so weak that it didn't move on its own. They say that is due to the brain stem damage. But when she actually woke, she would tell us the numbers on the doors leading to her room, she knew who everyone was, and she could write, and read. Before she was speaking she would write things on a white board. Something were not real nice, but one day we were doing rehab where you had to put shapes where they go. She was having trouble making the last one fit, and I helped her. She gestured for the white board, and wrote on it, "my best friend is here" meaning me. I cried, the therapist cried, don't think there was a dry eye. I should mention that I called her that the day of the accident. When I was allowed to see her before life flight took her, my husband carried me in because I couldn't walk by myself. I did go up to her and held her hand. She was so warm, and she just looked asleep. I begged her to fight. I begged her not to leave me, and I told her that I needed my best friend. I didn't want to live without her, my best friend. To say a Miracle occurred is a complete understatement. We left the rehab 3 days short of it being two months since her accident happened. We left with nothing but a shower chair. And, she walked out, waving to everyone, and hugging the nurses and therapists as she went. They were all so happy but sad at the same time to see her go. She touches the heart of everyone she meets and you just fall in love with her beautiful soul. So, it's two and a half years later. She is back at school and she tested up to be with her peers again. We sold the house and moved back to what she knew, and for her to have her friends again. I should also mention that we had just bought the old house, 60 acre property, formally know as the "dream house" one moth before her accident. But, that doesn't matter, that's not what she needed so we sold it, and moved back home. Is she without deficits and struggles? Absolutely not. Is there some residual affects of the TBI? Absolutely. She struggles with impulsiveness daily, anxiety daily, her left side is still weaker, and she has some pretty exhausting mood swing, and she has long periods where she will just fixate on something. She has a TBI. She has cognitive impairment. She can't process problems as quickly as her peers. She suffers from insomnia at times. You look at her and think no way she was in an accident and has a TBI. But living on a daily basis, you do. People don't see what we happens in our home. We have built a new patience with her. We needed to. She isn't the same girl as before. This changed her. People that don't quite get it tell ME to be thankful for her, be thankful that she only has the few impairments that she does. Trust me I AM. NO ONE needs to tell me that. I don't take a moment for granted. That being said, it is a daily struggle. I told my story to lift some of you up, and to show that miracles do happen. I feel for you, and I cried reading so many of these comments. My heart and thoughts are with you. No I do not have a severely handicapped daughter with tubes everywhere, but I do have a daughter with a severe TBI and we are learning and relearning how to manage that on a daily basis.

your story sounds a little like mine. my grand daughter, who is 11 had 3 brain bleeds and an aneurysm. She is an epileptic and celiac. the bleeds came from a test we had to see if she qualified for a surgery to help her seizures. The test site clots broke loose. The doctors and surgeons told us she would not recover, They told us also to think about a facility for her. The sent in hospice.

we were on our faces praying. we asked God for a miracle, and he gave us one.

the very next day she opened her eyes. she eventually moved her left arm, then a short time later her left leg. Then came the swallow test, it took a while for that. Then she ate pudding and that was amazing to us. 2 months of therapy in a hospital setting and she came home. Right side leg is in a plastic brace that holds her foot straight so she can walk. She walks with a cane, kind of clunky but she is getting a bit smoother. Right arm is in a sling. no movement there. She has a board with Velcro straps she has to put on her lower right arm every 2 hours, it keeps her wrist and fingers flat. That hand makes a tight fist. its hard to get her fingers straight. She's non verbal.

2 months later. Currently. She says a couple words. If you play music, she will sing the words if she knew them before.
Her personality has changed. She used to be all about Grama (me) and now it's like she doesn' t like me at all. she wanted to LIVE here. Now she wont let me even touch her. Just enough to help her with her pants when she has to go to the bathroom. I realize its not on purpose, Ive asked her if she was angry with me and she looks at me like thatt was a crazy question. She seems to prefer the men in our family. It breaks my heart everytime-but i do know she doesnt even know why she doesn't know why she does it. it.
She mostly communicates with hand signals, but she (today) is saying small phrases.
walks with a cane and a chest strap. I am wondering if she will ever like me again.

