Pediatric Hematology, Oncology and Bone Marrow Transplant
School Re-integration

Pediatric Hematology, Oncology and Bone Marrow Transplant

School Re-integration

Frequent hospitalizations can mean kids are away from school for long periods of time. Parents can help make the transitions easier.Chronic illness affects approximately 20 percent of children in the school-age population. Frequent hospitalizations or illnesses can mean kids are away from the classroom setting for long periods of time. When it’s time to return, it can be challenging for the child and family, school personnel and the healthcare team.
 
Within this page, you can find more information about:
Why School Re-Integration is Important
 
School is the “work” of children, providing them with a sense of well-being, normalcy and independence. They have the opportunity to learn and strive for success in academic, vocational and extracurricular (sports, hobbies) activities. They develop socialization skills interacting with peers. In short, school is important for all children!
 
During a recent Open Forum Educational Night, the focus was on School Re-Entry and Back to School. A panel of presenters shared valuable information on integration of patients back into school during and after treatment including information on School Re-Integration Checklist, School Visits, Special Accommodations and additional resources available.
 
Families, teachers and a healthcare team can help kids manage the challenges they faces when a health condition impacts their ability to participate actively in school.
 

Returning to School

According to UW Health psychologist Emily Schweigert, returning to school promotes a sense of normalcy and reassurance to children. It emphasizes a healthy aspect in children’s lives and instills hope and enables planning for the future. Returning to school reduces social isolation which has a direct relation to adaptation difficulties, and makes it easier to continue attending.
 
Just as there are a number of factors that can influence a child’s ability to learn, there are issues that can affect his or her return to school. For any child – from elementary to teen – returning after an extended absence or managing the side effects from a condition can be challenging. And it can be challenging for parents, too.
 
Among the issues parents can wrestle with are:
  • Feelings of guilt
  • Uncertainty about the future
  • Feel ill-equipped to enforce going to school
  • Beliefs about vulnerability of child
  • Reluctance to share medical information with school
  • Overprotection
  • Being overly lenient or overly harsh in expectations
  • Accommodations in helping child to keep up with peers
  • Lack of knowledge for what is reasonable for the child
  • Dealing with physical symptoms
  • Myths and misconceptions about illness
  • Peer reactions to how student receives differential treatment
  • Anxiety related to missing information
  • A child's inability to participate in all activities
  • Changes in child's physical appearance, cognitive abilities
  • Fear child will experience rejection, inability to keep up with peers
  • Child will experience additional learning, emotional, or behavioral issues
  • Child will create self-fulfilling prophecy regarding peer perceptions
 
School Phobia
 
School phobia occurs in 1 percent of general population, and 10 percent of children with cancer. It includes refusal to go to school at all, or consistently leaving school early; which is different from truancy. The severity and frequency of school phobia varies and includes the fear of separation, somatic complaints – or physical problems or pain that don’t have a medical explanation, fear of social rejection and teasing. It is important to differentiate between “psychosomatic” (physical symptoms that are based on mental or emotional causes) and true physical symptoms, and involve the providers caring for your child.
 
Re-Integration Checklist
 
Nurse practitioner Sharon Frierdich shares that communication is key to helping kids re-integrate into the school setting. There will be various steps and changes that a child faces, but continued communication efforts can help smooth the way. To get started, Frierdich recommends identifying the key individuals who can advocate for the child in each area:
  • Diagnosis
  • Change in child’s condition
  • Attending a new grade, school etc.
  • Change in family dynamics, i.e. divorce
  • Significant change in child’s school performance
Another step is to create a School Re-Integration Checklist that will be shared with personnel at the child’s school.

