By Nancy Keene and Kevin Oeffinger MD
Source: Fall 2001 CCCF Newsletter
Childhood cancer and its treatment can leave survivors with unique educational needs. As discussed in the previous article (Candlelighters Quarterly, Summer 2001), treatments that sometimes affect school performance are brain radiation, intrathecal methotrexate, high-dose systemic methotrexate, and brain surgery. In addition to these treatments, learning potential can be impacted by tumor growth, numerous or lengthy hospitalizations, persistent fatigue, hearing or vision loss, fine or gross motor impairments, and social difficulties.
The survivors most at risk for brain damage are children and teens treated for leukemia, brain tumors, and tumors of the head and neck such as rhabdomyosarcoma. Very young children (less than five and particularly less than two) whose brains are growing and developing are more at risk than are older children or teens. Changes in the way children or teens think, remember, and learn are called cognitive late effects.
Types of late effects
Learning difficulties usually become evident two to five years after radiation to the brain. They can arise immediately after surgery or very high-dose radiation to the brain. Typically, problems are noted in mathematics, spatial relationships, memory, problem solving, attention span, and concentration skills. These late effects can cause changes in learning style as well as social behavior. It is important that parents and educators remain vigilant for potential learning problems to allow for quick intervention.
One very common late effect is slow processing speed. Children with this late effect respond more slowly than do their peers. They take longer to digest information and respond appropriately. Slow processing speeds can affect learning and may impact the ability to make good judgments. The amount of information the survivor has available to make decisions is lessened because the process of considering options is slow. Again, this is not a universal late effect, but can affect a percentage of survivors.
Higher doses of radiation cause slower brain processing speeds and greater drops in IQ scores. The location of the tumor also influences the type and severity of learning disabilities that may develop. For example, children with temporal lobe tumors may have problems with memory. Learning may also be affected by medications used to treat seizures, surgical complications, hydrocephalus, vision problems, and hearing problems.
Parents of children who had cranial radiation, even at doses as low as 1800 cGy, sometimes report that the child's affect (emotions shown on the face) changed. Rather than a face that reflects what he is thinking and feeling, his face appears expressionless. This can impact making and keeping friends, as facial expressions and other body language are a big part of effective communication. Other parents notice reduced curiosity and interest.
Surgery to the brain can cause a host of late effects. The body system and amount of damage depend on the part of the brain that was operated on, the amount of healthy tissue that needs to be removed, and complications after surgery. These late effects can affect survivors' education, social life, relationships, and job performance. The effect on individual children is quite variable. Some children have no late effects, some develop very subtle disabilities, while others develop life-altering problems.
Identifying late effects
Signs of possible learning disabilities are problems with:
- Reading or reading comprehension
- Understanding math concepts, remembering math facts, comprehending math symbols, sequencing, and working with columns and graphs
- Remembering and copying shapes
- Learning to ride a bike or tie shoes
- Auditory or visual language processing (trouble with vocabulary, blending sounds, and syntax)
- Attention deficits (some children become either inattentive or hyperactive or both)
- Short-term memory (trouble following multi-part instructions)
- Information retrieval
- Social maturity and social skills
- Recognizing faces and understanding facial expressions or gestures
- Understanding deceit, cunning, or manipulation
- Planning and organizational skills.
Addressing these issues with schools can be tough because these disabilities are very different from those the schools are most familiar with. It usually takes a lot of time and effort to get the best and most appropriate education for the survivor with cognitive problems. The first step is to identify whether or not your child has any cognitive late effects of treatment. Any child at risk for cognitive problems should have neuropsychological testing done as soon possible after diagnosis. This can happen after treatment starts when the child starts feeling better, or can be done after treatment ends. The first test is called a baseline. The baseline is used as a yardstick to measure future changes in brain functioning.
PhD psychologists who specialize in evaluating how children learn and think administer neuropsychological tests. These tests usually take four to six hours, and are done over two days for younger or very fatigued children. All of that time is spent with the child, and the parent(s) are interviewed separately. The psychologist gives a series of general tests appropriate for age level, then another series of more and more specific subtests based on the results of the general ones. Pediatric psychologists usually make the testing fun for children. Some parents have this testing done through the schools, while others have it done by experts at the treating institution. Neuropsychological tests are very different from tests that measure educational level.
