Monday, March 06, 2006

Tic Enlightenment

I found the following explaination of ticcing on a TS message board. It was written by an adult with TS.
I've read a lot of technical information on the neurological cause of tics, but this person gave me much appreciated insight on how it actually feels:

"one thing i thought of is that i think it helps to think of having TS sort of like having a certain amount of tic energy in you that has to go somewhere, like an engine that has to idle. where the energy goes almost doesn't even matter, it just has to go somewhere, and it goes into tics. that's sort of a weird way to say it i guess because in me it really is more like my mind has to feel something, something has to happen, so i let the tic's happen and i feel ok. anyway ... sometimes it (tic energy let's call it) goes into obvious tics that someone can see, eye blinking, or touching your forehead, or scratching the most subtle itch on your body, or sometimes it's a thought that happens inside your head like a song that repeats over and over, or some sort of noise you need to make and/or hear, or a thought you have over and over, etc. but it's kind of like something has to happen, there's no stopping it for long, and trying to resist is an exercise in futility and just causes you a lot of anxiety. sometimes i've found i can be successful at not tic'ing in a way that anyone would notice for short periods of time but eventually the dam breaks and the waters rush in, and i have to go somewhere and just tic a while and relax a little bit."

On the homefront, TS and OCD issues are getting a bit blurred. When Z sat down to dinner last night, he quickly looked over both shoulders several times. When I asked him if this was a new tic, he said- "No. OCD. I have to look over my shoulder to make sure that nobody is behind me." Oh goody! Now his OCD behaviors are looking like tics!

We must differentiate between the two, because we're working with his psychologist to stop OCD behaviors. Tics we ignore. When we identify an OCD behavior, we try to nip it in the bud by talking through it. By not following through with his compulsion, Z learns that nothing bad will happen. If nothing bad happens enough times, the obsession goes away (hopefully).

Z couldn't sleep Saturday night because his huffing tic wouldn't let him relax enough to sleep. This frustrated him, which made the tic worse, as stress always does. Yesterday I printed out some breathing/relaxation techniques for him. Hopefully this will help.

Z's huffing tic, combined with his hand twitching/fluttering tic, makes it very difficult for him to study right now. He keeps setting his materials down so he can tic. Tomorrow we'll have him prop his book up on the kitchen table, so he can tic and read at the same time. We're hoping this will help.

Z wants his tics to change SOON, but we've all learned to be careful what we wish for.


At 3/06/2006 7:35 PM, Blogger Bridget Jones said...

Poor baby, I hope it all works out for him. One of the people who just left here was OCD, a woman in her early 40s. She had a thing about eating processed food only and about washing her hands. Her skin was raw and scaly from all the cleaners she used on it. Her office was a filthy mess. The guys threatened to send her phone to CSI (full of greasy goo all over).

Anything you could do to save Z from that is worth it!

At 3/06/2006 9:13 PM, Blogger tshsmom said...

Bridg, Z is one of the messy, packrat OCDers too. He isn't full-blown, and we're trying to prevent that.

At 3/07/2006 1:17 AM, Blogger Scrubs & Shines said...

I'm thinking checking over ones shoulder could be normal and valid at least to me its seems normal, D and A both have quirks that had made me wonder from time to time. but remembering my own checking under the bed and looking in closets cancels any worries for D and A. I'm thinking too Z is a wonderful sensitive kiddo who'll do well in life

At 3/07/2006 7:25 AM, Blogger Vancouver Voyeur said...

I'm amazed at the amount of work that you put in to caring for and raising your child. I'm exhausted with my own kids who don't have many problems to speak of and just wonder where you find the energy. *sigh*

At 3/07/2006 10:49 AM, Blogger greatwhitebear said...

tmom said:"Z is one of the messy, packrat OCDers too."

is it possible I could be OCD and not know it?

At 3/07/2006 1:05 PM, Blogger Candace said...

I wonder if yogic breathing would help when he needs to huff. It's kinda like Darth Vader breathing - closing the throat a little so the air makes a whispery sound going in and out. If it sufficed instead of huffing, it should be relaxing enough to let him sleep. Poor kid. It must be overwhelmingly frustrating.

The adult's POV was fascinating!

At 3/07/2006 2:26 PM, Blogger European said...

It sounds like you're doing pretty well dealing with/trying to prevent those OCD behaviors. I'm glad (for Z's sake and for yours) that you are so creative and positive. Yay for you!!!

At 3/07/2006 2:33 PM, Blogger tshsmom said...

OMG, Doug; I'm honored! hehe
I could understand Z checking behind him when he's in public, but he does it at home.
We're hoping that Z will make it in life. Family encouragement helps. You know that he adores you, don't you?

VV, it's really hard sometimes! I spend a LOT of time researching Z's conditions and possible solutions to his problems. We have NOBODY in our area that has dealt with TS before.

GWB, there's a lot more to OCD than I realized. I'm discovering behaviors in myself that might explain, genetically, where he got some of this. I was previously blaming L's genes exclusively.

