Whether or not your child has an IEP, it's important to keep all educational records and update them yearly. These records may also be helpful in regard to your child's future education and should be shared with her. Remember: special education services can be extended up to age 21. The educational record should include:
- Contact information for the school, including teacher's name, any correspondence, and all test results and report cards
- General health information, including immunizations, medications and correspondence to and from the school about treatment
- Attendance records
- Copies of written requests you have made to the school
If necessary, talk with the school about getting neuropsychological testing. Testing that focuses on IQ and academic achievement will not usually be helpful for your child. Make sure tests of processing-speed, attention, visual-motor integration, planning and organization, visual, verbal and working memory, math calculation and application, reading/decoding, and comprehension are included.
Some children treated for cancer may benefit from medications used to treat ADHD. You should discuss this with your oncologist and work with a neurologist, developmental-behavioral pediatrician or child psychiatrist to determine which medication and dosage may be appropriate. Different medications, at different dosages, may be tried before finding one that is effective.
Many children with neuro-cognitive late effects have difficulty learning and demonstrating their knowledge in a "read-write" world, but do quite well when their education focuses on a "listen-speak" approach. The following strategies have been successful:
- Acquire all reading material on tape to allow the child to listen rather than read (this can be done for textbooks in all subjects and for enjoyment reading)
- Assess the child's progress using oral rather than written exams
- Allow additional time for assignments and tests
When standardized tests are given:
- Record answers on the test form itself, not a "bubble page" or other scanning document. Children treated for cancer often have difficulty lining up their answers on the answer sheet with the correct questions on the test form.
- Request that the test be read to your child, and their answers be given orally
Technology can be very useful. Calculators greatly aid math calculations and using a calculator can help children continue to learn the application of math concepts without being stopped by the barrier of not being able to memorize multiplication tables. Likewise, voice-recognition computer software can be effectively used by teenagers. This tool allows them to dictate their work directly into the computer's word processor.
(Above information provided by Daniel Armstrong, Ph.D., professor of pediatrics/associate chair and director of the Mailman Center for Child Development.)
Back To Top
Learning Challenges Your Child May Face
As a result of diagnosis or treatment, your child may have difficulties in school. Some academic problems may appear immediately, but others may not surface for several years. Because childhood cancer is rare—and studies on survivors continue to release new findings about educational late effects—educators may not be aware of all of the educational late effects. As a result, educators may view your child from a very different perspective than you. It is important for you to inform your child’s teacher that potential learning problems may be related to cancer and its treatment.
It may be a good idea to request a 504 Plan for your child at diagnosis and continue it through high school. A 504 Plan is a legal document designed to plan a program of instructional services to assist students with special needs in a regular education setting. Keep the plan in place after your child’s treatment ends, as this makes it easier to tap into resources, if needed.
Indicators of learning problems include the inability to:
- Write or spell correctly
- Comprehend material that is read (although reading the actual words is often not a problem)
- Complete tasks in a timely manner
- Recall math facts (e.g., multiplication tables) and perform calculations correctly when solving or organizing a math problem
- Perform handwriting quickly and accurately
- Remember visual information rather than auditory
- Processing, copy or write information that is seen
- Remember visual, novel and non-meaningful items
- Sustain attention
- Process new information
- Plan and organize
Your child may also have learning problems if:
- Grades fall, particularly in math and spelling
- The teacher frequently reports that your child doesn’t pay attention
- Homework takes much longer to complete than before
- Your child complains about school and frequently battles about homework
- Your child is continually frustrated with schoolwork
Interestingly, the following learning areas seem to be unaffected by cancer treatment:
- Learning and remember information that is heard
- Understand the application of math concepts
- Verbally communicating the understanding of concepts and new material
- Recalling information accurately, if provided enough time
Remember, if you sense that your child is having trouble at school, talk to their teachers. Alert them to the possibility that the problems may be related to her illness and treatment. In some cases, learning difficulties can be alleviated with changes in the learning environment, such as relocating a child’s seat or allowing extra time on a test. In other cases, there may be no way to restore the child’s previous ability to learn. It may be helpful to seek neuropsychological evaluation to identify the possible cause of the problem. In every case, you should work with the educational team to alleviate your child’s difficulties and reduce stress as much as possible.