Your legal rights
The Individuals with Disabilities Act requires that every public school must provide free and appropriate education in the least restrictive environment to all handicapped individuals between the ages of 3 and 21 years. That means providing, free of charge, special education programs, speech therapy, occupational therapy, physical therapy, psychiatric services, augmentative communication techniques and technology, and other interventions as needed to help the child learn. These laws have been extended by the Individuals with Disabilities in Education Act (IDEA). The major provisions of these laws are the following:
- All children, regardless of disability, are entitled to a free and appropriate public education and necessary related services. Schools are required to provide an individually designed instructional program for every eligible child, including early intervention programs for at-risk infants and toddlers.
- Children will receive fair testing to determine if they need special education services.
- Parents of children with disabilities participate in the planning and decision making for their child's special education.
- Children with disabilities will be educated in the least restrictive environment, usually with children who are not disabled.
- Parents can challenge the decisions of the school system, with disputes being resolved by an impartial third party.
These laws cover survivors of cancer whose medical problems affect their educational performance, under the categories known as "other health impaired" (OHI), "traumatically brain injured," or "learning disabled." Special education services are also available if the child's medical condition limits energy, alertness, or strength. Many survivors do not need special help in school, but those who do have a legal right to it. See idea.ed.gov for the full text of IDEA and related information and updates.
Children on and off treatment may also be eligible for services and accommodations under Section 504 of the federal Rehabilitation Act. This law applies when the child does not meet the eligibility requirements for specially designed instruction, but still needs accommodations to perform successfully in school. For example, special accommodations to address health needs can include a water bottle on the desk, reduced homework during periods of illness, waiving regular attendance/tardy policies and procedures, or additional time to get to class. A child off therapy with cognitive impairments that do not meet the IDEA requirements might need to have accommodations that eliminate timed tests or provide more time to finish written assignments.
Of course, each school district has different interpretations of the requirements of the law, and implementation varies, so you should contact the school superintendent, director of special education, or special education advisory committee to obtain a copy of the school system's procedures and regulations for special education. Depending on the district, this document may range from two to several hundred pages. Also write to your state Superintendent of Public Instruction to obtain a copy of the state rules governing special education.
Armed with this information, you will be prepared to be an advocate for your child as she goes through the several steps necessary to determine the best possible education available to her. The steps that will be taken are referral, evaluation, eligibility, developing an individual education plan (IEP), and annual review.
Parents or teachers can make a referral by writing the school principal to request special education testing. Some school districts automatically set up an IEP for any child who has had cranial radiation, while other school districts are extremely reluctant to even evaluate struggling children for possible learning disabilities. Therefore, it is best for the parent or physician to send a written request to the principal, stating that the child is "health impaired" due to treatment for cancer, list his problems, and request assessments and an IEP meeting.
Once the referral is made, an evaluation is necessary to find out if the school district agrees that the child needs additional help, and if so, what types of help would be most beneficial. Children with a history of chemotherapy and/or radiation to the brain usually require thorough neuropsychological testing, which is best administered by psychologists experienced in testing pediatric patients. Most large children's hospitals have such personnel, but it sometimes takes very assertive parents to get the school system to use these experts. Your written consent is required prior to your child's evaluation, and you have the right to obtain an independent evaluation if you believe that the school's evaluation is biased or flawed in any way. However, you are responsible for this cost unless the district agrees or you follow the appeal procedures.
After the evaluation, a conference is usually held to discuss the results and reach conclusions about what actions will be necessary in the future. Make sure that in all written correspondence with the school, you clearly express a wish to be present at all meetings and discussions concerning your child's special education needs. You and your spouse know him best, and you have the right to be there.
The Individual Education Plan describes the special education program and any other related services specifically designed to meet the individual needs of your child with learning differences. It is developed by parents and professional educators to determine what the student will be taught, and how and when the school will teach it.
It is in your child's best interests to make the IEP as specific as possible. Following are some examples of things that parents had included in their child's IEP:
- School provides a keyboard for children who have difficulties writing.
- A second set of books to keep at home for children who tire easily carrying books or for those with attention difficulties who forget to bring books home.
