Sunday, December 29, 2013
Tourette Syndrome Tic Resource Video
Thank you to everyone who submitted videos and contributed to this project! The video below is a Tourette Syndrome tic resource video to help parents, educators, physicians, and the general public to learn more about the wide variety of tics. Almost anything can be a tic. Tics can be highly noticeable or not noticeable at all. They can be loud or quiet, severe or mild. Please share this video to help others learn that there are a wide range of tics, and tics are not what you may think. Please share this video to help kids like Dominic, Jayden, Evan, Grant, Rowena, Samantha, Alyssa, and Trey live with more understanding and acceptance from others http://www.youtube.com/watch?v=XjgIfoSlFqQ&feature=youtu.be
Teal Stone Bracelet!
A late Hanukkah present from my mom! It's a teal stone bracelet. Teal is one of my favorite colors obviously. Tourette's Syndrome awareness! I may not be the best hand model, but I took a pictures anyway so I could post and share it :)
Sunday, December 22, 2013
Family Hanukkah Party Update (Tics and Sensory Issues)
Last night was my family Hanukkah party which I posted about a tiny bit before the party started. The onions were really bothering my eyes and were really triggering my facial tics. I was hoping that the stinging feeling in my eyes would go away when the party started, but the feeling in my eyes from the onions lasted pretty much all night. I guess I have my sensory processing issues to thank for that. So pretty much the whole night I was unable to suppress most of my facial tics like I usually am. I was suppressing all of my bigger tics of course such as my vocal tics (barking, my ray gun sounding tic, gasping, and my other squeaking/puppy dog sounding tics) and my bigger motor tics like hitting my chest and my larger head jerking and arm jerking movements.
I still had lots of fun at the party though! I look forward to our Hanukkah party every year. I was so glad that my two best friends from high school could be there with me too. I was able to go up with them to my bedroom or to play with the dog in my parents room when I needed to let out some of my bigger tics. I told both of them earlier in the month that I had started taking a new medication for my tics, Clonidine, and when we went upstairs and I started letting out my bigger tics like hitting myself in the chest, they asked me how the medication was and if it was helping. I told them that I couldn't quite tell if my medication was helping yet but that I didn't think it was helping that much and that it has side effects like lightheadedness and lack of appetite. They told me though that I seemed to be ticcing a lot less than the last time we hung out. The last time we hang out though was right after I came back from camp twitch and shout when my tics were SO crazy from being around everyone at camp, so really any level of ticcing would seem more mild than that! I'm still convinced that the medication isn't doing anything besides giving me side effects and it's been a month now that i've been on it.
Anyway, at the party one of my friends said something to me that was so sweet and made my night! She said that sometimes when she is with her friends at school one of them will make a Tourette's joke and do something silly and then afterwards say "hahaha dude I have Tourette's". She told me that whenever she hears someone make a comment like this she'll immediately say back "Hey, that's not funny. My best friend has Tourette's." I think this is so sweet of her and I love that she says this. It made my night!
I mostly hung out with my two best friends during the party, but I always feel like I want to talk more with my cousin who also has Tourette's. I didn't talk too much with her last night though because there were so many people at the party and I was so busy trying to keep up with talking to my two best friends, talking with my family, and escaping to my bedroom to let out my bigger tics. The last time I texted with my cousin she told me that she is on the Clonidine patch and on the patch she is 100% tic free. Although one of her tics is punching other people and last night I saw her punch her dad. While I thought that she might have been just fooling around, I also think it may very well have been a tic because the punch looked pretty darn hard to me. It looked like there was a lot of force behind it, the kind of force that is usually behind a tic. Who knows though, I might be wrong, but it just looked like such a forceful punch, too forceful for just playing around. Maybe I will text her tonight and apologize for not talking to her much and ask her if her meds are still working for her because my meds are not working yet for me! Frustrating!
Another thing that happened during the party was that my uncle made fun of my dysgraphia which my mom was not to happy about. My mom told me to address the cards for the gifts to my cousins, and I did. I have dysgraphia though which comes along with the Tourette's. It's basically like dyslexia but for handwriting. My handwriting has always been a struggle for me and even with Occupational Therapy to try to help improve the dysgraphia and with tutoring as well my handwriting still looks like the handwriting of a young child and there's not much I can do about it even when I put all my effort into making the writing look neat. Sometimes I will also mix up my letters when writing such as write a "b" instead of a "d" and I find it very difficult to write in a straight line and not have my line of writing slant.