If you'd like to reply, Please use my email as i dont know if i can find this page again.


I have a son that is now 24 yesrs of age , he was hurt in April of 1998. I can't tell you how it happened, I believe it wasn't an accident. A he is still out there free as a bird. I worked that day and got sick at work so I had to call my boyfriend to pick me up to go to hospital got out of hospital had to go to pharmacy, stopped at come , I took his daughter with . Got prescription went home.
Getting out of the car my boyfriend said and his arms are just flying up in there to hurry up and get in the house, and I got in the house and my son is laying there on the couch with his eyes rolled up inside and spitting for air. I'm a crazy with them in my arms trying to get him to breathe and the guy never called 911 until I told him to I don't know how long he was laying there for. And the operating room he hadhad a stroke, seizures and they also has put him in a coma and they had to take out his left bone instead is right I did not working or his right leg I mean it works but it's I need braces. We are from Wisconsin in certain town right news and traumatized for 3 years of my grade school.of course I did drink in high school I do not make me and chronic alcoholic which I was not I took care of my kids they don't know that they assuming. You know they said he wouldn't walk they said you might not eat on his own when we finally did get to take him home my mother and I I went to my mother's she came and got me because the guy beat me in the head of the can of beer and he still running free David's been picked on with it like he's a disease .graduate and then went to tech house. After my ma passed totally know support zezo none ball do hardnsometimes I can't breathe. We are now in az my kids my family I think their doctors and think it's okay ain't nothing wrong with him he can be on his own on his own I would love for that to be so. My son isolate don't leave his room he's gaining weight and unhealthy Lakeland care district decided he don't need a guardian and that she never happened so I can't tell him what to do. I can be the nicest person and he screams at me calls me name because of my soon to be ex husband and no choice I had nowhere else to go , I pray all the time everyday. My son... didn't ask for this happened here. I want him to see it better things in life I want him to be happy I want to make sure he's okay before I go I'm the best for him we have no support. Just us not even my other children I mean they're totally 100% alone

I completely understand where you are coming from. My daughter suffered a TBI during a car accident in 2002 when she was 7. I know EXACTLY what you mean when you say " You look at her and think no way she was in an accident and has a TBI. But living on a daily basis, you do. People don't see what we happens in our home.".
School was tough and homework would take 5 or more hours a night, until I put my foot down with her teacher and said "no more, this is not healthy".She had it rough at jobs because people are rude and would throw the two nickels at her because "she should have given them a dime", she's been fired because it took too long to train her, she's been taken advantage of because she's so naïve.
There are some other mental health issues that she's been diagnosed with that are related to her brain injury in that she didn't have the luxury to drink and "experiment" like other teens. She's 25 now, patience, schedules, routines (so she knows what to expect and when) help with her anxiety. But she's still impulsive and doesn't see the big picture of her actions.
I can completely sympathize. I wish I could say it gets easier, but all I can say is: "keep up with the routines, don't be afraid to stick up for your daughter, and keep seeking out those "tips and tricks". We had DSL back then and the internet wasn't really a thing back then, so make sure you're taking care of yourself and maintaining your support system as well.
My biggest struggle right now is that she could use Social Security Disability just for the protection against employers. Since she looks "normal", it's been a struggle.
I wish I could go back in time and set her up on disability back when she was younger and it was easier. Now with her age, I look like an over bearing mom trying to explain things on her behalf.
Best of luck.

y daughter got some severe skull fractures along with brain injury due to a car accident in 2015. The brain injury eventually turned in to Meningitis. Later on, the infection spread to rest of the nervous system.

She was treated at Sunnybrook Health Sciences Centre & Traumatic Brain Injury Clinic. We also consulted a brain injury lawyer in Toronto.

