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Children with Traumatic Brain Injury: A Parents' Guide

Comments [7]

Lisa Schoenbrodt, EdD, Woodbine House

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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.

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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