So when my cousin opened up the card I had addressed, my uncle said "who addressed these cards?". I said I addressed them and that I know my handwriting isn't very good. His response was "Yeah. It looks like a first grader wrote it!". I laughed and kind of went along with the joke saying that it would have looked more like a kindergartners handwriting if I hadn't put so much effort into it. My mom was apparently upset by this though and later on said to me that she didn't like how my uncle was making fun of my handwriting. I was okay with it because i'm used to people joking around about my tics and other associated disorders and mostly enjoy when it's made light of, but I guess it really did upset my mom!
Anyway, I also need to make a post about my brother and the surprising kindness he showed me last night. But I have to go to a dinner thing now with my grandpa and cousins from my moms side who are in town, so I will post about my brother later!
Also the camp twitch and shout counselor reunion is coming up shortly and i'm sooooo excited!!! I get to see some of my co-counselors who I love and other counselors from camp too!!! Sooooo excited!!!!
I still had lots of fun at the party though! I look forward to our Hanukkah party every year. I was so glad that my two best friends from high school could be there with me too. I was able to go up with them to my bedroom or to play with the dog in my parents room when I needed to let out some of my bigger tics. I told both of them earlier in the month that I had started taking a new medication for my tics, Clonidine, and when we went upstairs and I started letting out my bigger tics like hitting myself in the chest, they asked me how the medication was and if it was helping. I told them that I couldn't quite tell if my medication was helping yet but that I didn't think it was helping that much and that it has side effects like lightheadedness and lack of appetite. They told me though that I seemed to be ticcing a lot less than the last time we hung out. The last time we hang out though was right after I came back from camp twitch and shout when my tics were SO crazy from being around everyone at camp, so really any level of ticcing would seem more mild than that! I'm still convinced that the medication isn't doing anything besides giving me side effects and it's been a month now that i've been on it.
Anyway, at the party one of my friends said something to me that was so sweet and made my night! She said that sometimes when she is with her friends at school one of them will make a Tourette's joke and do something silly and then afterwards say "hahaha dude I have Tourette's". She told me that whenever she hears someone make a comment like this she'll immediately say back "Hey, that's not funny. My best friend has Tourette's." I think this is so sweet of her and I love that she says this. It made my night!
I mostly hung out with my two best friends during the party, but I always feel like I want to talk more with my cousin who also has Tourette's. I didn't talk too much with her last night though because there were so many people at the party and I was so busy trying to keep up with talking to my two best friends, talking with my family, and escaping to my bedroom to let out my bigger tics. The last time I texted with my cousin she told me that she is on the Clonidine patch and on the patch she is 100% tic free. Although one of her tics is punching other people and last night I saw her punch her dad. While I thought that she might have been just fooling around, I also think it may very well have been a tic because the punch looked pretty darn hard to me. It looked like there was a lot of force behind it, the kind of force that is usually behind a tic. Who knows though, I might be wrong, but it just looked like such a forceful punch, too forceful for just playing around. Maybe I will text her tonight and apologize for not talking to her much and ask her if her meds are still working for her because my meds are not working yet for me! Frustrating!
Another thing that happened during the party was that my uncle made fun of my dysgraphia which my mom was not to happy about. My mom told me to address the cards for the gifts to my cousins, and I did. I have dysgraphia though which comes along with the Tourette's. It's basically like dyslexia but for handwriting. My handwriting has always been a struggle for me and even with Occupational Therapy to try to help improve the dysgraphia and with tutoring as well my handwriting still looks like the handwriting of a young child and there's not much I can do about it even when I put all my effort into making the writing look neat. Sometimes I will also mix up my letters when writing such as write a "b" instead of a "d" and I find it very difficult to write in a straight line and not have my line of writing slant.
So when my cousin opened up the card I had addressed, my uncle said "who addressed these cards?". I said I addressed them and that I know my handwriting isn't very good. His response was "Yeah. It looks like a first grader wrote it!". I laughed and kind of went along with the joke saying that it would have looked more like a kindergartners handwriting if I hadn't put so much effort into it. My mom was apparently upset by this though and later on said to me that she didn't like how my uncle was making fun of my handwriting. I was okay with it because i'm used to people joking around about my tics and other associated disorders and mostly enjoy when it's made light of, but I guess it really did upset my mom!
