Wednesday, December 3, 2014

Lessons in Learning.....

One of the many, many challenges of raising a chronically ill child is the colossal task of getting that child educated.  There are several phases to this challenge.

First, your child must be ill enough to actually qualify for assistance.  On the face of it, this seems just silly, but there has to be a standard of some sort, right?  And how hard can it be?  In some cases it's perfectly simple.  Your kid has a medical catastrophe like cancer, has surgery, chemo and all of that.  There's a defined 'start' and certain (no doubt completely irrelevant) societal expectations about timelines and so on.  OBVIOUSLY he needs home teaching.  In other cases, your kid gets a belly ache.  It gets better, it comes back, you see a specialist and then another and finally two years later you find out it's Crohn's disease and your kid has missed two days out of every five and is flunking everything and NOW what? 

The next phase is making sure your kid is well enough to handle being taught.  With an intermittent illness this is a horrible, horrible daily challenge.

Once you've identified that your kid needs and qualifies for help, you have to figure out how to make this happen.  You'd think there would be someone at the school who would be in charge of this.  So far as I can tell, waiting for help to come from the school district is about as fruitful as waiting for your letter to arrive from Hogwarts.  It's not coming.  Get over it and move on.

So, in the midst of holding down your job, caring for your family and managing your chronically ill child's medical needs, you need to be on the phone to the school to get the home teaching set up.  Oh, and by the way, those teachers seem to be disappointed if you don't know where the textbooks are, what the current homework is, and how to log onto the teacher's website.  In other words, you are supposed to prepare everything they need to do THEIR job, while you are doing YOUR job. 

Babygirl was approved for full-time home teaching a week before the Thanksgiving holidays.  We will be starting tomorrow.  She is supposed to get two hours of daily tutoring, but is scheduled for only four days.  And why, I say WHY, are they tutoring gym class?  Since they aren't tutoring her non-core classes and she needs the credit from her electives, what happens with those?  Ugh.  Back on the phone I go.

As far as the headaches go?  Babygirl did very well for a week after she came home from the hospital.  She had her first headache on Sunday, took her new rescue medications and did fairly well with them.  She went to school on Monday (which of course surprised everyone since she's supposed to be at home), came home to home teaching for two hours (her teacher had never seen her headache-free and was astonished at the difference), did two more hours of homework and went to bed.  Yesterday she was laid out with a headache but could have managed home teaching if they had TOLD us even on Monday that they had a schedule set up. 

So. Hopefully going forward we are set.  Unless she is well enough to start going back to school.  Then we are screwed because she's miles behind and they likely won't maintain the extra teaching if she's attending regularly.  Yeah, phase four - recovery.


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