Thanks Candace; we'll try your breathing technique too. I wish there was someone around here that conducted yoga classes. I know they'd do Z a world of good.
That POV really helped me to understand what Z is going through!

At 3/07/2006 5:13 PM, Blogger tshsmom said...

Euro, we've come up with some pretty bizarre solutions to some of Z's problems. Whatever works, right?
We're not ALWAYS positive, but we TRY to keep Z laughing about his problems. So far we've been lucky that Z is willing to discuss his OCD feelings. It would be difficult to figure out his behaviors without his input.

At 3/07/2006 5:43 PM, Blogger Davey said...

I think over the next few years Z will find that "tics" will wax and wayne. And will sometimes change or cycle rapidly from week to week or stay the same for a month or more. One of the most effective ways I have found to help people understand what it is like to supress "tics" is to have them read a paragraph without blinking. Try it start at the top of the comments page and read as far as you can without blinking. People soon relize that the more they think about not doing it the more stressed they get and end up doing it more frequently than they would have normaly. Another possability for the shoulder checking could be syptoms of symetrical Tourettes. Anything that happens on one side must happen on the other. Checking for people in a known safe inviroment is not an obsessive behaviour I have heard of before (but that means nothing). Anyway my dear keep up the good fight and know all the people here love and support you. Ans thats my 2 cents. By the way it's almost worth 2 cents American these days!!!!

At 3/07/2006 6:07 PM, Blogger Vancouver Voyeur said...

I didn't remember until just this moment, things I did as a child which were OCD-like. I would repeat phrases as they were said to me an even number of times. When going up or down stairs, I would have to take an even number of steps and if there were an odd number of steps I would step back down and up the steps until I finished at the top on an even number, same for locking/unlocking doors, brushing my teeth, and checking to make sure I did stuff. I also used to do something "spastic" with my hands and fingers. My family used to get on me constantly about it and I did it only when I got really excited about something. I used to do the spastic finger twiddling while gritting my teeth and focus on the thing that I was excited about. I think I stopped this behavior between age 7-10. The need for "even" things stopped first, then the spastic fingers thing stopped. The other odd thing I started doing at the time was to eat mayonaise sandwiches, tons of mayo on white bread, that's all I wanted to eat. I don't know why I was doing these things. I remember my mother saying, if she's eating that much of it, her body must need something in it. Years later I read something about something in certain oils being necessary for nueron functioning. Don't know if this has any connection to what I wanted to eat and my odd behaviors disappearing, but you never know. Anyway, whatever works for you and your child, when you find something that helps, go with it.

At 3/07/2006 6:11 PM, Blogger tshsmom said...

You're right Davey. We've seen a LOT of different tics over the last 5 years. Even a month or two that have been tic-free. Statistically Z is in his peak TS period, which coincides with puberty. Lovely!
I like your exercise in suppressing tics. Very effective!
I once found a website that had an exercise showing how difficult it is for TS kids to read when they have tics involving their heads and eyes. It helped me to understand why it takes Z so long to do his schoolwork.
Your advice is always invaluable, Davey!
Love you too!

At 3/07/2006 6:23 PM, Blogger tshsmom said...

VV, I did the same kinds of things at that age. I felt that I HAD to do them or something bad would happen to my family. I managed to talk myself out of these behaviors because it just felt too weird.

I read that article on essential oils too. I was already taking flaxseed oil for perimenopause, so I just added it to my guys' diet too. It can't hurt. Our sil is taking fish oil for his bipolar and it seems to be helping.

At 3/07/2006 7:30 PM, Blogger Squirl said...

Z is so lucky that his parents love him and care so much for him. This is not an easy journey but I have nothing but admiration for the way you guys are handling it. Z will be so much better off for all this. It's great that he is willing to talk about what's going on with him. I wish all parents were as involved with their children as you are.

At 3/07/2006 8:32 PM, Blogger Bridget Jones said...

GWB, you're a's hard to separate the two...heh heh heh

just kidding.....

At 3/07/2006 8:54 PM, Blogger tshsmom said...

Thanks Squirl. That's just it, don't have kids if you don't want to put in the TIME! I've met way too many parents that have NO CLUE how much time and patience that sweet little bundle of joy requires.

GOOD ONE, Bridg!!

At 3/08/2006 9:36 AM, Blogger Sadie Lou said...

This might sound incredibly ignorant but has Z ever had those verbal tics?
I think I mentioned watching that Oprah show about OCD and Tourette's and this one kid would shout, "METAL" like every five minutes.
Some kids shouted curse words.
His parents were afraid to take him out in public.
It made me sad.
Poor kids. I mention this to you now because Z's tics could be worse?

At 3/08/2006 6:14 PM, Blogger tshsmom said...

Sadie, what you're describing is copralalia. Only 5-10% of TSers have tics like this. Thank God Z isn't one of them! The only vocal tics he's had have been noises, like grunting or snorting.
There was a guy with copralalia on Dr Phil, who would shout racial slurs and he wasn't anywhere near a racist. The poor man is a hermit because he doesn't want to go out in public and constantly apologize for his tics!

