Educating the Student with Brain Injury: Information for Family Members

QUESTION:

My daughter is a high school freshman and I am wondering what the next step will be after she graduates from the public school system. What should I be doing at this point to plan for her transition from school to the adult world (e.g., contacting government agencies, human service organizations, disability programs, etc.)? Does the school have any obligations in the transition process?

ANSWER:

The federal law for education, The Individuals with Disabilities Education Act, includes transition planning as a service under special education. This process needs to begin as early possible. Most states require it to begin when students with special needs are either 14 or 16 years old.

The goal of transition planning is to help your daughter develop the academic, vocational and life skills that she will need as she moves from adolescence to adulthood. Depending on your daughter’s abilities, this may mean exploring options for school or vocational training after high school. It also means thinking about where and how she will live as an adult.

There are many federal and state programs for adults with disabilities that your daughter may be eligible for in the future. You are wise to begin leaning about them now by collecting information. There are many agencies that can provide you with written information and have special educational programs for families. The Federation for Children with Special Needs has a national network of Parent Training and Information Centers. Contact the Federation at (617) 482-2915 and ask for the name, address and telephone number of the Center closest to you. The Brain Injury Association in your state may also have information. If you do not know their number, you can find them by contacting the national organization in Washington, D.C. at (202) 296-6443. Your local Social Security Office also has written information on programs for children and adults with disabilities.

QUESTION:

When my son returns to school, he will need more rehabilitation therapies, like speech and physical therapies, before he can even think about a full day of class work. What is the public school’s obligation at this point? How would the school address my son’s need for therapies and specialized classroom instruction?

ANSWER:

Ask that your son be evaluated for special education as a result of his brain injury. The federal Individual with Disabilities Education Act includes a specific category for students with traumatic brain injury. This recognizes that students with brain injuries may need special help in school. After a formal referral is made, the school will have an educational team evaluate your son to determine if he has special education needs as a result of the brain injury. He may also need related services, which can include physical, occupational and speech therapies, psychological services, counseling, transportation and other services. If eligible for special education, this team will develop an educational plan for your son that will identify specific goals and resources.

If your son is currently in a rehabilitation program, they can help begin this process by meeting and planning with the local school. Having your son evaluated by a neuropsychologist before leaving rehabilitation can provide important information on how the injury has affected your son’s learning and help prepare the school. Many educators have little experience or training with brain injury so it is important for the rehabilitation staff to work with the school to prepare them to plan together for how best to meet your son’s special needs.

Contact your local school’s Director of Special Education, or your state Department of Education, and get a copy of the guidelines on special education in your state.
The question and first answer below should already be on the site under "Pediatrics" and under "Educating the Student with TBI - Info. for Parents." Please make sure that is the case. Add Answer #2 for both categories, too.)

QUESTION:

I have a child who sustained a brain injury and is currently hospitalized. Some of the medical professionals have suggested that a child can have a better prognosis for recovery than an adult due to the resiliency of youth. Still others have said that just as each individual is unique, each injury is unique. Should I be optimistic about my child’s recovery due to her young age, or is it unrealistic to hang my hopes on this factor alone?

ANSWER:

At this stage in your child’s recovery, it is essential to continue to hope for a positive outcome. However, young age alone is not a protective factor against future problems. Researchers used to think that the brain was more "plastic" at younger ages and able to compensate for injury during the course of development. More recent investigations indicate that younger children who sustain moderate to severe injuries are more likely than older youth to display impaired language and memory functioning; inattention and hyperactivity; slower recovery of motor, visual-spatial, and somatosensory skills; and decreased novel problem solving. Some evidence suggests that disruption of basic skills in the early years of development (e.g., language, memory, or motor skills) interferes with later developing, higher order skills (e.g., reasoning, problem solving). Even children who seem fully recovered from injury may experience "late cognitive effects," or the appearance of academic problems and declining skills over time. Such apparent declines in functioning may be due to delayed recognition of cognitive problems or to increasing performance demands as the child grows older.

The studies that have been conducted cannot predict your child’s specific outcome. The main thing to remember is that your child may be at risk for learning problems, particularly if the injury was moderate to severe. If you have concerns about his or her development at any point in time, seek help from rehabilitation or school professionals who are familiar with brain injury during childhood.

QUESTION:

My daughter sustained a traumatic brain injury approximately one year ago. She has been in special education for the last six months. I am concerned that she may not be getting the assistance she needs from the public school. Her grades are low and she is frustrated. From what my daughter tells me about her day at school, it sounds like the teachers are not adhering to the Individualized Education Plan (IEP). I think if the strategies in the IEP were in place (e.g., more time to complete assignments, one-to-one help) that my daughter could achieve academically. What can I do to get the school to follow the IEP, or if necessary, revise it and try some new strategies?

