Let me start by saying I tip my hat to all the parents out
there who have children with chronic illnesses, disabilities and special needs.
It’s exhausting, and you guys are rockstars!
If you’re new to the blog (and let’s be honest, I update so
infrequently it’s a miracle anyone is here at all!) let me catch you up.
About two years ago, Princess C was diagnosed with
dysautonomia and borderline
POTS (Postural Orthostatic Tachycardia Syndrome).
For those of you not familiar with the medical jargon, it means the part of her
nervous system that controls her body’s automatic functions, like her heart
rate, the ability of her veins to constrict, how her GI system processes food,
and her breathing, doesn’t quite work right. She’s considered borderline POTS
because she has all the symptoms, but they aren’t quite severe enough to meet
diagnostic criteria.
It took us about a year to really get her symptoms under
control, during which we homeschooled, and physically she was doing well. So well, in fact, that we decided
to send her back to public school.
Since then, it’s basically been a nightmare. Her symptoms
have been relentless, and I think she’s missed almost as much school as she’s
gone to. Although her last report card said she only missed six days of school.
I think someone fudged the paperwork somewhere :P
We have an appointment with her specialist next week to see
if we can get some accommodations for school. Some days, she’s just too down to
go to school. Fainting, vomiting, that sort of thing. But then she has those
in-between days-what we’ve dubbed her “dizzy days”-where she’s lightheaded and
unsteady on her feet, but fully capable of sitting in a chair and following
along in class. Which I know because we’re still doing her at-home Spanish classes
through the
Spanish Homeschool Academy, and I’ve only had to cancel a few of
them.
Until we get those accommodations, however, we’re still
playing the absenteeism game. Which means long stretches of days where she
needs someone to make sure she gets liquids and foods and safely to and from
the bathroom, while we’re both agonizing over the amount of school she’s missed
and wondering if this is going to be the day we get the call from CPS.
I don’t think it will happen-she’s got a GREAT principal
this year (she’s in Jr High now) who has worked closely with her physicians to
get her back in school. She was actually Mr. A’s third grade teacher, and we
LOVED her. But the year she was sick and in and out of the hospital without a
diagnosis, she missed so much class it was “mentioned” more than once. Right
along with holding her back, despite her grades being high enough that she was
still on the honor roll.
We were all stressed out and on edge until one of the nurse
practitioners at her pediatrician’s office said enough was enough, pulled her
out and got her a tutor. When she did go back, it was half days only for the
rest of the year.
Know who told us a tutor was an option? Her doctor’s office.
Know who told us half days was an option? Her doctor’s office. Know who didn’t
tell us diddly, and made it sound like we were going to get a visit from CPS,
and told us that having a tutor for an extended length of time wasn’t an option
and if that was the case, we needed to homeschool?
The elementary school.
To be fair, homeschooling for a year did turn out to be an excellent
option while we got a treatment plan in place. She was able to take days off as
needed, and work at her own pace around doctor’s visits and PT. We all
appreciated the huge breath of relief it gave us not to be agonizing over
whether or not she was going to make it to school that day. It would have been
nice, however, had we not been made to feel like that was our ONLY option.
Oh! You’re probably sitting there wondering why we
re-enrolled her in the first place in homeschool was such a good choice. The
problem was, Princess C is a social creature. She loves being active, and
really needs to be around people and get involved in extracurricular activities.
With her dad working full time, and me working two jobs and going to nursing
school, she wasn’t getting that. Once she started feeling better, it wasn’t
doing great things for her coping skills.
She’s been MUCH happier since going back to public school.
They set up her schedule so her best friend is in almost all her classes (not
sure if that was a great idea or an awful one, but the girls are happy with
it!). She was chosen for select chorus, and has a part in the school play. It’s
exactly the sort of school experience she needed.
After having her home sick for the better part of the last
two weeks, however, we’re all exhausted. Thank goodness it’s the weekend. I
have to take G-money for a placement test for the STEM program tomorrow
morning, but after that we have the rest of the weekend to rest and recharge.
POTS stinks.