Recurrent Issues for Parents of Students with TBI

Center on Brain Injury Research and Training
Recurrent Issues for Parents of Students with TBI

Transitioning back to school after a brain injury can be challenging for a student — and his or her parents. The more parents know, the more they can help their child. Here are some recurrent issues for parents of a student with a traumatic brain injury

Unfamiliarity with rights under state and federal laws

  • Not well informed about IDEA
  • Underutilization of state and regional resources
  • Little contact with national clearinghouses

Category of traumatic brain injury

  • Unaware of how their state dept. of education defines brain injury
  • Services provided under other category (Learning Disabled, Other Health Impaired)
  • Support broadening of brain injury definition to include Acquired Brain Injury

Physical vs. cognitive recovery

  • Grateful for physical gains
  • Appearance of physical recovery a barrier to recognition of less visible cognitive and behavioral consequences
  • Major concern of parents

Cumulative stress of educating school staff

  • Feeling of repeatedly “starting over” due to changes (i.e. personnel, grade, school) contributes to cumulative stress for parents and compromised educational continuity for students

Tunnel vision of disabilities

  • Parents may be isolated from those of children with other disabilities (e.g. birth related or progressive diseases) perhaps attributable to the emotional trauma of the injury and resulting disability
  • Unable or unwilling to access the experience and expertise of parents of children diagnosed during infancy

Pressure of time

  • Students injured in adolescence must obtain special education services before graduation or “turning 22”
  • Need to explore adult services system re: financial benefits, independent living programs, vocational training or estate planning
  • Daily pressures of caregiving and meeting multiple needs of family members contribute to crisis management environment
  • Coping by avoidance of thinking about future unknowns/uncertainties, yet nonproductive for life planning

Social Isolation

  • Loss of friends
  • Effects on self-esteem
  • Subsequent depression
  • Child’s attempted suicide
  • Parental sense of helplessness due to lack of control over peer relationships

Neuropsychological consultation

  • Difficulty obtaining follow-up testing relevant to educational and behavioral issues
  • Cost of evaluation
  • Lack of working relationships with a local neuropsychologist
  • Previously obtained neuropsychological evaluation may be lacking in useful/practical information
  • Lack of knowledge by school staff on what should be requested
  • Lack of knowledge by neuropsychologist on what the school needs
  • Resulting disappointment in eventual evaluation obtained


  • Initially parents can feel unprepared to assume the role of leadership with the school
  • Trial and error negotiation of the special education system increases frustration and stress among families
  • Families need accurate and timely information about the consequences of brain injury and the special education system
  • Training and information about educational management should be provided within one year after the child’s return home


Posted on BrainLine June 21, 2010.

Sources: Marilyn Lash, MSW and J. Scott Osberg, PhD. (1999). Parents as Educational Managers for Students with Brain Injuries. Brain Injury Source. Vol 3, Issue 1: Recent Advances in Brain Injury Rehabilitation. Brain Injury Association of America, Inc.

From the Center on Brain Injury Research and Training. Reprinted with permission.