On February 27, 2009, my fifth-grade son stayed home from school with what we thought was the flu. But he didn’t get better. He was dizzy and exhausted. He threw up when we took him in the car. He had to lie down in elevators. We took him to doctors and labs 23 times before we had a diagnosis and a plan for how to help him. Finally, he was diagnosed with POTS, Postural Orthostatic Tachycardia Syndrome. Because of POTS his blood vessels don’t constrict properly when he stands and sits, so his heart has to work harder to pump his blood to his brain. He was out of school for the last half of fifth grade, all of sixth grade and in and out during seventh grade. He just finished ninth grade, and I am thrilled to report that he missed school only about once every two weeks.
I worked with the school system to get him what he needed, but still it was a long, hard time. For all the parents who are, like me, trying to get their chronically ill students an education, here are some things that I learned:
1) Set up an IEP as soon as possible. IEPs (Individualized Educational Plans) are much more powerful than 504s. And you can get one one. If students' chronic conditions interfere with their education, the public school system has the legal obligation to provide free and appropriate accommodations. Chronically ill students are qualified for an Individualized Educational Plan under the category of “other health impairment.”
2) Enlist an advocate/friend to help you prepare for the first IEP meeting. It is the most important because it sets the basic structure of the IEP. Family Voices works with families of children with special health needs and helps them set up IEPs.
3) Take someone with you to meet with school staff. Schools have their own agendas, and no matter how much teachers and school personnel want to help students, they cannot be your child's advocate. In a room with up to eight people representing the school, you will want to have at least one more person to help you represent your child. And make sure that the person/people you chose are both non-adversarial and knowledgeable about the IEP process.
4) Set up reasonable expectations for classwork and homework. A sick child cannot do as much work as a healthy child. Students who miss school a lot, miss content and assignments. If they are graded by the school for content they have not heard, they will fail. Instead, the home and hospital teacher should pre-test, teach the missing content and then test the student again. The grades of students who are in and out of school should come from the home and hospital teacher.
5) Schedule the special education resource room into the school day. The resource teacher can help keep track of schoolwork, provide time to do homework and help integrate the recuperating child back into school. This coordination is vital.
6) Finally, keep your child going to school and engaged with peers as much as possible. If you don’t, social and school anxiety will be just as serious a problem for your child as the chronic illness is.