By Maya Doyle, CSW Every year, about 4,500 children and adolescents will be undergoing treatment for end-stage renal disease (ESRD).i Going back to school with kidney disease can present many challenges for kids, their parents, their teachers and their friends. School days missed due to illness, hospitalization or treatment can be difficult to make up. Developmental and neurocognitive problems caused by kidney disease can affect learning and concentration.ii Medication and diet may require special arrangements in the school setting. Some children may feel tired, sick, or be struggling with medication side effects and unable to attend classes. Although children with kidney disease may have certain obstacles, school provides opportunities to set goals, to find friends and role models and to begin to establish their identity. If your child is medically stable, every effort should be made to get him back in school. The first step is to let school staff know about your child's condition, any medications he is taking and any dietary restrictions or activity limitations he may have. School staff members may have friends or relatives who have been on dialysis and may know (or assume) some basics about kidney disease. Your job, as a parent, is to be educated about your child's disease and to teach his educators. Be prepared to fill out school medical forms, provide a letter from your child's doctor and ask your nurse or social worker for educational materials about your child's diagnosis and dialysis. Internet resources such as "Band-Aids & Blackboards" can provide information and a forum for kids and parents to write about the challenges of school. If your child is on the waiting list for a cadaveric transplant, make sure the school is aware. Consider providing school contact information to your transplant coordinator. After a successful transplant, your child may return to school with newfound energy. Several studies have suggested that children showed improvement in neurocognitive performance after a transplant.iv,v However, do not wait for a kidney transplant to help your child strive to do his best. Do not be afraid to ask for what your child needs. The school may be able to provide school bus transportation, paraprofessional assistance, appropriate physical education activities, additional time for test-taking, etc. Some schools or school systems may require an individualized education plan be completed, considered part of "special education," even if your child is doing well academically. Find out if tutoring is available, even if your child is attending school full-time. At home, the whole family will benefit if you find ways to promote learning - read to and/or with your child, have a math contest or use the Internet to research science or history together. The type of dialysis your family chooses will have an impact on school attendance as well. Peritoneal dialysis, done nightly, means your child can be finished with treatment by the time the school bus arrives. In-center hemodialysis scheduling may be early morning or late afternoon to accommodate school hours. However, the availability of dialysis shifts and the location of the unit may not always be convenient. Dialysis units are expected to promote developmental progress through use of play guided by a child life specialist and through schoolwork guided by a teachervi arranged either on site or at home in the community. You may even consider home hemodialysis. You may choose to have your child receive home instruction through the local Board of Education. However, home school can be socially isolating and older students often find they do not earn full credits, thus delaying their progress through high school. Some illnesses, and some treatments, can cause changes to your child's appearance, such as edema, hair loss or growth or short stature. Catheters and AV fistulas may be visible on your child's upper body or arms. Unfortunately, this may result in your child teased about his "difference." Help your child find appropriate ways to respond to teasing and to talk comfortably to peers about his illness. Enlist your child's teacher to help in this process. Your child might enjoy being the expert about his illness and classmates will be fascinated. Some teachers will help friends and classmates write cards and letters if your child is hospitalized or absent for an extended time. In addition to school time, social time with peers is vital. Children with kidney disease may find themselves surrounded by adult caregivers, so they need to be given opportunities to play and hang out with other kids. Even a child receiving home instruction can have friends over after school. The biggest factors in your child's school success are the hardest to measure - personality and motivation. Has your child been dealing with a medical problem since infancy, or has he started dialysis at age eight, twelve or fifteen? What kind of student was he prior to the illness? Some children find schoolwork a great way to stay busy even while receiving dialysis treatments or when hospitalized. Some hospitals have public school teachers on site in the pediatric areas. Some children may use their medical problems as a handy way to get out of unwanted homework. Combine your child's personal style with realistic expectations. Not every child will be an "A" student, or complete high school or college in four years, but many will. Do not be afraid to ask for part-time programs or shortened school days. Your state's vocational rehabilitation programs can provide funding and programs to help your young-adult with disabilities and medical problems to complete school, obtain GED's, attend college or vocational training. Local and national organizationsvii also offer scholarships for children affected by kidney disease or other medical problems. References:
Ms. Doyle is the pediatric renal social worker at the Children's Hospital at Montefiore. For more information about topics related to children with kidney disease, visit her Web site at http://www.mayacsw.com/links.html. This article originally appeared in the July 2003 issue of aakpRENALIFE, Vol. 19, No. 1. |