Cognitive Late Effects State-of-the-art treatment for childhood cancer has increasingly resulted in greater numbers of long-term survivors but not without cost. Some survivors suffer neurotoxic effects, which cause changes in their learning style as well as social behavior. These differences may be treatment related, may have been pre-existing and aggravated by treatment, or may be caused by prolonged absences from school and friends. It is important that parents and educators remain vigilant for potential learning problems to allow for quick intervention. The signs of possible learning disabilities are problems with: Handwriting. Spelling. Reading or reading comprehension, especially compound sentences. Understanding math concepts, remembering math facts, comprehending math symbols, sequencing, and working with columns and graphs; difficulty using calculators or computers. Auditory or visual language processing, which cause trouble with vocabulary, blending sounds, and syntax. Attention deficits. Some children become either inattentive or hyperactive or both. These behaviors are indicative of neurologically based deficits in attention, which can cause children to be more impulsive and distractible than their peers. Short-term memory and information retrieval. Planning and organizational skills. Social maturity and social skills. You should also suspect learning difficulties if: Your child was an A student prior to cancer, and she is working just as hard and getting Cs. Your child takes three hours to do homework that used to take one hour. Your child reads a story and then has trouble explaining the plot. Your child frequently comes home frustrated from school, saying he just doesn't understand things as well as the other kids. Your child's teacher complains that she "just doesn't pay attention" or "just needs to work harder." Your child complains that he can't hear the teacher. If any of the above situations are occurring, take action to begin the evaluation process before your child's self-esteem plummets. It is often hard to take this first step because children affected by radiation and/or chemotherapy can reason well and think clearly and may be above average academically in several areas. They may fall behind their classmates, however, on tasks that require fast processing skills, short-term memory, sequential operations, and organizational ability, especially visual. Once identified, these differences can be addressed by strategies such as utilizing resource services in memory enhancement, eliminating timed tests, improving organizational skills, and acquiring extra help in mathematics, spelling, reading, and speech. This parent describes the emotional impact of cognitive effects, which must be addressed, as well: When she entered adolescence, my daughter became very angry about her learning disabilities. She used to be gifted, and now does very well, but it is a struggle for her. We honestly explained that the choices were life with the possibility of some academic problems versus death, and we chose life. Your legal rights (United States) The cornerstone of all federal special education legislation in the United States is Public Law 94-142, the Individuals with Disabilities Education Act (IDEA). The major provisions of this legislation are the following: All children, regardless of disability, are entitled to a free and appropriate public education and necessary related services. Children will receive fair testing to determine if they need special education services. Schools are required to provide a free and appropriate public education through an individually designed instructional program for every eligible child. An amendment to 94-142, called Public Law 99-457, requires early intervention programs for infants and toddlers at risk. Children with disabilities will be educated in the least restrictive environment, usually with children who are not disabled. The decisions of the school system can be challenged by parents, with disputes being resolved by an impartial third party. Parents of children with disabilities participate in the planning and decision making for their child's special education. 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 for special education ("Notice of Parents' Rights"). 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. To get the address, ask the school principal or a reference librarian. Children off treatment may also be eligible for services and accommodations under the federal Rehabilitation Act, "Section 504," such as those described by this parent: Destiny (age eleven) has some long-term effects from her treatment for stage IV neuroblastoma nine years ago. Her treatment included high-dose chemotherapy, radiation to the head and brain, and bone marrow transplantation. Her learning ability (in particular, comprehension and short-term memory) has been affected. The special ed department at the school told us she was entitled to extra help because of her "other health-impaired" status. This is a label given to children who have undergone specialized treatments that have been proven to result in learning problems. Destiny is in a normal classroom setting, but a special education teacher comes into the room several times daily to give extra help to the kids who need it. Examples of services are: helping with problem solving (especially math), giving her extra time to do work, as well as allowing her to repeat tests that she didn't perform well on. We have found this to be a great help in Destiny's education. She is now making As and Bs as well as exhibiting a more positive attitude toward school in general. Referral for services You will need to be an advocate for your child as he goes through the several steps necessary to determine the best possible education available to him. The steps that will be taken are referral, evaluation, eligibility, developing an individual education plan (IEP), annual review, and triennial assessment. This parent tells how the process worked: My son had problems as soon as he entered kindergarten while on treatment. He