It was very heartbreaking to see a child going through various phases of a brain injury. With God's grace, she is alright now.

My son got tramatic brain injury to the front part of his brain due to a tumor. This has left him with some tough sicknesses he has been dionose with several medical things wrong. He has had 2 surgeries and radiation proton. He was nine when we started with all this he is seventeen now and we have bumps in the road daily. It's been hard on me because I remembered who he was and is today . It's hardest thing I have been struggling with this horrible thing that has happened I am constantly researching anything and everything I can to better understand. He can go into these bad rages. Tears never stop for me. His dad died when my son was two brain. Cancer. Looking for feed back
My son turned 12 this year and he suffered his tbi at only 2 months old.. It is a battle everyday and takes so much energy just to keep up with him and all the things we have him in to help.. I love my son more than anything and would do anything for him.. People that don't have a mentally ill child have no idea the mental strain this plays on us as parents.. Plus I'm overall just sad for him and find myself blaming me for his tbi.. If i was a better mother he'd be normal.. I'm sorry son.. I love you so much...

I am sorry this happened. I am pretty much in same boat.
Guilt is heartbreaking.

Id just like to say when I was 6 years old i was hit by a medical van left with an injury that is effecting my entire life in going though struggles but through everything I'm glad for the people that are around me that support me and care for me you're an amazing mother

I have the same experience has the last post my brother at the age of 3 fell down as he left the washroom after a shower it was a closed brain injury he immediately got seizures and passed motion. He was never diagnosed with any mental disabilities. But after years of screaming if you didn't agree with with him or hurt his over sensitive nature he would snap. In the past year it is absolute horrible the doctors say is normal the church thinls he is normal the hospital won't treat for anything because he behaves normally to them and looks so good. we are waiting for a specialist appointment for him which had to be approved by him because he is above 18+ but every day he yells athe us for everything.

Hi everybody,  I was reading the parents comments and crying so much, because it is everything I felt for the last 2 and a half years. After the accident in 2014 which resulted in the most severe brain injury for my 15 year-old daughter, 5 months in a coma, a year of vegetative state and the most horrific prognoses, Yes, I can relate and understand all those parents so much. I wish there was a site where parents like us could communicate and share our stories, but  so far I did not find one. I needed somebody's support so many times, somebody who knows what they are talking about, but I was alone in the whole world, for a long time. Yes, all true, friends disappeared, nobody around you to give you advice or even say that everything is going to get better. I can see how many of you struggle to continue the right education for your kids after such a severe brain injury, how cruel people can be to our kids because they are different now. I know so much about all those things, I am going to start a site for parents like us to share and communicate and will make my story public finally after nearly 3 years. And yes, there are happy  stories and it will get better, I feel that I can help a lot of parents with information and just friendly advice, because I lived all of it and still living and don't want to give up. I will post my email/ feel absolutely free to write me and ask questions. 