At 3/08/2006 6:47 PM, Blogger Notta Wallflower said...

You probably have already thought of this, but does Z have something repetitive that he could do with his hands instead of twitching? Some of my sensory needs kiddos benefit from squeezing a stressball. Also, they can't work for long periods without having a sensory break. Like I said, you guys probably already do this, but it's the first thing that popped into my mind.

How lucky to run into an article explaining tics. I have a hard time grasping things sometimes and how certain tendencies affect people. Sometimes it just takes one different explanation for me to say "ohhh, I get it now". :-)

At 3/08/2006 7:34 PM, Blogger tshsmom said...

Thanks Notta! You're right, I have heard of this. I TRY to get Z to squeeze a tennis ball while studying, and I TRY to get him to study for 15-30 min, then take a quick exercise or Brain Gym break. HOWEVER, being a teenaged know-it-all, he thinks my ideas are "lame". :(
Maybe if he hears it from you, a professional, he'll believe it. Maybe ganging up on Z will work? Please keep shooting those ideas at me!

I got a real "light bulb" moment from that POV too!

At 3/08/2006 7:42 PM, Blogger SME said...

It seems like SOME of the OCD things, like checking behind him, are probably not going to be too distracting (propping up his books so he doesn't have to hold them is a good idea!). Keep focusing mainly on the ones that are going to interfere with his life, like food phobias!

You SHOULD be honored - Richard doesn't even read all my posts, but he read every single one of yours the other day! :P

At 3/08/2006 8:04 PM, Blogger tshsmom said...

SME, we can't let OCD behaviors "ride" because they CAN result in full-blown OCD.

I AM honored! However, I HAVE been bugging him about this on his blog. hehe
Nothing worse than a nagging mother-in-law. ;)
Are your in-laws on their way to BC now?

At 3/08/2006 9:09 PM, Blogger greatwhitebear said...

yeah, here all this time I thought being a messy packrat was just a guy thing!

At 3/08/2006 9:20 PM, Blogger Notta Wallflower said...

TSHS - No problem. Not sure if Z hearing it from a professional will help. :-P I work with teens who roll their eyes at me even though I'm NOT their mother. :-/ One nice thing though, is since you home school, you are free to try things for Z without worrying that they will make him "stand out" with his peers. That's a huge barrier in public schools, especially for kids Z's age.

At 3/08/2006 9:40 PM, Blogger tshsmom said...

Notta, standing out was a HUGE problem for Z in public school. He still inhibits tics in public. You know Z trusts you when he'll tic in front of you. ;)
LOL! Z has had several different eye-rolling tics. We never know if it's TS or teen stuff.

Tell us more GWB and we'll see if we can diagnose you. hehe

At 3/09/2006 4:28 PM, Blogger Faltenin said...

Hi my friend-
just to let you know that I DO come over and read, even though I rarely comment...

hugs, Fal

At 3/09/2006 4:33 PM, Blogger tshsmom said...

Aha, a lurker. Always the man of mystery, eh Fal?

At 3/10/2006 2:38 PM, Blogger greatwhitebear said...

It's actually and ADD thing. I can look at something tha needs to be done, but if it seems unpleasant or unintersting, I can't make myself do it. And then it becomes so overwhelming I can't face doing it.

So it doesn't get done until I HAVE no choice but to do it.

At 3/10/2006 5:26 PM, Blogger tshsmom said...

Same problem here GWB! The only difference is that I don't do the task because I'm a perfectionist. I won't attempt it if I can't do it perfectly. Then things stack up and I get overwhelmed. I've been told that this is an OCD behavior. Yours does sound more like ADD. Maybe we should hang out our shingle? ;)
A LOT of Z's messiness is ADD related. He can't organize himself. Part of it is OCD. He can't part with ANYTHING, including packaging, and toys that he's outgrown. He has a compulsion to keep ALL his possessions within reach.

At 3/13/2006 1:10 PM, Blogger Sagepaper said...

I agree with the cudos for your involved and informed parenting. Among other things, that does help Z feel comfortable discussing his experiences with you.

Z gets cudos from me. A willingness to be honest is one thing, and a good thing. The self-knowledge, insight, understanding of his different diagnoses are his gifts and accomplishments. You could make a different child feel at ease talking to you, probably. They might not have much that is useful to say, though. Z is not only using these abilities to help himself and you in sorting things out, he is building a foundation of good character.

"To thine own self be true." The earlier that is learned, the better. With that foundation, many talents and virtues can naturally be built upon it. Looking at it another way, Sun Tzu's The Art of War is required reading in many fields. One of the prominent lessons is know yourself and know your adversary. If you do not know yourself, you will ultimately be defeated.

Way to go Z!

At 3/13/2006 6:28 PM, Blogger tshsmom said...

Thanks Sage! You have given us a lot of insight that has been invaluable to us. Your honesty has been a good example for Z.
Everyone can use a mentor, and you've been the BEST!!
It's hard to get a guy to be "in touch with his feelings", but Z seems to be doing quite well in this regard.


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