couldn't hold a pencil, and he developed difficulties with math and reading. By second grade, I was asking the school for extra help, and they tested him. They did an IEP, and gave him special attention in small remedial groups. The school system also provided weekly physical therapy, which really helped him. Parents or teachers can make a referral by writing the school principal and requesting special education testing. Some school districts will automatically set up an IEP for any child who has had cranial radiation as part of his therapy, 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. Usually, a multidisciplinary team consisting of at least the teacher, school nurse, district psychologist, speech and language therapist, resource specialist, medical advocate (whoever is serving as the hospital liaison with the school), and social worker meet to administer and evaluate the testing. Areas usually included in the evaluation process are educational, medical, social, psychological, and others. Some survivors of childhood cancer require 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 notice procedures. After the evaluation, a conference is 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 know him best, and you and your spouse have the right to be there. Parents need to be aware that children of very high intelligence can, unfortunately, fall into a gap where services will not be offered. This is because they may continue to perform "adequately," according to the school district standards (e.g., achievement scores within two grade levels of the child's age). Gifted children may receive good enough grades (As, Bs, and Cs), even though their potential is that of an A+ student. These assertions may be unlawful if the child meets other eligibility requirements. This discrepancy can frustrate them significantly. In this case, parents should be strong advocates, and continue to seek special services through the school. If you decide to pay for any services out of pocket, give prior written notice to the school and seek professional help to determine if you qualify for reimbursement. Individual Education Plan (IEP) 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 as a collaboration between parents and professional educators to determine what the student will be taught, and how and when the school will teach it. Students with disabilities need to learn the same things as other students: reading, writing, mathematics, history, and other subjects in preparation for college or vocational training. The difference is that, with an IEP in place, many specialized services, such as small classes, home schooling (usually five hours per week), speech therapy, physical therapy, counseling, and instruction by special education teachers, are used. The IEP has five parts: A description of the child. Includes present level of social, behavioral, and physical functioning, academic performance, learning style, and medical history. Goals and objectives. Lists skills and behaviors that your child can be expected to master in a specific period of time. These should not be vague like "John will learn to cooperate," but rather, "John will prepare and present an oral book report with two regular education students by May 1." Each goal should answer the following questions: Who? What? How? Where? When? How often? When will the service start and end? Related services. There are many specialized services that might be mandated by the IEP which will be provided at no cost to the family. These can include hearing or speech therapy, health services, occupational therapy, parent counseling and training, physical therapy, and transportation. For these services, the IEP should list the frequency and duration, e.g., "Jane will receive physical therapy from 9 to 10 a.m. on Tuesday and Thursday from September until December, when her needs will be re-evaluated." Placement. Describes the least restrictive setting in which the above goals and objectives can be met. For example, one student would be in the regular classroom all day with an aide present, while another might leave the classroom for part of each day to receive specialized instruction in the resource room or physical therapy. The IEP should state the percent of time the child will be in the regular education program and the frequency and duration of any related services. Evaluating the IEP. At least once a year, and more frequently if requested by a parent or teacher, a meeting is held to review the progress towards meeting the short- and long-term goals and objectives of the IEP. Some states have limits on the number of IEP meetings per year. 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 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, or they can consent only to portions of the IEP with which they agree. Parents can request to have the disagreement settled by an independent mediator and hearing officer. The IEP in Canada is almost identical to those used in the US. In Canada, the IEP is updated yearly, or more frequently if needed. A formal review is required every three years. In Canada, if disputes arise between the school or the district and the parents, there is a School Division Decision Review process available to resolve them. The concept known as due process in the US is usually referred to as fundamental justice in Canada. Two parents discuss their children's experiences with IEPs and the school staff who implement them: This year (third grade) has been a nightmare. My son has an IEP that focuses on problems with short-term memory, concentration, writing, and reading comprehension. The teacher, even though she is special ed qualified, has been rigid and used lots of timed tests. She told me in one conference that she thought my son's behavior problems were because he was "spoiled." We asked her at the beginning of the year to please send a note home with my son if he has a seizure, and she has never done it. She even questions him when he tells her that he had a seizure at recess. I began communicating directly with the