I am so glad to see a website as such to hear and learn...thank you! Our now 9 yr old dghtr was in involved in a HORRIFIC MVA on Dec 30, 2015, Jade just a few days after her 8 then birthday which is Dec 28, and school was to start back from winter break that following Tues, it was a head on collision with a semi truck, our precious baby girl was ejected from the back seat through the front windshield of the vehicle! Jade experienced TBI, along with left femur fracture, a host of surgeries to add, and we spent a little over 6 months in the hospital, and at the time in the hospital it wasn't until in April of 2016, that we found out that jade lost vision in her right eye, she also had several skull stokes so her right side was very very weak, no filling, or movement, she only has central vision in her left eye, as i type im tearing up, because I am now Mommy, and caregiver, my husband and I have our moments still, however to meet Jade will bless your soul, her spirit has been beautiful throughout her journey, we have been with her all the way, she has made great progress, as we continue with all 3 therapies OT-PT-ST, and have now added VT...the TBI is already a great deal, and to add lost of vision in one eye, and very limited vision in the other is even harder, Jade always pray that God blesses her to see again, she is curretly in HomeBound Schooling, and will be for a while, however she misses her school, and friends, we had great support in the beginning, but as time goes on, people, well lets just say we all have our busy lives, I have lost myself from the outside world, due to my devoted time with our Jade, I am grateful that my marriage is still strong, she sees the love, therefore thats why she has such much of it to give, she touches people everywhere we go! she is known at our shops, and just from social media, I have been wanting to take her to a beach, she talks all the time about her trip to Biloxi beach when she was just 6 yrs of age, and she wants to take a Disney Cruise, but our finances are shot, from being in the hospital, as we play catch up with our lovely bills, Jades is a ray of sunshine, she always asking are "you okay", Lord bless her heart, I can say that she never has had any outbursts, now or even in the hospital, PT was her hardest therapy pain wise, as she still is challenged, but Jade always pushes herself to DO IT!, we praised her in the hospital, as she learned to eat again die to her having a G-Tube, and a Tracke, only because of the many surgeries, as she still struggles to eat, eat, she tries, and we cater to her taste buds, I want to try and end here, becasue I have mush more, but I just wanted all who have our Angels that suffer from TBI, and other medical concerns, to keep the faith, believe in Total Restoration (as we do, as Jade does)...miracles DO HAPPEN, as I'm typing to you all, Im preaching to myself!...its okay to cry, it helps, heck it helps me, I wish there was more support out, I don't want to be this Mom that always have this or that to say, I try to stay positive, as much as possible, Jade is my HERO, our HERO, I tell her I wished the people in this world where ore like her, oh my it would be heaven on earth, she always say I know thats right her vision lost was from optical nerve damage which was on her right side, we all know that this TBI has to take its own course, and nerves can and have woken, and reconnect, her scaring has gotten so much better, her hair has grown back 8-10 inches from being totally baldheaded, from her Brain surgery, her Neuro Doc is the BEST! all of her team of specialist are wonderful, and all get so excited at each visit, with her progress, no more wheelchair, she wears a EFO, and sometimes I give her a break from it, so she can be that little Diva, she was before, yes our baby girl is not the same, and yes her life as changed, and yes she is like a baby in a young girls body that is learning all over again, but she is HERE! by the grace of God she is here, the very best to you all

I just found this site as I was looking for information about my 5 year who has a TBI do to accident 8 months ago and I just wanted to say the story on hear has inspired and giving me hope no matter how old they story are god you all

My daughter is now 11, but suffered a mild concussion at two years old when she slipped from the toilet.   We are just now learning that her extreme mood swings and inability to control her extreme emotions may be as an effect of this trauma.  We have always thought she was "strong-willed" and are now discovering this is not the case. It is so difficult to help her and her siblings, as well as ourselves, learn how to cope. There is so little information out there.

Head injuries regular physicians can hardly help them as I am one,  you must see a Functional Neurologist if you want to see results in your local area. I can testify for the great work they do with TBI and anoxic brain injuries in children. 

Thank you for the word functional neurologist . I'm looking for help for my brain damaged son, we've had Nero feedback and it didn't do as much as we hoped it would. I don't know what to do with him he's 29 and I'm just looking for advice.. and that's a great word to start with ♥️ ty

