It’s a few days after Halloween, so I’m probably a few days off from when I should be discussing witches, but I have to pose this question: At some point in history did some ancient Touretter upset a local witch so badly that she put a curse on all who have this particular syndrome?
Some days, it sure feels like it. It seems that it’s not enough that we have to live every day with a condition that is embarrassing and often painful, on top of everything our condition throws at us we have to deal with society’s ignorance and use of Tourette as a punchline.
I belong to a few support groups on Facebook. They are closed groups because some of the topics we talk about are embarrassing and people are more willing to talk openly if they know what they say isn’t going to be posted to their friends newsfeeds (of course, yesterday Facebook had a glitch which did that even on closed groups — thanks a lot Facebook.) We talk about everything in those groups, both the good and the bad. Often, it seems that there is a lot more bad than good.
Without being too specific, because privacy is an issue, here are some of the topics that have come up in the last week:
- Someone’s neighbor called the police because of the sounds coming from their house.
- A parent was having trouble finding a neurologist who treats Tourette in their area.
- Someone injured their back ticcing and was having difficulty getting around the house because of it.
- A child was having suicidal thoughts but thanks to a family pet found reason to want to live.
- A child was held inside during recess to finish an assignment despite the child having an IEP that specified that recess could not be taken away because they need that unstructured time to burn off extra energy.
- A parent didn’t want to medicate their child, but the child wanted to try medication.
- Several parents blamed themselves for not noticing that what their child was doing was Tourette and not just a cute “habit.”
- A school tried to tell a parent that their child didn’t qualify for a 504 or IEP because their grades weren’t failing.
- A child received an award for being “most improved” in his class.
- Someone needed an MRI but couldn’t hold still so they had to stop and reschedule for an appointment when they can be sedated first.
- A teen being mocked and physically assaulted by classmates for being different.
- Parents voiced concern over their own anxieties.
- Someone FINALLY got an appointment with a neurologist; earliest appointment available is next year.
- A teacher decided to try and “redirect” a tic they didn’t like seeing in the classroom, the child is now referring to himself as stupid because he can’t stop. (There are methods that can be used to redirect or substitute tics but these should be practiced by trained therapists only, not a teacher)
- We celebrated a few birthdays.
- A family member who doesn’t understand the waxing and waning nature of Tourette saw someone during a waning period and insisted that they were “healed by God.”
- Someone was advised by their doctor to start using a wheelchair because tics were making mobility a problem.
- Someone was kicked out of a Wal-Mart for “being too loud.”
- Parents couldn’t agree on the right way to handle their child tics.
For more about this, come back tomorrow or read my blog.