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