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
- 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
- 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
- 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,
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
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
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
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
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
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.
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.