Myles' Miracle Mission

Homebound Program

If your child is missing school frequently or the doctor recommends that he avoid large groups, you will want to explore your school's "Homebound" program. Homebound tutoring refers to the special service provided either by the school system or by a private tutor to a student who must be absent from school over an extended time period. The school should accept the responsibility of setting up homebound program. Some schools have different definitions of "Homebound", so it is important to know your school's definition and criteria. It is best to request "intermittent" home tutoring. This means your child can attend school on the days he feels well, and has permission from the doctor, and will be tutored when he can not attend. You may have to educate the school counselor or person arranging the tutoring about intermittent home tutoring. However, "intermittent" homebound instruction may not be right for every child. You can explore this with staff members from your child's school and the hospital based education program. Your child will remain enrolled in the school while he is on the homebound program and is expected to ultimately return. It is important to remember that your child should attend school whenever possible. The hospital's educational coordinator can assist your child with academics whether he is inpatient or outpatient

When your child is not in school, he is missing the important role of socialization that the school plays. The ideas below may help your child stay involved at school.

• Work with the school to have your child there on special days- Valentine's Day Party, Halloween, etc
• Encourage classmates to send cards/letters/pictures.
• Keep connected through email. See if a class at school will initiate this.
• Have your child set up a website to keep others updated.
• Set up a box at school for people to stay in touch with your child.
• Encourage your child to call or write friends.
• Let friends visit or play. It is important that your child continue to maintain as much normalcy as possible.

Returning to School

During cancer treatment a child often spends the majority of his time with his parents. As a parent you want to protect your child from all of the germs and stresses of the outside world. For this reason, returning to school can cause a lot of anxiety for parents. You need to remind yourself that normal life for a school-aged child means going to school.

Returning to school can be both exciting and frightening for your child as well. He may have concerns both academically and socially. Prior to your child's return to school, it is essential to meet with the school. There may be some visible signs of your child's cancer diagnosis and treatment, while other effects of the cancer maybe invisible. Discussing these changes and needs with your child's educational team will help him reach his true potential and ease his adaptation into the school setting. Request assistance from your child's medical team if you need it. They are often willing to provide educational material to schools. Remember that most children feel strongly that they want to be treated "normal" in school and educating the school and peers will help this occur. Because childhood cancer treatment may last a couple of school years, you may have to consider presenting this information as your child starts each new school year.

Information to Share with Your Child's School

• Concerns about central line (Port-a-cath or Broviac)
• When to contact parents about fever or infectious disease outbreaks. (especially chicken pox)
• Immunizations restrictions.
• Attendance issues, including who will pick up and return schoolwork during absences.
• Does your child need special permission or a pass to go to the restroom as needed or go to the nurse's office?
• If your child is taking medicine at school, who will administer the medication?
• Discuss with the teacher issues that may prevent your child from getting homework completed. (treatment schedules, persistent fatigue)
• Can the school arrange for tutors in needed areas?
• Can your child's seat placement in the classroom take into consideration any new hearing or visual problems?
• Are there activities your child can not do or participate in?
• Does your child need special permission to wear a hat or scarf to school?
• Is the school equipped for a wheelchair, or walker? Will they allow more time between classes?

Emotional Issues

Transitioning back to school can bring about a variety of emotional issues. Below are ideas to make the transition into the classroom easier. Your child should have a role in making these decisions. Keep the lines of communication open with the teacher regarding both academic issues and changes in behavior. It will be helpful if you have a teacher or counselor at the school who oversees your child's adjustment back into school.

• Who should discuss cancer and treatment with the school? For example, does your child want to give a presentation, have you talk to the school or maybe have someone from the hospital do the discussion?
• How much information will be shared with the school staff and peers?
• When should the discussion take place?
• Who does your child want staff and peers to go to if they have questions?
• If they should occur, who will handle rumors?
• Even when everyone is aware of the facts, children can be cruel and tease. Talk to your child about the possibility that they may be teased. Encourage the school to set the tone that teasing is not acceptable.
• If siblings go to the same school, their teacher should be made aware of the child's return and any limitations or physical changes.

Educational Problems

As a result of diagnosis or treatment, your child may have difficulties in school. Some of these changes are noticeable immediately and some academic problems 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 will be important for you to provide the teacher with as much scientific and educational evidence about learning and cancer as you can. It may be a good idea to request a 504 Plan for your child at diagnosis and continue with it through high school. It is easier to tap into resources if the plan is in place.