My daughter Joy had a bacterium infection which has a mild impact on her brain . She has meningitis but doctors were able to identify the bacterium after one n half days in icu and treat it . However, her fever persisted and her heart valve was infected with the bacterium and the doctors say that it cannot be removed by the antibiotics, so she had to go through a open heart surgery to put in a metallic valve and be on long term anticoagulant. While recovering in the step down unit, she had a spontaneous bleed, and a clot in her brain. The bleed was so large that she had a midline shift on her brain. She then went through a brain surgery to release the blood to save her life. But she still had blood clog at the back of her brain and later had to do two aneurysm to close of the blood vessel that has thinned off due to the initially mild brain infection. She was in Nero protection coma for about two weeks. Indeed, her waking up was a heart racing journey for us. The first reaction in her face was a frown and almost cry. I try to calm her down. No voice no sound came from her. She was unable to speak or eat or move her right side. Only one of the days she moved both sides, we rejoice but it stopped there. We managed to communicate with her through sign language and sonoflex app. It was a humbling experience seeing her learn how to talk using her tongue movement etc and her right eye was unable to open and eat. The speech therapists see her daily. When she spoke we were so delighted. And talking to her is her brain like before. Then she learnt to eat, vomiting most of the time etc, but she could eat now. Though the right side weakness Is still prevalent . It is very good. She is learning to increase her strength for her right side, her dominant side. Learning to move. Sitting on a wheel chair etc. Maybe can share how to increase mobility in stroke patient Indeed , life has changed for her n out family . We are praying for the touch , Grace , mercy of God to be upon her n our family . That as we journey this path with her, God carrying her n us through .

I have two children with TBI due to a car accident. This happened five yrs ago and it's a struggle daily. My son has emotional problems and my daughter basically has the flat affect. I just dont know what to do now.

I so sorry to hear what you and your son are going through.I dont know if it will mean anything to you but I want you to know I hear your pain and despartion.....In my heart I weep with you and pray for you to the strength to get through another day. Please remember,that somewhere,a stranger you will never meet....prays and wishes you peace. Sincerely, Colette

I feel exactly like the person who wrote the first post.. My son was 16 years old, just got his first job at Smart and Final.. He was the "boy that all parents adored.. He and 5 others went to the the beach, only one came back never to be the same again.. That "one" was my son "Damion" Anoxainal head injury.. Global brain damage.. My son is not the boy I gave birth too November 22 1990. He's a different version..he's 26 now, he can smile, does laugh a little.. Blinks for yes.. Still cannot speak.. Or walk.. Eat..etc.. I now suffer from PTSD from the whole ordeal.. I would like to hear a positive story., I lost friends ..I've lost relationships.. Can't work.. I just miss my son.. The ache in my heart never leaves, just hides for awhile, only to be awaken by the sound of a skateboard, music on the radio (I don't listen to music anymore) a boy with same build color hair., just sends me in whirlwind.. I just want to see a positive story.. But is there really one? I mean you all know the way this destroys you.. Not knowing if he's in pain or if he's hungry or if he has an itch? Or does his eyes burn.. Does his teeth hurt? Omg! It drives me nuts.. Going into his room only to find him wide awake.. Frozen cause he somehow managed to pull all the covers off him.. And he can't pull them back up., these things can make a perfectly sane person? Become insane.. I just need to hear a real good positive outcome., from someone.. Somewhere..

I wish it were as easy as this article makes it seem. But for a severe BI (my 10 y/o son has an anoxic BI, not a TBI), life just turns to existence. You struggle to appreciate every bit of improvement, while living in denial of the horrible mess your life really has become, and suppressing all the overwhelming negativity that threatens constantly to bubble out in front of your kid who absolutely must not see it.
It's agonizing being so busy dealing with your new child that you can't grieve properly for the one who's now gone, and being assaulted daily by images and experiences of other families and their healthy kids, doing family stuff -- still living. It's as if the life has been drained out of life, and everything is just shitty and gray. Every groundhog day blends into the next, and you wonder if this is sustainable, and for how long. The dark thoughts creep in sometimes, and you wonder if they're just dark, or if you're simply starting to have a new and more realistic perspective now. You wonder how others do it. You and your partner are distant, both sleep-deprived and exhausted, emotionally, physically, spiritually... Friends start to drift away, because you're a downer. It's not their fault, they just don't know to be around you, and it's uncomfortable. They're not equipped to provide the precise bits of support you need, exactly when you need them, they have their own stuff going on, and they just sort of fade out of your life.
People stare when you go out.
Everything is complicated. Leaving the house is an epic, so you don't. You stay at home, and the frustration increases. You begin to fight with your partner...

