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The Roller Coaster:
Ronald C. Savage, Ed.D.
Karen J. Morales, C.S.W.
The role of the family in the rehabilitation process is paramount to the child's continued recovery and changing needs. Professionals need to recognize the omnipotent role that families have as "partners" in the care of their children (Blosser & DePompei, 1989, 1992, 1994; Brooks et al., 1986; DePompei & Zarski, 1989; Lash, 1991; Savage, 1991; Waaland, 1990; Williams & Kay, 1991; Ylvisaker, 1992). Families often describe themselves as therapists, information specialists, caregivers, case managers, advocates and an array of other titles. From the very moment the child is injured, the family needs to be included, as much as they choose and are able to be, in the rehabilitation process of their son or daughter. From the emergency room, through the intensive care unit, on into rehabilitation, back to home and community, and through the continuing years, the multiple roles of the family shift, change, and evolve like the creation of a quilt. There is the "big picture" of what has happened and the intricate details of how to make sense out of everything . Any attempt to understand the intricate role of the family in the rehabilitation process needs to address this "...complex interface among the child with family members and their biopsychosocial system." (Waaland, 1990). As the family reacts to the accident itself and experiences the ongoing events, multiple roles and responses emerge (Williams, 1991). This chapter will address the ways families modify, change, and revisit these multiple roles throughout the recovery process according to their children's needs and degree of recovery.
My child is not what she was, nor will she be what she was to become. Neither am I. Neither is anyone else in my family. I never knew that a brain injury could be so devastating or so contagious everyone in our family has been stricken. When you ask about my role in the rehab process, I can only say that it is still evolving. As Janet's needs change, the roles change even though it's been 5 years since her injury. Nothing has remained the same. My role has constantly shifted with her needs, her ups and downs, my own development, and our family's ability to redefine itself. My chief role, however, has been to know my daughter better than anyone else does better than the doctors, the psychologists, the therapists I need to know and love her the best. Otherwise this "rehab process", as you call it, just doesn't work.
A number of family recovery models have been developed. Unfortunately, many of these models were adopted from adultcentered models without integrating the unique needs of children. The seminal work of KublerRoss (1969) and Lezak (1986) proposed similarities between family recovery and terminal illness and family recovery and traumatic brain injury. However, these studies did not necessarily address the circumstances and family reactions to childhood injury. Waaland (1990), Williams and Savage (1991), and DePompei (1992) studied in particular the recovery of families with children with traumatic brain injuries. Their research has found that family recovery after traumatic brain injury to a child has its own unique characteristics and recovery patterns. Issues regarding the child's premorbid history, the family's characteristics, the social/cultural environment, the school environment, the community resources, and the ongoing growth and development of the child all have significant impact on the family's reactions and recovery.
The work of the authors of this chapter has centered around the unique characteristics of families with children, the family's reactions at various stages of rehabilitation, and the long term needs of families as their children continue to develop and grow. The family responses in this chapter are examples of the various reactions parents had at 6 recovery milestones. Unlike the models of recovery for families after an adult sustained a traumatic brain injury, these recovery milestones are better exemplified as a "roller coaster" ride through life than as a linear model of recovery. The families profiled consistently recount the tremendous ups and downs as their child progresses, or does not progress, after his/her traumatic brain injury. Oftentimes, this recovery roller coaster mimics the degree of recovery of the child and/or the developmental stages the child continues to experience. Children are still growing and developing after a traumatic brain injury, however, many of the problems the child experiences do not show up until later on and are often exacerbated by the earlier injury. As children develop, life naturally becomes more challenging and complex. If areas of the brain have been compromised by an earlier injury, the child and his/her family may continually face new issues at every developmental stage. In some ways , traumatic brain injury to a child may be more devastating than a similar injury to an adult and create different and unique issues for families.
FAMILY REACTIONS AT THE TIME OF INJURY
When I got to the emergency room I was panicstricken. A nurse took me in to see my son. I can barely remember her asking me if this was my child. I looked at the bloody face and almost lost everything. "I think that's his hair," I said. I could only recognize my son's long, black hair, but I knew it was Jamie. I just knew it. I remember sitting in a room off the ER. I was numb. Absolutely numb. All I wanted for my son was survival. Please, God, let him live. Let him live. I stayed through the night as the doctors worked on Jamie. After 2 days in the ICU his doctor told me things looked "good," whatever that meant. But the doctor also said that my son had a serious head injury and he may not come out of coma and even if he did come out of coma he would never be the same. Never be the same! What in hell did that mean. Later that day a social worker tried to talk to me. I just sat there and shook my head. I was too overwhelmed. I don't remember a single thing she said. But I do remember overhearing her tell a nurse later on that I was in "denial." Denial? I was in "survival" not denial. I knew exactly what had happened to my son. I just wanted both of us to survive. I was his father for Christ's sake. What other choice did I have?
