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 eighth grade, and I am thrilled to report that he missed school only about once every two weeks.

I fought a long fight with the school system to get him what he needed—and still what we ended up with was far from adequate. The public school system (at least in Prince George’s County) is not set up to deal with chronically ill students, and I didn’t know what I should have expected and demanded from the system. 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) Insist on setting up an IEP as soon as possible. IEPs (Individualized Educational Plans) are much more powerful than 504s. And you have a right to have one. If students' chronic condition interferes with their education, the public school system has the legal obligation to provide free special accommodations. Chronically ill students are qualified for an Individualized Educational Plan under the category of “other health impairment.”

2) Enlist an advocate to help you set up the first IEP meeting. The first IEP meeting is the most important because the basic structure of the IEP is set then. 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. I knew the staff well and had just fought alongside them for the local school to stay open, so you would think that I wouldn’t have to worry about getting what my son needed, but it was a long, drawn out struggle. After a couple of horrible meetings, I refused to go alone.

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, they will fail. Instead, the home and hospital teacher should pre-test, teach the missing content and then test the student again. The grades 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.

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.

Schools have hundreds of students, each with particular needs. Staff cannot always invest adequate time in each child. So, it’s our job as parents to be “squeaky wheels” for our kids.
 

That is hard to do during busy times at work. Last legislative session, MarylandCAN was instrumental in advocating for legislation for employers to let parents off work to go to meetings with their child's school. No matter what your work situation is, there are three habits that will help you to keep engaged even when busy:

1) At the beginning of each school year, meet with the teachers and give them information about your child’s needs. It takes time, but makes the whole year smoother.

2) Use e-mail to keep in contact with teachers and administrators.

3) Check your child’s book bag and agenda book every day. That’s where the notes from teachers and the homework will most likely be.
 

Do you have other tips for advocating for special needs kids? We’d love to hear them.