Thank you for the information, I am trying to get through the first year of my son having a TBI and this is the worst part of being helpless and keeping up appearances.

Gavin is 9 and has TBI from shaken brain at 12 days old.  School has been a nightmare.  They treated him like he was intellectually challenged and even put him in Special Education classes until they finally agreed to outside testing by a certified TBI neuropsychologist PhD.  He has a normal IQ,  the school still won't accept the testing.  They focus on his behavior and he is now two years behind academically than his peers.  Now we are left with no choice but to hire an attorney so he can be in general education classes where he belongs.  The school system will be forced to develop a program for TBI students.  Meanwhile, Gavin has been traumatized by the school staff and our family has agonized over begging the school to help educate him.  Gavin is now in counseling as a result of the negligence he suffered at school.  He was disciplined several times daily for his disability, being sent to the office and once even an in school suspension for being insolent. (Not answering a teachers question).  They once said he was like a "wild animal".  I thought I was going to be sick.


I understand how you feel. We had a car accident the day he turned 2yrs he has TBI and a learning Disability and low muscle tone. And outside neurologist diagnosed Tested him we took the test to school. The Dr. told us with the do you know if is that he provided he has rights at school for him to get tested for an IEP once he’s tested he has rights the school has to accommodate him even if the test comes from an outside source. The schools do that because they don’t have that much funding for disability kids and for the schools as well I suggest are you in the area where you live and the district to see what he could do for your son because he has rights as for him being diagnosed. The counselor at school made me aware that he they have rights we have rights as a parent our child have rights as well . She told keep pushing and don’t let them are you otherwise and for me ever got where they kept denying for me to say that I was going to look into an attorney for his rights and that’s how I got them to do the IEP and had a ham in the special ed classes but in regular classes where the special ed teacher goes in there with him about 60% of the day teachers are with him inside regular classes . I hope this information helps you . be strong I’ll be praying for your family. But I was aware ever state has the same law for our children

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.  

I too am in a rural area.. my 29 year-old son has brain damage from to TBIs. After the first TBI he tried quitting pain pills using spice and that gave him more brain damage.. I don't know what to do with him. The state has no facilities for him and the State Insurance is a joke.. SSI won't give him disability because they say if he just would stop drinking he'd be okay.. well the state was able to determine that he's an SMI patient which means he's seriously mentally ill but yet they don't recognize that.. so he can't work, has no income. I'm trying to get help for us to place him. I have to tell him to brush his teeth, how to cook.. he got married young and the woman left him for another woman so he's very angry.. which tends to come out at me when he drinks.. he actually thinks he can have a relationship with me because that's what daughters do with fathers he says.. it's very hard to hear him say that his dad is Darth Vader and why does Dad want to kill him.. I'm just trying to find some answers somewhere to place him that's going to love him I just don't know.. God bless

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
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?

I totally agree I too am looking for information for a toddler 2 1/2 year old near drowning with brain injury.

They want to place her in a rehab more than 4 hours away. I was told that when a bed becomes available, that's where she will go.

Her mom must work. How can she be hands-on with her daughter's rehab and be there for her?

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)
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.
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.

My son had his brain injury in 2004. He was 12 years old; now he's 18, this article was "nothing" compared to our experience. I wish it were that simple. Guidelines and how to'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 truly 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 person with brain injury is "change" will never be the same for the brain injury survivor or the ones who care so much for the person!

My son had his brain injury on the 22nd of November 2020 and he was 12,he just turned 13 and it has been a long journey for me.l hope time will heal

Hold on to God’s unchanging hand. He will not give you more than you can bear.He’s a way maker, Miracle worker, problem solver, mind fixer, doctor in the sick room and a present help in the time of trouble.Be strong, and encourage yourself because the storm will not last always.