Anyway, I also need to make a post about my brother and the surprising kindness he showed me last night. But I have to go to a dinner thing now with my grandpa and cousins from my moms side who are in town, so I will post about my brother later!
Also the camp twitch and shout counselor reunion is coming up shortly and i'm sooooo excited!!! I get to see some of my co-counselors who I love and other counselors from camp too!!! Sooooo excited!!!!
Monday, December 16, 2013
10 Ways to Respect Children and Adults With Tourette's Syndrome
1. "Seeing the Tourette's an integral part, but only one part, of a human being."
2. "Treating them the same as you would anyone else."
3. "Caring enough to educate yourself about what Tourette's Syndrome is."
From Jocelyn, a mother of a child living with Tourette's Syndrome:
"This is my 12 year old son. He was diagnosed when he was in 3rd grade. We live in a small town in Texas. Hunter at that time had some very violent neck jerk tics. He was in a lot of pain. The drs had him on some heavy duty meds that made him so very tired. He slept during PE, recess, And free periods at school. They allowed him to sleep in the nurses office. Hunter maintained his A honor roll status throughout all of this. Our school administrators, sought out help to understand Hunter and his new needs. They found speakers to come to our school and explain to Hunters classmates what Tourette Syndrome was and how it effected Hunter. They fully embraced Hunter. I am forever grateful to our school for this. Our church raised money during VBS and gave it to the TSA. All VBS shirts had a teal ribbon printed on them. Our community brought awareness about TS and awareness brings education and education helps eliminate judgement. For this, I am grateful. It has made life so much easier for Hunter. We have had teachers attended workshops to understand kids with TS, ADHD, OCD and other co-morbids. They wanted to do this. They sought out these workshops."
4. "Teaching others (your friend's, family, peers, co-workers) that different is OK."
From Heather, a mother of a child living with Tourette's Syndrome:
"I am always a bit apprehensive before parent/teacher conferences.Gavin is turning 10 on Wednesday, 12/18. and was diagnosed at age 7. Last year, I met with Gavin's 3rd teacher and of course, his TS came up. She said sometimes Gavin will jump to his feet in class. The first couple times it surprised her until she realized that it was a tic so now when Gavin will jump to his feet, she tells the whole class to get up, jump around, turn around, and sit down. For me, that was so wonderful to hear. She turned it into a teachable opportunity...to encourage his comfort and self esteem. She didn't alienate him. She sort of made him to gauge to register "break time". And that made Gavin a hero!"
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5. "Asking questions instead of staring"
6. "Not pitying them."
7. "Not limiting them to a diagnosis—instead, giving them the tools and support to reach their highest potential."
8. "Not making any assumptions."
9. "Accepting, not just tolerating."
10. "Understanding that it is our differences that make us individuals and make life interesting!"
From Jennifer, a mother of a child living with Tourette's:
"My 9 yr old with ts had a friend in class write her a card that said how special she thought she was and how she wished she could twirl like she does - that is her "big tic" right now.Her name is Charle - 9 yrs old and in 4th grade - TS, OCD, SPD (Sensory processing disorder) and Anxiety."
2. "Treating them the same as you would anyone else."
3. "Caring enough to educate yourself about what Tourette's Syndrome is."
From Jocelyn, a mother of a child living with Tourette's Syndrome:
"This is my 12 year old son. He was diagnosed when he was in 3rd grade. We live in a small town in Texas. Hunter at that time had some very violent neck jerk tics. He was in a lot of pain. The drs had him on some heavy duty meds that made him so very tired. He slept during PE, recess, And free periods at school. They allowed him to sleep in the nurses office. Hunter maintained his A honor roll status throughout all of this. Our school administrators, sought out help to understand Hunter and his new needs. They found speakers to come to our school and explain to Hunters classmates what Tourette Syndrome was and how it effected Hunter. They fully embraced Hunter. I am forever grateful to our school for this. Our church raised money during VBS and gave it to the TSA. All VBS shirts had a teal ribbon printed on them. Our community brought awareness about TS and awareness brings education and education helps eliminate judgement. For this, I am grateful. It has made life so much easier for Hunter. We have had teachers attended workshops to understand kids with TS, ADHD, OCD and other co-morbids. They wanted to do this. They sought out these workshops."