A family's reactions after the injury to their child and in the first critical days of stabilization and recovery are clustered with panic, shock, feeling overwhelmed, out of control, bewildered, and survival. Oftentimes, information regarding their child's condition and prognosis comes from a variety of sources physicians, nurses, social workers, etc. Families report early on after the injury that too many people gave them too much information in ways that was hard to comprehend and remember. "The doctors said this, the nurses said that, the social worker reported something totally different. It was so confusing. After awhile I stopped listening or believing anybody!" was one parent's response. The vast amount of confusing information families receive can be overwhelming and many unanswered questions surface: what does it mean to evacuate a subdural hematoma? Don't you just wake up from coma and regain your senses? What are all these medications? What are all these wires and tubes for? Why can't anyone tell me something hopeful?
During this critical period it is vitally important that the medical staff speak with the family through one voice. Too many professionals speaking with the family and saying different things is overwhelming to say the least. If the medical professionals are able to work as a team so that they speak in one voice, giving families the important pieces of information in ways that they can understand it, it will make it easier on family members. Periodic and regular status updates on their child, information on traumatic brain injury that they can understand (verbal, written, audio/video), and a designated professional (social worker, counselor) who they can talk with are all essential components in family recovery in the early days after injury. Professionals need to build trust with the family, clarify confusing medical information, and temper hope without stripping it away.
FAMILY REACTIONS AT STABILIZATION AND THE RETURN OF CONSCIOUSNESS
My wife and I were sitting in the day room down the hall when one of our daughter's nurses came to tell us that Maria had opened her eyes. We both ran down to her room I guess expecting that everything the doctors had told us before was wrong. Maria just starred up like a doll, no not like a doll, like a person "not there." We had always talked to her while she was in coma and we asked her if she could see Mommy and Daddy. I guess I expected her to talk too. My wife started to cry. Over the next few days as we watched our Maria just stare into space, I realized it was not over by a long shot. I was more afraid for our daughter now than I had been in the beginning. What if she stayed like this forever? I didn't know how much more my wife and I could take, never realizing that it's now 3 years later and I still ask myself the same question.
Many families break from an almost robotic, protective cocoon once their child starts to regain consciousness. The initial feelings of relief and the knowledge that their child is truly going to survive propels families on an upward roller coaster climb that can unfortunately turn downward as they begin to understand the long road ahead of them. Families report that at this time they were hit with two conflicting emotions, the tremendous relief that their child was coming out of coma and the horrifying realization that the real "recovery" of their child was only just beginning. Unfortunately, television and movies portray awakening from unconsciousness as a miraculous experience after which everything is just fine. Children wake up, eat, talk, walk, and return home. More unfortunately, the return to consciousness can be a painstakingly slow process that once again strips a family's hopes and their abilities to accept the seriousness of their child's injury. Professionals and family supporters at this stage of recovery need to help the family synthesize this juxtaposition of reactions as their child emerges from coma, offer educational and informational services regarding the early stages of regaining consciousness, and enable families to begin to address their fears of long term recovery. As one mother stated, "I am afraid of the future. I wish I had a crystal ball to see what my son will do at five years...but no one has the answer."
However, for those families whose children do not regain consciousness within the first few days or weeks, the pressure at times can become insurmountable. For other families whose children may never regain consciousness, a corresponding grief cycle begins to present itself.
After the knowing that Petra might not come out of his comatose for a long time, my husband had to go back to work. I stayed at the hospital everyday and into the evening. I did not know what else to do. The counselor she tried to get me out shopping or just for lunch, but my heart was aching so bad I thought it would break if I left Petra. After 3 months, my husband only came by maybe 2 evenings at the hospital and on Saturday. I knew he was growing apart. He would beg me to come home. "The other children need you, Alia. I need you!" he would tell to me. I just could not move. I was like frozen just like Petra. I see other families and their children come and go, but not us. "Why God?" I asked over and over. But no answer came. Until Petra died. His heart the doctor said had just stopped working. Later, I think, I can grieve for my Petra and grieve for my family.
