Recurrent Issues for Parents of Students with TBI The Teaching Research Institute-Eugene

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• Targeting Teachers in Treating Brain Injury in Children

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

Conclusions

• 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

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 Teaching Research Institute-Eugene. Reprinted with permission.

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