Recurrent Experiences of Parents and Students After a TBI

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 Department of Education defines brain injury.
• Services provided under another special education category (Learning Disabled, Other Health Impaired).
• Often support broadening the brain injury definition to include acquired brain injury (ABI).

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 at school (i.e. personnel, grade level). This experience contributes to cumulative stress for parents and compromised educational continuity for the student.

Tunnel Vision of Disabilities

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

Pressure of Time

• Students injured in adolescence must obtain special education services before graduation with a standard diploma or “turning 22.” In Oregon, special education eligibility is terminated at the end of the school year if the student has already turned 21.
• 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 can contribute to a ""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 child's 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 a role of leadership in their child's 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 the child’s return home.

Adapted from:

Marilyn Lash, MSW and J. Scott Osberg, PhD. (1999). Parents as Educational Managers for Students with Brain Injuries.  Brain Injury Source Volume: 3(1). Brain Injury Association of America, Inc.