For families whose children die from traumatic brain injuries, the grief cycle and stages of recovery, while unique to each family, at least allow the family to grieve the loss of their child. The loss of a child to a family has a tremendous impact on the family and is at times unrecoverable, but the loss is real and can be dealt with as a reality. Conversely, for those families whose children continue to linger in coma and/or in prolonged states of unresponsiveness, the recognized loss of their child and the grief they feel from a distance is not quite real.
We were in the hospital for over 3 months with Johnnie, right through his 3rd birthday. I felt stupid having a party for him, but everybody else was making a big deal out of it. His father showed up for the first time in weeks. Then right after that the social worker said they were going to discharge Johnnie to a skilled nursing place. "Why?" I asked, "How come he can't stay here in the hospital? You all know him. He could still come out of this. You even said so yourself." But we were sent (discharged they called it) to a nursing home nearby. We've been here 6 months and still Johnnie is the same as before. He gets some therapy and stuff, but every time I think he looks more awake I realize he isn't. This is the way he is, probably for the rest of his life. Except the doctor said that adults can stay in coma for a long time, but it's harder for kids because their lungs and hearts are not as well developed. I don't know. What does this "persistent vegetative state" mean? Is my son's life over? Will he ever get better? Do I just go on like this in a state of limbo? What?
The issue of prolonged states of unconsciousness and persistent vegetative state for children is only sparsely researched. Families can become almost unchanging in their own recoveries if the child continues to be unresponsive. Unlike the death of a child which is real and creates its own recovery cycle, the life of a child in persistent vegetative state can create stopgaps that families are unable to manage. Some families will admit their children to facility after facility looking for the "cure", the magical technique that will awaken their child. Social workers and counselors despite their best efforts are not able to disengage families from this course until the family reaches a point of near total collapse (i.e., marriages fall apart, homes are mortgaged to the hilt, siblings end up in trouble). Families who can continue to recover, despite the lingering state of their child, do so with tremendous guilt, anger, and depression, but generally have extraordinary internal and external supports.
FAMILY REACTIONS DURING REHABILITATION
Families whose children are discharged to rehabilitation services often experience a sense of elation along with trepidation. While the "moving on" to a new stage of services brings optimism, leaving the caregivers at the hospital can create a great deal of anxiety. Many families will interpret rehabilitation as restoring their child to what she/he was like before the accident. This concept of complete restoration can create additional hope, but also the fear of knowing that their child may not recover completely lurks in their thoughts.
Walina was hit by a truck walking home from school. After almost 15 days in coma she started to respond. Her doctor recommended this rehab center even though it was 3 hours from home. I was just happy we were going to rehab. When we got here the nurses and the therapists started Walina with 3 hours of therapy a day. In the next few weeks, I was amazed at how fast she was progressing. Pretty soon she was talking and understanding most everything said to her. But when she started to walk, I was ecstatic! As I look back now I guess I drove my case manager crazy with my demands why can't she have more physical therapy? Why can't she get that video test done so we can get her eating? Why aren't there more doctors here like at the hospital? Why? Why? Why? But it was exciting to see her improve. After 2 months I began to see all the thinking problems Walina was going to have, especially in school. She always had special help in school before her accident and now she would need even more. One night after watching T.V. with her I asked her about the show. She couldn't remember anything, not even the name of the show we watched just 5 minutes before. I cried, but I realized then that after her life was spared and she came out of coma, that her life was never going to be the same. With 3 other kids at home, all younger that Walina, I felt overwhelmed. She's only 13 years old. Will she still have friends? Will she ever marry? What will she do for work if she couldn't even remember for 5 minutes. On one hand, I was so happy with all her progress, she looked so good. But she wasn't herself. Would she ever be herself again? I grieved for the Walina I had lost.
As many rehabilitation professionals know, family's reactions to their child's course of recovery are very unique and varied. The inconsistency in their child's recovery sometimes leaves families with the neverendingquestion. A father asked, " If my child is doing this well with this amount of therapy, what if we give him more and more? Won't my child recover quicker and better?" Families see their children doing amazingly well one day only to have difficulty the next day with the same task. Performance and recovery in their child may seem sporadic and gappy, not consistent and following a predetermined progression as many traumatic brain injury scales of recovery portray. The counselors working with the family begin to see progress with the family sometimes parallel similar progress with the child. If the child does well, the family does well. If the child proceeds slowly or has setbacks, so oftentimes does the family. The family recovery roller coaster continues and can suddenly plunge or climb depending on the child's recovery and other outside issues. "If someone needs open heart surgery, breaks a leg or an arm, it's something that can be fixed." commented a parent, "With something like this, you are in the dark. There are no guideposts to recovery. You just don't know what to expect...".