principal, and I finally received a written notice that he had a seizure. I learned that the IEP is only as valuable as the teacher who is applying it. •  •  •  •  •   Initially, the school was reluctant to test Gina because they thought she was too young (six years old). But she had been getting occupational therapy at the hospital for two years, and I wanted the school to take over. I brought in articles from Candlelighters Childhood Cancer Foundation, and spoke to the teacher, principal, nurse, and counselor. She had a dynamite teacher who really listened, and she helped get permission to have Gina tested. Her tests showed her to be very strong in some areas, and very weak in others. Together, we put together an IEP, which we have updated every spring. Originally, she received weekly occupational therapy and daily help from the special ed teacher. She's now in fourth grade and is doing so well that she no longer needs occupational therapy, and she only gets extra help during study hall. They even recommended her for the student council, which has been a tremendous boost for her self-confidence. Services for infants and preschoolers US 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 infant or preschooler, but for the family as well. Therefore, instead of an IEP, an Individualized Family Service Plan (IFSP) is developed. This plan includes: A description of the child's physical, cognitive, language, speech, psychosocial, and other developmental levels. Goals and objectives for family and child. The description, frequency, and delivery of services needed, such as: Speech, occupational, and physical therapy. Health and medical services. Family training and counseling. A caseworker who locates and coordinates all necessary services. Steps to support transition to other programs and services. We have had an excellent experience with the school district throughout preschool and now in kindergarten. We went to them with the first neuropsych results, which were dismal. They retested him, and suggested a special developmental preschool and occupational therapy. Both helped him enormously. He had an IEP done, and now has a full-time aide in kindergarten. He is getting the help he needs. Record keeping Other than medical record keeping, no records are more important to keep than those concerning your child's special education. Many parents recommend that you keep a yearly file that includes the name of the teacher, principal, and district psychologist, a copy of the IEP and all test results, all correspondence, a current copy of the local and state regulations, and all of your child's report cards. You should also include in the file a list of the medications taken by your child during the year. The thought of this may seem overwhelming, but try to think of it this way: appropriate schooling is what will enable your child to overcome the cancer experience and become a productive adult. Your child needs your help to secure that future. Do not throw these records out--give them to your child when she reaches eighteen. These records can be crucial for college testing and college accommodations. On accepting disabilities Many of the disabilities of survivors of childhood cancer are invisible. To help children and teens reach their true potential, changes in intellectual functioning and social skills must be diagnosed early and addressed. Students whose style of learning has changed as a result of treatment need their parents and teachers to explore the many excellent methods to enhance their ability to learn. It is also important to remember that higher cognitive functioning often remains intact, it is just getting the information in ("processing") that is impaired. Children who were gifted usually remain so; children with average abilities retain them. Their performance may be slower; they may require extra instruction in memory enhancement and organizational skills, but they can still achieve to their potential. There are thousands of survivors in their late teens and twenties who are successfully attending college, or who have graduated and are pursuing professional careers. A disabled survivor of Wilms tumor who is now an expert on disability law wrote: These children are not going to have their rights protected, or be eligible (presuming they are eligible) for various services, benefits, programs, and affirmative action unless they say they are disabled. As far as the civil rights laws are concerned, they will be considered disabled from diagnosis till death, even if they are as healthy as the average person. Furthermore, the limited civil rights protection that applies to their parents, siblings, spouses, and partners won't apply unless they say they are disabled. A childhood cancer survivor's comments suggest that it is possible to incorporate disability into one's identity without injury to self-esteem: I do not think that there is anything shameful or stigmatizing about saying you are disabled. I think the efforts some parents have gone to so they can avoid this word are similar to the old days, when black children wore their hair like white children, and other families changed their last names and stopped speaking their native tongues for fear of "not fitting in." I think if disability is correctly explained to children, they will understand and accept. When I was a child, I was told I wasn't disabled (that was for people who were deaf, retarded, or in a wheelchair), I was merely "very sick" most of the time. It is better to make the effort to teach and have the children enjoy friendships with both nondisabled and disabled children. Otherwise, you end up with adults who feel isolated from even their own siblings. This fact sheet was adapted from Childhood Cancer: A Parent's Guide to Solid Tumor Cancers, by Honna Janes-Hodder and Nancy Keene, © 2001 by Patient-Centered Guides. Also available is Childhood Leukemia: A Guide for Parents, Families, and Caregivers, Second Edition, by Nancy Keene, © 2001 by Patient-Centered Guides. For more information, call (800) 998-9938 or see www.patientcenters.com.