4. "Teaching others (your friend's, family, peers, co-workers) that different is OK."
From Heather, a mother of a child living with Tourette's Syndrome:
"I am always a bit apprehensive before parent/teacher conferences.Gavin is turning 10 on Wednesday, 12/18. and was diagnosed at age 7. Last year, I met with Gavin's 3rd teacher and of course, his TS came up. She said sometimes Gavin will jump to his feet in class. The first couple times it surprised her until she realized that it was a tic so now when Gavin will jump to his feet, she tells the whole class to get up, jump around, turn around, and sit down. For me, that was so wonderful to hear. She turned it into a teachable opportunity...to encourage his comfort and self esteem. She didn't alienate him. She sort of made him to gauge to register "break time". And that made Gavin a hero!"
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5. "Asking questions instead of staring"
From Jenn, a mother of two children living with Tourette's Syndrome:
"I can understand when someone glances over at my children when they tic - A quick glance to acknowledge your surroundings and be sure nothing wrong is occurring is acceptable.. however when you stare too long it makes things worse. Not too long ago my daughter was outside of our pediatricians office on the ground with full blown tics. Two people were near by.. one leaving the office and one entering. The one leaving had a child with them. The child said hello. Sam didn't answer and the parent made a rude comment about how disrespectful she was for not saying hello in return.. the other parent came towards me and had a look of anger and terror and asked me what one earth I was doing to my child. I turned to her and said she has Tourette Syndrome and was ticking. She apologized and walked inside where shortly after she came out to see if we needed anything. The bottom line is that I was left sad and angry. I wasn't hurting my child, she wasn't on display for people to watch as though in a circus nor was she rude.. she was however in physical and we both were in emotional pain. So to sum it up - people can respect us by not bringing any attention to the fact she has TS."
6. "Not pitying them."
7. "Not limiting them to a diagnosis—instead, giving them the tools and support to reach their highest potential."
8. "Not making any assumptions."
From a mother of a child living with Tourette's:
"While my 9 yr old was "squeeking" in a grocery store, we had one person (out of 50) ask if I and if she were ok...out of genuine concern. Still the first and last time this happened to us. We were both so grateful. Her name is Charle - 9 yrs old and in 4th grade - TS, OCD, SPD (Sensory processing disorder) and Anxiety."
9. "Accepting, not just tolerating."
10. "Understanding that it is our differences that make us individuals and make life interesting!"
From Jennifer, a mother of a child living with Tourette's:
"My 9 yr old with ts had a friend in class write her a card that said how special she thought she was and how she wished she could twirl like she does - that is her "big tic" right now.Her name is Charle - 9 yrs old and in 4th grade - TS, OCD, SPD (Sensory processing disorder) and Anxiety."
Tic Resource Video
From my experience running this page and from my experience working in a Tourette's research lab, I have noticed that a lot of parents with children with Tourette's, particular those who have children who are new to the diagnosis or are in the process of being diagnosed, are not aware of the wide range of tics that exist. Also those who do not have a child or another loved one in their life who has TS especially do not understand the wide range of tics that can exist or don't recognize tics when they happen. I hear from parents that they are frustrated with extended family members who do not understand what things are tics and what things are not.
In response to this I have decided that with your help over my winter break I am going to try to make a video resource for parents and extended family members of individuals with TS. This video resource will help show the wide variety of tics and will help others to begin to recognize tics, what they are, and how they affect an individual with TS.
I need YOUR help in order to create this resource though! I need videos of your kids tics or your tics. Here's what to do if you want to participate/ help out with this project:
1. Take a video of yourself of your child saying "Hi, my name is....and I have Tourette's Syndrome"
2. Then either in the same video or in a separate video either film your child's tics or film a video of your child describing their tics. Either one works! Also if you have previous videos of your children's or your tics, you can send those in as well.
3. Upload the videos to youtube as "unlisted" then send me the links! This will allow only those with the link to the video to view the video. The video will not yet be public. You can send the links to either my inbox on this page or to my e-mail: jspershing93@gmail.com
That's it! It's that simple! If you have any questions about this project, feel free to ask. I can't wait to see your videos! If you are interested in participating, please comment so I know how many videos to expect!