As the acute inpatient rehabilitation stage ends, families will once again find the concept of "discharge" looming over their heads . Although it is a much awaited and celebrated event, feelings of anxiety and trepidation about the future may surface. Questions regarding the readiness of the school district to meet their child' s needs, the availability of support services, and the family's ability to adjust may also arise. It is of critical importance that a family take an active part in the discharge planning process. The role of the case manager/discharge planner should not just involve setting up the appropriate services for the child and family, but should provide guidance and structure to encourage families to ask questions, make phone calls, and network with other families and professionals to familiarize themselves with community resources and supports. As one family member stated"...I have to be my son's strongest advocate. I find talking to other family's most helpful because they are going through it themselves...whatever is out there, you can bet I'll find it...". Ultimately, the family becomes "case manager" for their child as they are the ones who can best identify needs and gaps in their child's life.
We were beginning to get excited. Manny's discharge date was all set. Only 3 more weeks. Not that we hated this place, but going home and resuming our lives after such a long ordeal was exciting. Finally we could get our lives back together again. The therapists had been to our house and to Manny's school. Everything was all set up. We moved his bedroom downstairs to make things easier at first. The school was all set and had an Individual Education Plan (IEP) for him, plus all the teachers had received training. Even though he was still in a wheelchair, so what. He was doing so well otherwise. I guess the real scary part is the future, but when you have been living daytoday for so long I guess you just hope that things will continue to work out. My wife and I are O.K., our other kids are doing better, and I'm finally feeling that we can put all this behind us. I have my son back, that's all I care about.
FAMILY REACTIONS AT DISCHARGE AND RETURN TO HOME/SCHOOL/COMMUNITY
While returning home is one of the most exciting times for families, it can again be one the most stressful times. For many families returning home is as stressful as the initial injury since this is the time in the family's life when reality comes full circle. Despite all the supports that have been set up, despite the plans that have been made, the reality of returning home and leaving the medical community can create a false sense of security. Supports, plans, and best intentions can unravel within a few months after discharge and families are faced with a host of problems they may be underprepared to manage.
The entire community seemed to turn out when David returned home. We had a wonderful party. The cards, the flowers were everywhere. His friends from school and the neighborhood all stopped by. But over the course of a few months, everything stared to come apart. Slowly at first, but bit by bit things were falling apart. David was no longer the "Come Back Kid" as the newspapers had reported him after his injury and rehabilitation. His friends in school didn't invite him out. His behavioral outbursts and impulsivity got him in trouble in school. He was constantly picking on his sisters. His outpatient PT and OT were inconsistent. Then he started to get real depressed. I think it was the first time he fully realized he wasn't the same 16 year old as before his accident. No longer the star athlete and no longer "Mr. Social" with lots of friends. He started to call himself a "retard" and said he would have been better off dead. Despite all his memory problems, he still remembered what he was like before. His psychologist said that it would take David a long time to develop a new "sense of self." I was so frightened for him. I was worried what he might do to himself or to someone else. I had been so happy in the beginning that he was home and alive that I just made myself believe that the hard part was over. The truth is the hard part was just starting. I knew also that my hope to return to work and get on with my own life would also be put on a back burner once again. I didn't know where or even how to ask for help.
Families returning home with their child can again experience the roller coaster effect of initial elation and feelings of security only to see the reality of plans and supports begin to crumble. Many times the initial excitement of returning home and reestablishing the family unit may be shortlived. After a few months the critical issues that children and their families face will begin to emerge. Redefining a new sense of self for the child and the family and maintaining the supports and systems needed for success becomes a fulltime job for families. The reality that the transition home is not a onetime event, but rather a series of new challenges, can again send families into a downward spiral.
FAMILY REACTIONS ONE YEAR POST RETURN TO HOME
The first year after returning to home, school, and community for the child and their family will present challenges that will test the internal supports of the entire family unit. The cycle of "good days" and "bad days" often turns into "good weeks" and "bad weeks" as the family adjusts to the new demands before them. Families will celebrate birthdays, holidays, take vacations, and reinvolve themselves as much as possible in their world prior to their child's injury. Or, unfortunately, many families will become so overwhelmed by the changes that they will collapse into themselves and start living closet lives at home with little interaction with the outside community. The implosion that families may experience can leave them feeling helpless and alone or, hopefully, begin a tremendous healing process.
