TOUCHED BY LYME: What about school?
When school-age children and teens fall ill with Lyme disease, there are many additional complications besides obtaining proper medical care. (That’s hard enough….) Another big problem is what to do about school. When attending regular school becomes out of the question, parents find themselves scrambling for alternatives.
Many people start out by using the home-bound instruction option offered by their local public school district. This typically involves a teacher coming to the home once or twice a week, and the student working on his or her own the rest of the time. This works for some families, apparently. For many others, it’s fraught with problems.
For instance: Let’s say the teacher is scheduled to come to your house at 10 a.m. on Wednesday. And let’s say your kid can’t get to sleep AT ALL Tuesday night—sleep problems being very common in the Lyme world—and finally falls asleep about 8 a.m. Of course you’ll cancel with the teacher and let your child sleep. It’s the right thing to do. (Even if you woke the child up, how productive would that session be?)
But school districts tend not to see it that way. They might cut you some slack once or twice. But not on a regular basis. If you buck their schedule too often, you may bring down the wrath of educational officialdom. And in some cases, even risk charges being brought against your family for truancy.
Other problems abound as well. Lyme kids often have “good” days and “yucky” days, when it comes to pain levels, mood, cognitive ability and stamina. They might manage a decent amount of school work one week, and be unable to accomplish anything at all the next two weeks. Again, this hit-and-miss approach isn’t a good fit with the bureaucratic needs of a school district.
So, eventually, many Lyme families find themselves exploring alternative schooling, with varying success. There are accredited on-line programs, where you can sign up for one class or a whole curriculum. (One I can personally recommend is BYU’s distance-learning program.) This system can work well for some families. In our case, we used a few on-line classes as a bridge to getting back into a regular academic program. But if you do a lot of classes on-line, the out-of-pocket costs can really add up.
An option I’ve recently found out about is a program called virtual pubic schools, which are offered at no charge to the student. The program supplies a computer and a teacher for the student to interact with either via email or telephone. All classes are conducted on-line, sometimes with supplemental materials, such as books or videos.
The largest of them is a program called K-12, which operates in 21 states, and eventually hopes to expand to all 50. Its California affiliate is called CAVA—California Virtual Academy.
The K-12 organization isn’t a charity. It gets its money from the state. K-12 functions like a charter school. ADA money for that student goes to the virtual school instead of to your local school district.
I’ve heard from a few parents of kids with Lyme that have used CAVA who say it has worked well for them. They say the program is flexible enough that kids can work when they are able, and slack off when they need to. They say their kids like the program, which, as you know, can be half the battle.
If you are searching for schooling options for your child, it would be worth taking a look at the K12 program.
I’d also like to open up the topic of schooling for kids with Lyme for wider discussion. If you’d like to share your thoughts with me, send an email to dleland@lymedisease.org, with "Lyme school" in the subject line. I’ll include the comments in a future column.
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