In response to this I have decided that with your help over my winter break I am going to try to make a video resource for parents and extended family members of individuals with TS. This video resource will help show the wide variety of tics and will help others to begin to recognize tics, what they are, and how they affect an individual with TS.
I need YOUR help in order to create this resource though! I need videos of your kids tics or your tics. Here's what to do if you want to participate/ help out with this project:
1. Take a video of yourself of your child saying "Hi, my name is....and I have Tourette's Syndrome"
2. Then either in the same video or in a separate video either film your child's tics or film a video of your child describing their tics. Either one works! Also if you have previous videos of your children's or your tics, you can send those in as well.
3. Upload the videos to youtube as "unlisted" then send me the links! This will allow only those with the link to the video to view the video. The video will not yet be public. You can send the links to either my inbox on this page or to my e-mail: jspershing93@gmail.com
That's it! It's that simple! If you have any questions about this project, feel free to ask. I can't wait to see your videos! If you are interested in participating, please comment so I know how many videos to expect!
Saturday, December 14, 2013
Happy Holidays From Camp Twitch and Shout! :)
Got this from camp twitch and shout today! I miss it! And just last night I had a dream about camp! I dreamt that I went back for my second year as a counselor and I loved my campers and my co-counselers a and I was having a great time. I sign of what's to come!
Thursday, December 12, 2013
No More Tic Logs For Now
So I decided i'm going to stop logging my tics because it's annoying to have to do it at the end of every day and it makes my tics worse trying to pay attention to which tics I have during the day.
Tuesday, December 10, 2013
Tic Log 12/10/13
12/10/13: In the lab for most of the day, then came back and started work on Developmental psyc paper.
Night before: Very tired so took medicine early. Lots of tics in bed. Squeaking tics and wall hitting tics. (Bad tics)
Morning: Mild tics
Afternoon: Moderate tics, facial tics, head tics, and some vocal tics. Facial tics and head tics felt more powerful than usual. Diaphragm tics, stomach muscle moving tics, and breath holding tics.
Evening: Moderate tics, facial tics, head tics, squeaking vocal tics, purring lip tic.
Night before: Very tired so took medicine early. Lots of tics in bed. Squeaking tics and wall hitting tics. (Bad tics)
Morning: Mild tics
Afternoon: Moderate tics, facial tics, head tics, and some vocal tics. Facial tics and head tics felt more powerful than usual. Diaphragm tics, stomach muscle moving tics, and breath holding tics.
Evening: Moderate tics, facial tics, head tics, squeaking vocal tics, purring lip tic.
Monday, December 9, 2013
Tic Log 12/9/13
12/9: One exam today, the rest of the day off.
Night before: No problems with sleep!
Morning: Mild tics
Afternoon: Mild tics
Evening: Moderate tics. Tonight I did my "ruh" tic for the first time in about a week. I did it quite a few times in addition to my regular squeaking tics, listing tics, and lip tics that make a purring sound. Hard blinking too
Night before: No problems with sleep!
Morning: Mild tics
Afternoon: Mild tics
Evening: Moderate tics. Tonight I did my "ruh" tic for the first time in about a week. I did it quite a few times in addition to my regular squeaking tics, listing tics, and lip tics that make a purring sound. Hard blinking too
Sunday, December 8, 2013
Tic Log 12/8/13
12/8: Study Sunday. Studied for my archaeology test and helped make candy grams with a friend and her boy friend for my sorority.
Night before: Came home from semi formal at 12:00. Took a shower. Took meds around 1:00. Asleep very very quickly because I was sooooo tired from semi formal which gave me a headache from the loud music.
Morning: Not many tics (Mild tics)
Afternoon: (Mild tics)
Evening: Vocal tics and hitting tics triggered by studying with friends. Yes, I know it's kind of a bummer being with my friends triggers my tics. It's okay though. I'm used to it and it doesn't make me spend any less time with them. They understand my tics and I feel comfortable ticcing around them. They just ignore my tics and treat them as normal. (Moderate tics)
Night before: Came home from semi formal at 12:00. Took a shower. Took meds around 1:00. Asleep very very quickly because I was sooooo tired from semi formal which gave me a headache from the loud music.
