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

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