Additional information can be found here:
- Advocating for School Support: For the Parents of Childhood Cancer Survivor
Presenters: Thurma Deloach, PhD; Leslie Johnson, MA; Julie Tadros, RN,
Staff from the Kirkwood, MO School District
- Optimizing the Lifelong Health of Childhood Cancer Survivors: School Issues Presenter: Daniel Armstrong PhD.
From Mailman Center for Child Development, University of Miami Miller School of Medicine/li>
- Cancer Treatment May Impact School: How to Convince Your Child's Teacher
Presenter: Mindy Aylward, RN, BSN, CPON
From: Akron Children's Hospital, Oncology Outreach Educator
Back To Top
A number of federal guidelines are in place to ensure that children's special educational needs are met. The Individuals with Disabilities Education Act (IDEA) states that "children with disabilities" are entitled to "free, appropriate public education which includes special education and related services, to meet the unique needs of all disabled individuals between the ages of three and 21." Examples of related services are physical therapy, occupational therapy, speech therapy, counseling, sign-language interpretation and classroom aides. Below are listed IDEA categories of disability:
- Hearing impairment
- Mental retardation
- Multiple disabilities
- Orthopedic impairment
- Other health impairment
- Serious emotional disturbance
- Specific learning disability
- Speech or language impairment
- Traumatic brain injury
- Visual impairment, including blindness
Most children with cancer are eligible under the category "other health impairment." IDEA guidelines apply to state-funded schools only. Private schools are not mandated to meet the guidelines and may not be able to provide your child with special services. However, your child may be able to receive some services at your local public school, even if he attends private school. You can discuss the options with the public school administrators.
If you feel your child meets one of the listed criteria, ask the school principal or director of special education for the necessary paperwork. Your child's doctor will have to provide documentation. Your child will undergo a series of evaluations that will help determine whether she is eligible for services. Sometimes, evaluations do not show a deficiency until several years after treatment is completed. Reassessments are made every three years. However, studies indicate that children treated for cancer may need more frequent testing.
If the school is unwilling to test your child, ask your doctor for a referral to the hospital psychologist for appropriate testing and recommendations, then share those test results with the school. Strongly encourage the school to do as much testing as possible, as it is often not covered by health insurance. The education consultant at the hospital can assist you with this process.
Special education is defined as "specially designed instruction, at no cost to the parents, to meet the needs of a child with a disability (34 CFR, Sec. 300.17)." Local and state governments interpret and implement the federal guidelines differently. Special education includes everything from classroom instruction to special accommodations and related services. Education must be provided in the least restrictive setting, which means that your child will not necessarily be placed in a special-education classroom. Write or call your local school district to obtain a copy of its special-education policies and services. Click here for a list of special-education resources by state.
IDEA specifically empowers you to advocate for your child and work as an equal partner with the school to develop an Individualized Education Program (IEP). This will provide the framework for your child's education. In developing the IEP, you will attend each meeting and share your concerns, questions and special factors, as well as discuss ideas about your child's education.
All students who qualify for special education and related services are also protected by federal law under Section 504 of the Rehabilitation Act of 1973, which prohibits discrimination by any federally supported organization against qualified students with disabilities. Section 504 upholds a student's equal access to educational services even if they are not eligible under IDEA.
In order to qualify for Section 504, your child must have a physical or mental impairment (a cancer diagnosis is considered an "other health impairment") that substantially limits a major life activity, such as school attendance.
Under Section 504, a disabled child may receive benefits from any educational program (preschool, elementary and secondary) that receives federal funds. This allows the child to receive nonacademic services, such as special transportation, after-school care or special activities. In addition, your child will be exempt from the school's attendance policy, if one exists. Do not discontinue your child's 504 Plan just because treatment has ended.
Your state's Parent Training and Information Center serves parents of children with all disabilities to effectively advocate for their children's educational rights and services. Its mission is to ensure that all children with special needs receive an education that allows them to meet their personal goals. To find your state's information center, go to www.taalliance.org.
Additional information can be found here:
Back To Top