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Lisa Schoenbrodt, EdD, Woodbine House (page 1 of 7) Page 1 of 7
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 [4]
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 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!
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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