The best way to describe what happened to our family the first year after DeeDee came home is to call it a "healing year." DeeDee certainly had to heal from her head injury, but so did all the rest of us. Even DeeDee's grandparents. Unless you've been through it, you can never know how contagious this head injury stuff is. We all got "sick" I guess you could say. My wife and I didn't eat right for a year. We rarely were intimate with each other. My other 2 sons, DeeDee's stepbrothers, tried to do so much to help out that they practically gave up everything else in their lives, sports especially. They made sure after school that she got to her outpatient therapies and on weekends that wherever they went, she went as well. I know that sounds great, but my sons became "care takers" for DeeDee, not brothers. My wife's mother just about moved in and took over everything, cooking, cleaning, paying the bills. But in the end I guess we've come through this year O.K. At least we are all still together. I guess if I could do it all over again, I'd have stayed in counseling a lot longer. That will have to be a goal for next year, especially for me and my wife. As for DeeDee, she's doing good. Not great mind you, but O.K. School is getting better. She's still got a couple of good friends who have constantly stuck by her. I suppose our family is better off than others. I'm not really sure why. The thing that sticks in my mind is what our counselor told us at the rehab hospital, "When you get home that's when the rubber hits the road. Give yourself time and give your family an opportunity to heal. Look at your strengths and what works for you and build on that." I still remember that...remember your strengths and what works for you. It saved us.
FAMILY REACTIONS TWO OR MORE YEARS POST RETURN TO HOME
While families who have the internal and external supports do better after leaving the rehabilitation setting, studies of families with children who are two or more years post discharge are rare. What families do report anecdotally is that as their child continues to grow, their child's next developmental milestones may create a new set of problems. Unlike adults with traumatic brain injuries, children's brains continue to develop and the injury to their brain at an earlier age can have a significant impact on their continued development. In addition, despite all the external supports available for families, the family ultimately becomes the long term case manager for their child. Coordinating school meetings, friendships, social events, transitions to work and community, and a host of other systems and services.
Well it's been 4 years now since Jacob's injury. He was in the hospital for over 6 months and has since had two other operations for his arm. He was 6 years old when he fell and got hurt. At the beginning things went along quite well. School went well. His teachers took lots of time with him. He was slow in his reading, but last year he started to really pick up on that. His arm keeps him out of a lot of sports, but he has friends to play with and all. But ever since he turned 10 years, he has had some new problems. Mostly socially. It's like he's not maturing like everyone his own age. My 7 year old, Mike, acts older than Jacob. Whenever we ask Jacob to do anything, he starts all this baby stuff. I know Mike gets real frustrated with him and so do the kids at school Mike says. It's like he's still 6 years old at times. Like I said his school work is better and better, but the way he acts and behaves isn't normal. You can't explain a thing to him or reason with him when he does something he shouldn't. My husband, Jacob's stepfather, gets real short tempered with him. I mean he would never hurt Jacob, but he's had to scold him real hard at times or Jacob won't get it. Otherwise, Jacob looks real good, except for his arm. I just hope that as he gets older his behavior will get better too. But I'm worried.
Many families find that as their child develops and new learning behaviors are expected in school and at home, their child may experience tremendous frustrations. The difficulty in changing from a primary school to a middle school to a high school can be challenging for many children. For children who had sustained a traumatic brain injury, these developmental milestone may present even greater problems as regions of the brain are called upon that were previously injured. In other children, the onset of puberty and the hormonal changes of adolescence can trigger significant emotional and psychological problems that baffle families.
My wife and I are both medical professionals, but we were totally unprepared for the changes that Jenny would experience after her head injury. The hospital and rehabilitation courses were fairly standard. She was in coma for only 3 days, she responded quickly and appropriately with no medical complications. In fact, we even didn't think that rehabilitation would be necessary in the beginning. Now that we are 6 years post injury (Jenny was 7 years old when we were in the car accident), the residual deficits of the injury continue to emerge. After 6 excellent years following her injury home was great, school went well, her peers were very supportive all hell seems to have broken through this past year. No longer is she the quiet. demure girl as before. Now she goes into these rages with no explanation. The first changes we saw in her were at the onset of her menstrual cycle. It was as if Jekyll and Hyde were living inside her. She now experiences panic attacks, cyclic mood swings, temper outbursts, and is inconsistent in her emotional feelings. My wife and I, quite frankly, are very frightened. We've had Jenny reevaluated by a psychiatrist who understands traumatic brain injury and she has begun seeing her weekly. But like I said, my wife and I are totally torn apart. After surviving the most serious ordeal in our lives, our daughter's injury, and then seeing her return to her former self, now this. She is missing 23 days of school each week, her friends think she's crazy, and my wife and I are lost. What does all this mean for the rest of our daughter's life, her future, us?