School Re-integration Checklist

  • Obtain consent for release of information from parent/guardian to share information with school personnel
  • Discuss the best method for communication between family, school, medical team and hospital teachers, classmates and their families:
    •  Exchange email/phone/fax numbers to share information
    • School conference calls
    • Letters to classmates’ parents
    • Classroom visit by medical team
  • Review specific disease and understanding of diagnosis (i.e.: cancer, sickle cell anemia, hemophilia, etc.) and the treatment plan. Use resources from the child’s health care provider to give current, factual information to school personnel.
  • Review possible acute side effects or complication of disease and treatment, such as adverse symptoms, physical limitations, changes in appearance etc.
  • Review actual and potential effects on learning ability and behavior due to disease or treatment.
  • Review special precautions; such as infection control precautions: (handwashing, contagious diseases, immunizations).
  • State special physical appliances or equipment (wheel chair, crutches) requiring school/classroom accommodations (ie: elevator use, ramp, close parking etc.)
  • State special devices (central venous catheter, hearing aid, G-tube etc.) and provide care instructions.
  • Describe special care needs, such as: extra fluids, snacks, flexible rest room breaks, place to rest, extra set of books for home, gym modifications, close locker, special seating in classroom, peer buddy to help, take test separate with extended time, open book or oral tests, assigned moderate workload with limited homework (quality not quantity) etc.
  • Obtain special permission for child to wear hat/scarf/ wig in school, carry a water bottle, juice, snacks, etc. • Provide orders for medications to be administered in the school, as well as a complete listing of all medications the child/adolescent is receiving.
  • Provide orders and instructions for any special procedures required during the school day (i.e.: A G-tube feed, colostomy change, urine catheterization etc.)
  • Provide orders for special therapies required, such as occupational, physical, speech, adaptive PE etc. • Share results of any physical or neuropsychological testing (done over time) by medical team with school personnel.
  • Discuss child/adolescent’s, siblings’ and family’s understanding of disease and treatment and recommendations to school to assist in understanding and coping.
  • Discuss plans for acute illness or emergencies while child is attending school.
  • Obtain special assistive personnel in the school if required.
  • Share expected and unexpected plans for absences from school.
  • Set up a flexible school or home-based tutorial program if required.

School Visit

According to Child Life specialist Amanda Vermuelun, school visits by a child’s medical team can be arranged with the child’s classroom, entire grade or even the whole school. The visits can help dispel misunderstandings or rumors, and educate kids on the chronic disease and what it’s like to live with on.

A typical school visit consists of:

  • A Nurse Practitioner, Nurse, Child Life Specialist from American Family Children’s Hospital Pediatric Specialties Clinic
  • Patient/Family presence welcome
  • Short presentation to the patient’s classroom, entire grade, or whole school
  • Sessions can run from 30 minutes- 1 hour session
  • The recommended travel radius for these visits is limited to about 1 hour away
  • Presentation may include:
    • Interactive activities – geared toward age level
    • Handouts for parents and staff
    • Question and Answer time
  • Additional Resources

School Accommodation

Another important element in school re-integration is accommodation, which includes educational plans and options. Karen Carpenter, a UW Health pediatric rehabilitation specialist, explains that there are different educational plans and options depending on a particular child’s needs.

504 Plan vs. IEP (Individualized Educational Plan)

Both 504 plans and IEP plans are legal documents and provide accommodations to students to “level the playing field.” Both plans formalize and outline accommodations and support that help students to access education. Both plans are also developed and agreed upon by parents and have a team of relevant school staff to help determine necessary support.

504 Plan

A student can function in regular school environment with some accommodations. A 504 Plan eliminates barriers to accessing public school programs and extracurricular activities for which they’d be eligible if they did not have diagnosis and/or if a student’s diagnosis is negatively impacting them in some way.

Who is Eligible?

To be protected under 504 in public elementary and secondary schools, a student must be determined to:

  • Have a physical or mental impairment that substantially limits one or more major life activities.
  • Have a record of such impairment

Examples of Accommodations

  • Medication monitoring
  • Assistance getting to classes
  • Shortened school day
  • Late passes
  • Extended test taking time
  • More frequent scheduled breaks
  • Flexible bathroom privileges
  • Field trip accommodations
  • Permission to use mechanical aids (cell phones)

Resources

Hospital School

American Family Children’s Hospital offers Madison’s only Board of Education-approved Hospital School to help patients from kindergarten through high school keep up with their school work. The Hospital School is administered and maintained by the Madison Metropolitan School District. The Hospital School is open Monday through Friday and follows the Madison Metropolitan School District calendar. If a child needs to be admitted to the American Family Children’s Hospital, attendance in the Hospital School is encouraged for all patients in kindergarten through 12th grade. Bedside teaching is available, but limited to students who are unable to leave their rooms due to medical restrictions.

To help students re-enter school with as little makeup work as possible, patients should bring their books and assignments with them to the hospital. Depending on the particular child’s situation, hospital teachers may establish and maintain contact with the child’s local school. The Hospital school teachers will help students complete as much work as possible and provide additional academic and enrichment activities as needed.

There are two Hospital Schools located within the Children’s Hospital. One is on the 4th floor, and is equipped with special air filtration to minimize the risk of infection to patients with cancer. A gift from Cindy Crawford and Rande Gerber, this room also serves as a lounge for teen patients during evenings and weekends. The second Hospital School is located on the 5th floor for all other school-age patients. School re-entry services are available to assist children with a successful transition back into their community and school. The school re-entry program can also assist parents, patients, siblings and school personnel with information and resources to help facilitate a smooth and positive change back to school following and illness.

Please ask a member of your health care team if you are interested in receiving more information about our school re-entry program.