It is helpful to discuss with the teacher the possibility that the problems may be related to his diagnosis and treatment. Treatment and the late-effects of treatment may cause your child to be unable to perform at their previous level. Because teachers may not be aware of the late-effects, it may take time and mutual learning to resolve the issues. Sometimes no amount of intervention will change this. This can be stressful for both the child and parent and may require intervention by the school counselor or other professional. When problems can be solved, you can work with the educational team to make improvements to the learning environment. Sometimes provisions such as relocating a child's seat or allowing extra time for a test will solve the problem.

• Problems with handwriting or spelling.
• Problems understanding what they read.
• Problems completing tasks on time.
• Work takes much, much longer for your child than other children who are healthy.
• Problems remembering math facts (e.g. multiplication tables), and using math calculations correctly when solving a problem or organizing math problems.
• Problems writing neatly and/or quickly.
• More difficulty remembering information that is seen compared with information this is heard.
• Difficulty processing, copying or writing information that is seen.
• Difficulty remembering things that are visual, novel, and non-meaningful.
• Attention deficits.
• Problems with short term memory.
• Difficulty planning and organizing.

IEP

This will be the framework of your child's education. You are an equal partner with the school in the development of the IEP. You will attend each meeting and share your concerns, questions, special factors and ideas about your child's education.

If you feel your child meets one of the criteria, ask the school principal or the Director of Special Education for the necessary paperwork. Your child's doctor will have to provide some documentation. An eligibility determination will be made based on evaluations. Sometimes these evaluations do not show a deficiency until several years after treatment is completed. Reassessments are made every three years. However, studies show children treated for cancer may need assessments more frequently. In addition, if you are having trouble getting the school to test your child, ask your doctor for a referral to the hospital psychologist for appropriate testing and recommendations. These test results can be shared with the school. Strongly encourage the school to do as much testing as possible. Educational testing is often not covered by health insurance. The hospital education consultant can help 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".  Special education includes everything from classroom setting, to special classroom 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. To obtain a copy of their special education policies and services, write or call your local school board.

Whether your child has an IEP or not, it is important to keep educational records which are updated yearly. The records may also be helpful with aspects of further education and should be shared with your child.

Contents of Education Record

• Contact information about the school including the teacher's name, any correspondence from the school, all test results and report cards
• General health information including immunizations, medications, and correspondence from and to the school about treatment.
• Attendance records.
• Requests you have made to the school. Put all requests you make in writing and save a copy.

After Treatment

The learning late effects of childhood cancer are detected over time, and new problems may be noticed as children become older. This does not suggest that things are getting worse; instead, it suggests that the child's brain is not developing and growing at the same pace as those of other healthy children. New abilities show up at different ages for children. Most children don't learn multiplication tables until they are about 8 years old, and most can't write complicated paragraphs until they are 11 or 12 years old. Cancer treatment interferes with the growth of the brain, so that when children treated for cancer reach the age that a particular ability becomes "normal", it doesn't occur at this time for them. This is why we sometimes refer to the learning late effects of childhood cancer as an "acquired developmental delay". As a child gets older, we can expect to see new problems that were not seen before. It is for this reason that we recommend repeated neuropsychological evaluations so that these new problems can be identified and help provided as early as possible. In order to assess your child's ongoing educational needs, he or she should have a neuropsychological test at the end of treatment and approximately every two years after.

Practical Tips and Appropriate Testing

• Talk with the school about getting the right kind of neuropsychological testing. Testing that focuses on IQ and academic achievement will not usually be helpful for your child. Make sure that tests of processing speed, attention, visual-motor integration, planning and organization, visual, verbal and working memory, tests of math calculation and applied abilities, 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 what dose is appropriate, if any. You may have to try different medications at different doses to find one that will work.
• Many children with learning late effects have primary difficulties learning and demonstrating their knowledge in a read-write world, but are able to do quite well when their education focuses on a listen-speak approach. Several things can be done to accommodate these learning needs.
• Acquire all reading material on tape so that the child can listen rather than read. This can be done for textbooks in all subjects, and for all enjoyment reading.
• Assess the child's progress using oral exams rather than written exams.
• Allow additional time.
• Allow the child to record answers on the test form itself, not a "bubble page" or other scanning document. Children treated for cancer often have difficulty lining up the correct answers with the correct questions.
• Allow the child to have the test read to him/her, and answers to be given orally.

Technology can be very useful. Calculators can be of immense help with math calculations. Using a calculator can help children to continue to learn how to apply math without being stopped by the barrier of not being able to memorize multiplication tables. Likewise, voice recognition software for the computer can be used with teenagers to allow them to dictate work directly into the word processor of the computer.

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