Morning: Not many tics (Mild tics)
Afternoon: (Mild tics)
Evening: Vocal tics and hitting tics triggered by studying with friends. Yes, I know it's kind of a bummer being with my friends triggers my tics. It's okay though. I'm used to it and it doesn't make me spend any less time with them. They understand my tics and I feel comfortable ticcing around them. They just ignore my tics and treat them as normal. (Moderate tics)
Tic Log 12/8
Mild tics. Nothing noteworthy to report. Facial tics and head tics. Big day before semi-formal for my sorority which I brought a date too. Spent most of the day doing last minute things to get ready for that, like getting a haircut and style and getting shoes for my dress. Busy day kept me distracted with minimal tics.
Friday, December 6, 2013
Tic Log 12/6
12/6: Last day before reading week. Went into the lab to finish up some final touches on the program before we start running subjects next semester. Secret Snowflake sorority party.
Last night: Took meds at 11:30- 11:45 ish. My suitemates were talking outside my door! They weren't even being loud or anything but I was so sensitive to the sound of their voices as they talked. I tried to ignore it but the sound of people talking while I was trying to sleep was too much. Must be a sensory thing. Their voices started triggering major tics even after I had just taken my medicine. Hitting the bed and wall tics with my fist. Loud vocal tics. Eventually I went out and asked if they could be quiet. As soon as they stopped talking I feel asleep within 10-15 min which was around 12:30ish.
Morning: Sniffling tics (Mild tics).
Afternoon: Sniffling tics and facial tics (Mild tics).
Evening: Squeaking vocal tics, facial tics, head/neck tics, hitting tics, blinking tics (Moderate tics)
Also my finger now looks like I was bitten by a spider or something with two sharp teeth! I haven't had any more tics involving scratching/ digging my nail into my finger since that one night and since opening up the blister. It's healing though, which is good.
Also my finger now looks like I was bitten by a spider or something with two sharp teeth! I haven't had any more tics involving scratching/ digging my nail into my finger since that one night and since opening up the blister. It's healing though, which is good.
Tourette's Awareness Pictures!
Here are three Tourette's awareness pictures that I made in the past few days that have been circulating the web thanks to the awesome people who follow my Tourette's Syndrome Awareness Facebook Page: https://www.facebook.com/pages/A-Little-Bit-Different-Tourettes-Syndrome/164459540340080
Thursday, December 5, 2013
Atlanta Tourette Syndrome Conference, "Breaking Down the Barriers Conference"
Hey everyone! If you live in Atlanta, or in elsewhere in Georgia, I wanted to let you know about the 2014 Tourette Syndrome Conference, "Breaking Down the Barriers Conference". It will be held on February 8th in Atlanta, Georgia Atlanta Marriott Perimeter Center and is sponsored by the Brad Cohen Tourette Foundation. Here is some more information about the conference and you can also find more information athttp://tourettesyndromeconference.com/
"Our goal is to break down the barriers that individuals with TS, OCD,
and ADHD face at home, school and in social settings.
WHO SHOULD ATTEND THE CONFERENCE?
Conference is for Individuals with TS, Teachers, Educators, Parents, Psychologists, Psychiatrists, therapists, Social Workers, Counselors, Physicians, Neurologists, Health Care Professionals, Nurse Practitioners and more.
Come learn the latest and greatest from our team of professionals that will be presenting.
-Be inspired by the story of Brad Cohen!
-Learn the latest treatments from highly acclaimed Yale University’s ---Dr. James Leckman.
-Take in the newest ideas of CBIT (Cognitive Behavior Therapy) from -Texas A&M’s Dr. Doug Woods.
-Hear the educational strategies for the classroom from Sheryl Pruitt.
-Advance your knowledge on the behaviors you are dealing with as Leslie Packer shares."
"Our goal is to break down the barriers that individuals with TS, OCD,
and ADHD face at home, school and in social settings.
WHO SHOULD ATTEND THE CONFERENCE?
Conference is for Individuals with TS, Teachers, Educators, Parents, Psychologists, Psychiatrists, therapists, Social Workers, Counselors, Physicians, Neurologists, Health Care Professionals, Nurse Practitioners and more.