ANSWER:

The Individualized Education Program (IEP) is a requirement of Public Law 101-476, the Individuals with Disabilities Education Act. This special education act assures a free, appropriate public education for every student with a disability. Parents are expected to be a part of the educational team and they should assist with the development of the IEP as well as periodic re-evaluations of whether or not progress is being made when the plan is in place. Many professionals who work in the education system with children who have sustained a TBI recommend that the IEP should only be written for 6-10 weeks and that changes to the plan should occur on a regular basis during the school year. This is different than many IEP’s that are written for the entire school year. There is no standard that states that the plan must be written for the entire school year. Parents have the right to request a review of the IEP during the school year if they are concerned about appropriate use of techniques or lack of progress. At the time the IEP is reviewed, alterations to the plan can be made. Each state has a Department of Special Education that has a manual that describes Due Process for review of the child and how parents can be a meaningful participant in that process. Any school district can provide the address and phone number of the state department of special education. This manual also outlines parental rights for outside opinions and assistance should they believe they need that type of assistance. Further information about IEP planning for children with TBI can be found in: (1) Savage, R. & Wolcott, G. (1994). Educational dimensions of acquired brain injury. Austin, TX: Pro-ed; (2) Blosser, J. & DePompei. (1994). Pediatric traumatic brain injury: Proactive interventions. San Diego: Singular Press, phone: 1-800-521-8545.

When you request a review for your child, specific topics that you may want to discuss include:

What are the underlying processes that may be affecting learning? For example, what is her attention span for academic work and are there ways to: (a) Participate for shorter amounts of time, or (b) Break assignments into shorter segments?
What is the daily routine for this child? Is the routine clear to her? Is it inappropriate amounts of time?
What are the expectations of each teacher for performance in the classroom? Are they listed clearly in writing for the child? Are they reasonable and doable for the learning problems that may exist?
What specific teaching strategies are listed on the IEP that will aid this child to perform?
Can the amount of work be adjusted? For example, does the child have ot do the same number of math problems for homework as the rest of the class or can there be an adjustment to demonstrate the quality of learning rather than quantity?
Is communication expectations to the child written as well as verbal?

Be sure to agree on the length of time before another review will be completed. Every three months for the first 2-3 years after the TBI is appropriate.

QUESTION:

I have a baby that sustained a serious brain injury. I was told that some of the more subtle learning problems may not show up until my child goes to school and is required to master new tasks. What kinds of problems should I be looking for when he goes to school?

ANSWER #1:

For infants and preschool-age children with severe brain injuries, it is important to continue to provide special services, such as speech and language therapy, physical and occupational therapy, and special education. In particular, children who injure their frontal lobes may later develop behavior problems (a behavioral psychologist can help). Children with impaired communication development may have difficulty learning in school and relating to peers (a speech and language pathologist can help). Also, many younger children with brain injuries later experience problems paying attention or trying to remember (a special educator or cognitive therapist can help).

It is also important to have the child followed by a developmental pediatrician. Children need to be carefully monitored as they continue to develop and mature. The five peak maturation mileposts to monitor are:

ages 1 - 6
ages 7 - 10
ages 11 - 13
ages 14 - 17
ages 18 - 21.

Infants and preschool-age children with brain injuries are still growing and their brains are still maturing. Providing services early and continuously can help the child through these developmental milestones.

ANSWER #2:

Children injured at a young age often have problems with sustained attention and concentration, language development, and motor skills. When your child first enters school, you may notice that he seems "immature" compared to others in his class. That is, he may show problems in some of the following areas: sitting still, listening to the teacher, understanding directions, learning new ideas, finishing his work on time, or talking about what he knows. He may have more trouble than other children learning to read, write, and solve math problems. You and his teacher may feel frustrated by the fact that he seems to learn things but then cannot remember them later or apply what he has learned in a slightly different situation. Your child’s uneven performance may make you wonder if he is just not trying hard enough. He may actually be working very hard to keep up. Because of his processing problems, he may become easily frustrated, overly fatigued, and irritable or clingy. Some children who have been injured may also have trouble getting along with others or making friends at school.

If you notice any of these problems or if your child’s teacher expresses concern, it will be important to talk with the teacher about your child’s history of brain injury. Educators may wish to conduct an evaluation of your child’s strengths and concerns. They may consult with a child neuropsychologist who specializes in evaluating children with brain injuries. The goal of such an assessment should be to identify ways to support your child’s success at school.