As children reach new developmental milestones, new challenges emerge that families are often unprepared to understand. The long term studies of children with traumatic brain injuries who are now in their adult years demonstrate that earlier injuries have an impact on their later development (Klonoff et al., 1993). Problems associated with the increasing demands of new learning, organization, work, social interactions, and emotional reactions can persist and even worsen over time. For families this creates an untold anxiety that after seeing their child survive a traumatic brain injury, the years ahead may be more difficult than the years before. As professionals become more aware of the long term needs and supports of children and their families, systems to monitor and provide for these ongoing needs are being created.
Family recovery after childhood traumatic brain injury does not necessarily follow a typical, linear course of recovery. Rather, family recovery tends to roller coaster itself on a track parallel to the child's recovery and the child's ongoing development. For families in the early stages of recovery, information about their child and traumatic brain injury that they can understand through one consistent voice is important. As the child continues with specialized rehabilitation, it is necessary for professionals to recognize that families need to be an integral part of the planning process and that the entire family system needs a tremendous amount of supports. Once families and their children return home and reenter school and community, the best laid plans often fall apart within a few months. Families soon learn that their return home is when reality actually sets in and a whole new array of challenges emerge. Lastly, families who are many years postinjury begin to recognize that the injury to their child was not merely a moment in time. Their child may continually experience new challenges at various developmental milestones as they grow older. Families with children who have sustained traumatic brain injuries know full well the tremendous upheaval and losses their family has had to endure. As professionals, we need to continue to develop familycentered services that enable families to meet, survive, and grow stronger from these experiences.
Blosser, J.L. & DePompei, R. (1989, November). Counseling family and friends of TBI survivors: The path less traveled. Paper presented at American SpeechLanguageHearing Association National Convention, St. Louis, MO.
Blosser, J.L. & DePompei, R. (1992). A proactive model for treating communication disorders in children and adolescents with traumatic brain injury. Clinics in Communicative Disorders, 2(2), 5265.
Brooks, N., Campsie, L., Symington, C., Beattie, A., & McKinlay, W. (1986). The five year outcome of severe blunt head injury: A relatives' view. Journal of Neurology, Neurosurgery and Psychiatry, 49, 764770.
DePompei, R. & Blosser, J.L. The family as collaborator for effective school reintegration. In R.C. Savage & G.F. Wolcott (Eds.), Educational dimensions of acquired brain injury. Austin, TX: ProEd, Inc.
DePompei, R. & Zarski, J.J. (1989). Families, head injury, and cognitivecommunicative impairments: Issues for family counseling. Topics in Language Disorders, 9(2), 7889.
Klonoff, H.; Clark, C.; & Klonoff, P.S. (1993). Longterm outcome of head injuries: a 23 year followup study of children with head injuries. Journal of Neurology, Neurosurgery, and Psychiatry, April 56 (4), 410415.
KublerRoss, E. (1969). On death and dying. New York: Macmillan.
Lezak, M.D. (1988) Brain damage is a family affair. Journal of Clinical and Experimental Neuropsychology, 10, 111123.
Savage, R.C. (1991). Pediatric brain injury and Public Law 101476. Neurodevelopments Newsletter of the Pediatric Brain Injury Resource Center, 1(2),3.
Waaland, P.K. (1990). Family response to childhood traumatic brain injury. In J. Kreutzer & P. Wehman, Community reintegration following traumatic brain injury. Baltimore: Brookes.
Williams, J. & Kay, T. (Eds.). (1991). Head injury: A family matter. Baltimore: Brookes.
Williams, J. & Savage, R. (1991). Family, culture, and child development. Head Injury: A family matter. Baltimore: Brookes.
Ylvisaker, M. (1992, Winter). What families can expect from schools after TBI. Neurodevelopment Newsletter of the Pediatric Brain Injury Resource Center, 1(3),1.
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