Monday, July 16, 2007

Not so funny

Just a head's up now. There's no humor in this entry, so stop reading now if you were hoping to laugh. Proceed, however, if you'd like to learn something new.

I was reading different blogs today and came across one blogger who wrote extensively about curse words and even included a reference to
Tourette Syndrome (TS) that was meant to be humorous. Only, I didn't find it funny at all.

TS is a neurological condition characterized by the presence of multiple tics. There are two kinds of tics associated with TS: motor (blinking, shrugging, etc.) and phonic (sounds made by moving air through the mouth, nose, or throat). TS develops during childhood, peaks between the ages of 9 and 13, and then wanes. By age 18, most people with TS don't have very many tics and it's only a minor part of their lives. For the most part, they'll be adults with a few quirky behaviors that can be annoying for the people around them. Usually, a person with TS doesn't even notice that he's ticcing.

Tics are like itches that must be scratched. The longer the itch (or tic) is ignored, the worse the person's agony. You can't tell a person with TS to stop clearing her throat or to stop doing whatever it is that is irritating you so mightily. To do so would be detrimental and cause them a lot of discomfort. Luckily, the tics wax and wane, so they do go away -- but only to be replaced by a new one.

On the rare occasion that a TV or movie character is portrayed as having TS, that person invariably curses uncontrollably and those viewing laugh because they think it's funny. It's not, actually. Coprolalia is the involuntary utterance of inappropriate or derogatory remarks. Only a small percentage -- 5-10% -- of people with TS actually have coprolalia among their symptoms. Laughing at a person who cannot control his/her behaviors is cruel. You wouldn't laugh at a person with cerebral palsy would you? No, of course not. Then why would you laugh at someone who has the coprolalia component of TS?

Wow, I seem to know an awful lot about TS. And I do seem to be a bit touchy about it. Why would that be?

Back in February, I posted an
entry in which I talked about the origins of this blog and my need to vent. One of the many major stresses in our lives last fall was when we discovered that Graceful's quirky behaviors are not due to Obsessive Compulsive Disorder (OCD, although it's still a possibility) but instead TS.

Graceful has been ticcing since she was four years old and we spent almost four years being annoyed by her noises and twitches. We had no idea that she couldn't help it and we'd fuss at her for the repetitive throat clearing or for sniffing over and over again or for picking at some part of her body until she bled. We did everything we could to understand what was going on, only we were wrong in our assumptions about what was going on. It wasn't until we stumbled across a description of TS that we had our "ah ha" moment.

Now, we are of course much more patient with Graceful's various noises and twitches. Most of her tics are innocuous and not necessarily noticeable. Well, Pete and I notice them, but that's because we need to keep track of what's going on. For example, right now she makes an odd noise in the back of her throat but that's the only thing we're noticing. A month from now, however, it will likely be different as her tics cycle in and out and change about every four weeks. Sometimes there are only one or two and sometimes (particularly when she's under stress), she might have three or four or even more going on. In general, her tics aren't present when she's physically engaged -- soccer, swimming, running around, etc. When she's at rest -- reading, writing, making art -- then the tics come back into play.

Every now and then, we are able to either stop a tic completely or redirect it, but it's rare. Graceful was sitting at the kitchen table reading one day when she suddenly cracked the edge of her book on the table. The second time she did it that afternoon, I recognized it as a new tic and suggested that she read on the sofa instead so that she couldn't do it again -- so we were able to stop that one tic for the time being. This past spring, Graceful's physical tic was to grab her face with both hands -- fingers up at her cheekbones and thumbs down at her jaw -- and squeeze really hard. Yes, it left marks and yes it was distressing for Pete and me to see. We suggested to Graceful that she try squeezing on a stress ball whenever she felt the need to grab her face and that helped her a lot, particularly at school.

Ah yes, school. So what about that, you might ask? Well, we worked closely with Graceful's teacher last year and she was kind enough to email me whenever she saw a new tic or something that she wasn't sure about. We also informed all the other adults at school who come into contact with Graceful and asked that they not penalize the girl for certain behaviors. There was a month when Graceful would suddenly "yip" loudly and we didn't want her to get into trouble for it. The school faculty and staff were terrific the entire year. And, surprisingly, none of Graceful's classmates seem to notice her tics. She has told a few of her friends, but in general we don't let TS rule our lives.

But TS is ever present in our thoughts. Graceful's tics will peak in the next few years and we are considering putting her in a small private school for grades 5-8 so that she'll be in a better environment for being able to be herself. Can you imagine what it's like for a kid with TS during the middle school years? There's nothing like tics and other quirky behaviors to set a kid apart at a time when everyone's going through puberty and generally acting all squirrelly and weird.

School starts in about five weeks, so in about three weeks we'll get the girls' teacher placements. At some point after that, I'll email Graceful's teacher to talk with her about the TS and also let her know that Graceful is partially deaf in one ear (congenital otosclerosis -- another blog entry for another time). It's likely that Graceful's teacher from last year passed this information along to this year's teacher, but I've learned that teachers are very busy right before school starts and don't always pay attention to this stuff, so it's best if I also let the teacher know what's going on.

TS affects Elegant too. Because of the family history of TS and also OCD within Pete's extended family, Elegant is ineligible for a number of the ADHD medications available. Some of them could actually bring on tics in our younger girl, which we'd of course like to avoid if possible.

As for Graceful, yes, there are meds available she could take, but her tics are not that bad, as compared to other people with TS. And, the meds can cause other problems, including depression and even suicidal thoughts, so we're not eager to "dope and hope."

So, getting back to the original point, I was less than amused when I read a derogatory comment about TS in someone else's blog. I understand this person isn't familiar with TS and therefore unaware of how her comment could be offensive. I'm certain that I too have offended people in my own blog, so we all just have to develop thicker hides and not get all het up about stuff. But I thought I'd at least share this part of our family story in the hope that someone somewhere will learn and be a bit more tolerant of others.


erin said...

That was really interesting - I had no idea TS involved more than spontaneous profanity (like in the movie "What About Bob?"). Thanks for taking the time to write about it.

Aims said...

Wow. I am in total agreement with you as to how you are dealing with TS. There was a really informative documentary last year here about it which really opened my eyes. I am sure that Graceful has the confident outgoing personality that will enable her to get along in any school, especially with loving support from her family.

powerof4 said...

Interesting to read this post as my six year old son was diagnosed with TS. We just met with his private school administrator for teacher selection and accommodations in the classroom.

I agree. The lack of understanding and insensitivity toward TS is abhorrent. So is the lack of support groups and resources available to parents who have children with TS.

I have started my own blog in honor of my son. Check it out:

Leave comments. I would value your perspective as a parent of a child with TS.

Crystal said...

Ditto to what they said. I had no idea it manifested in such ways and I'm guilty of saying things like, "My neighbors think I have Tourettes" because I curse a lot.

I will be more compassionate now that I've learned this. I wouldn't want someone making light of my daughter's struggles.

thanks for this.

Family Adventure said...

It's heartbreaking, when people do or say something innocently enough, that ends up hurting others. You are right to point it out, it is likely they did not really think it through. And by you saying something, perhaps they'll refrain from doing it next time?