- A day planner with all homework assignment reviewed at the end of each day.
- One-on-one help in the resource room to help organize large assignments into manageable chunks.
- A locker close to the homeroom for teens with visual spatial difficulties (get lost, don't know left from right, etc).
- Social skills training for children with social difficulties.
It is best to create a positive relationship with the school so that you are able to work together to promote your child's well-being. If, for whatever reason, communication deteriorates and you feel that your child's IEP is inadequate or not being followed, there are several facts that you need to know:
- Changes to the IEP cannot be made without parental consent.
- If parents disagree about the content of the IEP, they can withdraw consent and request (in writing) a meeting to draft a new IEP.
- Parents can request to have the disagreement settled by an independent hearing officer.
Early Intervention services for preschoolers
Federal law also mandates early intervention services for disabled infants and toddlers, and in some cases, children at risk of having developmental delays. Infants, toddlers, or preschoolers with cancer may be eligible for these services in order to avoid developmental delays caused by cancer treatments. These services are administered either by the school system or the state health department. You can find out which agency to contact by asking the hospital social worker or by calling the special education director for your school district. The law requires services not only for the infants or preschoolers, but for the family as well. Therefore, instead of an IEP, an Individualized Family Service Plan (IFSP) is developed.
Services for middle and high-schoolers
Transition planning should begin in the early years of middle school, when the student's peers are beginning to gain work skills and amass credits toward high school graduation. For some survivors, extra support will be needed to make the transition from high school to adulthood go smoothly. The written transition plan is called an Individual Transition Plan (ITP).
Students planning to attend trade school, a two-year community college program, or a four-year college program need information far in advance on which high school courses will be required for entry. This is especially important for those students with disabilities who carry a lighter course load, as they may need to make up some credits in summer school or via correspondence courses. Transition programs should address the move from high school to trade school, community college, or a four-year college program. Students are eligible for publicly funded education and/or services until age 22 if needed. Tuition in some programs may be covered for some students, in full or in part. Special education services and help for students with learning disabilities are available on campus and in the dorms at many colleges.
Sources of support
There are many ways to find the help you need to address your child's cognitive changes. Following are some good starting points for getting the information and support you need.
- Childhood Cancer Survivors has chapters on brain late effects, navigating the system, and an extensive bibliography of books to read on this topic. You can get the book from your local or medical center library or order online (e.g. amazon.com or from the publisher 1-800-998-9938.
- The Source for Non-Verbal Learning Disabilities by Thompson (LinguiSystems, 1997, 1-800-PRO-IDEA) outlines specific disabilities and detailed ways to address each.
- Negotiating the Special Education Maze by Anderson and Chitwood (Woodbine House 1997) walks you through the IEP and ITP process.
- Colleges with Programs for Students with Learning Disabilities, Sixth Edition by Mangrum and Strichart (Peterson's Guides 2000)
Hospital educational liaison
Some clinics with comprehensive late effects clinics have an educational liaison. These professionals will help you get neuropsychological testing for your child and will also work with you to get appropriate educational services. Some liaisons communicate directly with the schools to help them understand and interpret the testing results. Sometimes, the liaison will accompany the family to IEP meetings as an advocate.
Many families find support in discussing issues and sharing experiences and suggestions in support groups. Check to see if your treating institution has support groups for families of long-term survivors. If not, or if you don't like face-to-face groups, you might consider joining online support group. You can join a group that is just for parents of survivors at:
Also, most school districts have parent groups for families of children with learning disabilities. By joining one of these groups, you will get a lot of information from those with more experience, as well as tremendous emotional support.
Many communities have professional advocates whom you can hire to study your child's particular situation and make suggestions for the most appropriate program. These advocates are often retired special education teachers or psychologists who specialize in educational issues. Often, they will accompany the family to IEP meetings.
School personnel, both in the individual schools and at the district level, can be very helpful in your quest for a strong and appropriate program for your child. Try to find one person in the system and forge a strong relationship. Adopt the attitude that you and the school are on the same team to help craft a plan for your child. Show appreciation when things work well. Making deposits into a "good will bank" will help if you need to advocate strongly when services fall through the cracks.
Children with special educational needs need strong advocates in their families and schools. The benefits are well worth the effort.