Many children who have IgA Nephropathy are not so terribly affected that their schoolwork suffers. Others, unfortunately, are frequently sick, miss lots of school, and may find themselves falling far behind in their classes. The following are some times gleaned from personal experience in dealing with one of the latter:

1. There’s a strong temptation to take over the role of teacher when your child is sick. Don’t give into it, unless you’re already a home-schooling pro, or your child is ready and willing to learn from you. I realized, after trying unsuccessfully to make up for what my son was missing in French and other classes, that I could not be all things to him. I was already his mother and his nurse; I had to relinquish to role of teacher for the sake of his sanity and my own. Chronic illness in a child can make for too much togetherness. A sick kid, cut off from his friends and school, needs to interact with people other than his parents as much as possible. If your child qualifies for accommodation, the school will provide tutoring (see below); if not, hiring a tutor or enlisting the aid of adults or other children who enjoy sharing their knowledge is invaluable.

2. Talk to your child’s teachers, principal, and school psychologist about IgA Nephropathy and how it affects your child. After two years of make-shift arrangements, I had the principal arrange a single meeting at the beginning of each school year with all of my son’s teachers. I put literature on IgA Nephropathy into his file at school so his teachers could read it, and I explained to them how IgAN frequently made him ill, sapped his strength, and impaired his concentration. Often children with IgAN don’t look sick — that is, they’re not in a wheelchair or losing their hair to chemotherapy — so the school doesn’t appreciate how devastating the disease can be. Everyone needs to understand that your child’s illness is real — he or she is not malingering!

3. Ask your child’s teachers to be creative in devising homework assignments for those times your child is ill. When you’re dealing with a chronically-ill child, it becomes obvious that much homework is make-work. You want work assignments that will challenge your child’s brain without taxing his or her limited energy. Some teachers respond magnificently to the challenge of devising "learning assignments"; others can’t or won’t. This is one area where you, too, can be creative about supplementing what your child may or may not be getting from school. Even older children appreciate being read to when they don’t have the strength or concentration to read themselves. When my son was ill, we watched a lot of videos: we’d view a documentary on a period in history, then contrast it with a fictional movie covering similar ground. We also went through a lot of books on tape!

4. If your child is missing a substantial amount of school, ask for special accommodation. Under the Federal Education of the Handicapped Act, blind, deaf, neurologically impaired, emotionally disturbed, learning-disabled, mentally gifted, and mentally retarded children are entitled to special educational services. So, too, are those suffering "other health impairments," a classification that includes nephritis. IgA Nephropathy qualifies as a chronic nephritis.

By law, all children have the right to a free, appropriate public education; they cannot be deprived of that right by virtue of having a chronic illness. Among the types of accommodation the school might be required to offer (at no cost to you!) are a communications set-up that would enable your sick child to listen in on classes, or home-tutoring by qualified teachers. You start the process by writing your school administration to request that an Individualized Education Program (IEP) be established for your child to accommodate his or her health impairment. This should result in a conference with district officials to develop the outlines of an IEP.

Think long and hard before this conference on precisely what you want: for instance, how many days should your child miss school before qualifying for home tutoring? Should the days missed be cumulative, or must they be consecutive to qualify? It’s important to develop one system for the school to collect homework assignments (so the burden doesn’t fall on you) and another to automatically initiate the agreed accommodation (so you don’t have to reinvent the wheel with each new episode of illness).

Be prepared to submit a letter from your child’s doctor at the start of each school year; the letter should discuss your child’s illness and his or her potential need for homebound instruction. Additional letters after each episode of illness should not be required, particularly if your kid has a track record of being sick frequently. (This should also be stipulated in the IEP.) Consider having homebound instruction go into effect automatically no later than one week after your child has missed 7 days in any two-week period. Require that it continue until he or she is caught up on ALL subjects. Stipulate that home-tutoring be used only to replace instruction missed because of illness, not to administer make-up tests. Tutoring time is too precious to be squandered on test-taking.

5. Don’t be afraid to enlist the support of a lawyer or advocate for your child. Schools resist making special accommodations for kids who need help because it costs them money. To find an education advocate, call your state department of education and ask around. Organizations that cater to learning-disabled or mentally-retarded children may be able to refer you to people or organizations knowledgeable about getting educational accommodations. Your local bar association should also have a committee on children’s legal rights that can provide information and referrals.

6. Stay vigilant. Just because your child’s school agrees to something on paper doesn’t mean they’ll be scrupulous in seeing it through. There’s a lot of slippage, good intentions notwithstanding. Even after years of accommodation, my son felt that his school cared more about whether he got good grades than about whether he really learned a subject.

[Reprinted from Network News, No. 7 (April 1997)]