Come learn the latest and greatest from our team of professionals that will be presenting.
-Be inspired by the story of Brad Cohen!
-Learn the latest treatments from highly acclaimed Yale University’s ---Dr. James Leckman.
-Take in the newest ideas of CBIT (Cognitive Behavior Therapy) from -Texas A&M’s Dr. Doug Woods.
-Hear the educational strategies for the classroom from Sheryl Pruitt.
-Advance your knowledge on the behaviors you are dealing with as Leslie Packer shares."
Tic Log 12/5/13
12/5/13: Today I had one exam (Developmental Psyc) and then after my exam I'm going to go try on dresses for my semi-formal that I'm going to with my date (I went to his fraternity's semi-formal a few weeks ago) and going to grab some dinner too.
Night before: Took Clonidine at 11:00. Asleep by 11:45ish. Took about 15 minutes to fall asleep. Note: I take the Clonidine 30 minutes before I get in bed, so I got in bed at about 11:30ish. I had some tics in bed, my hitting the wall tic with a closed fist and my squeaking vocal tics. (Moderate tics)
Morning: Sniffling tics (mild tics)
Afternoon: Sniffling tics and some other vocal tics (mild tics)
Evening: Vocal tics (my vocal tic that I call "purring" with my lips, squeaking), stomach tightening, hard blinking, facial tics, eye rolling. (Moderate tics)
Night before: Took Clonidine at 11:00. Asleep by 11:45ish. Took about 15 minutes to fall asleep. Note: I take the Clonidine 30 minutes before I get in bed, so I got in bed at about 11:30ish. I had some tics in bed, my hitting the wall tic with a closed fist and my squeaking vocal tics. (Moderate tics)
Morning: Sniffling tics (mild tics)
Afternoon: Sniffling tics and some other vocal tics (mild tics)
Evening: Vocal tics (my vocal tic that I call "purring" with my lips, squeaking), stomach tightening, hard blinking, facial tics, eye rolling. (Moderate tics)
Wednesday, December 4, 2013
Tic Log 12/4/13
12/4/13: Three classes today. Day before Developmental Psyc exam which is stressful because I have to do most of my studying today and tomorrow morning as I feel that I have not studied nearly enough.
Night before: Took Clonidine around 11:00, feel asleep easily about 15-30 min
Morning: Rough morning. Woke up at 6:00ish and didn't fall back to sleep until 8:00ish. When I was trying to fall back asleep during this period my legs were ticcing a lot and wouln't stop moving. feet rubbing together and against bed and blanket. Neck squeezing (which I really haven't had before very much) which resulted in the right side of my neck being sore later on when I woke up, some squeaking vocal tics, and I had my scratching tics where I scratch all over my body. In also had a scratching tic where I scratch/ dig my thumb nail into my pointer finger on my right hand. It caused both a blister and red scraped on the side of my pointer finger. Finally I ave up at going back to sleep and went on my computer for about 30 minutes and then after that I was able to go back to sleep until about 10:00am. (Bad tics)
This is what my finger looked like in the morning when I woke up at 10am:
Some head and eye tics in archaeology class (mild tics)
Afternoon: Mild eye tics and head tics
Evening: In my evening class my tics got really bad. I had a lot of really hard head shaking tics and I also was having full body tics, punching tics (when I punch my chest, my arm, and my leg), and lots of facial tics. Every time I do facial tics today that involve muscles in my neck it hurts my neck since my neck is sore from my neck squeezing tics I had early this morning. My tics calmed down after class, but now i'm still having some vocal tics (wheezing, coughing, and squeeking). Also I ripped open my blister on my finer now....I put a band-aid on it which is helping it feel better for now though.(Bad tics).
Later in the evening I had more squeaking vocal tics, and tics where I hit things (in this case the couch and the wall) with a closed fist. (Moderate to Bad tics).
Night before: Took Clonidine around 11:00, feel asleep easily about 15-30 min
Morning: Rough morning. Woke up at 6:00ish and didn't fall back to sleep until 8:00ish. When I was trying to fall back asleep during this period my legs were ticcing a lot and wouln't stop moving. feet rubbing together and against bed and blanket. Neck squeezing (which I really haven't had before very much) which resulted in the right side of my neck being sore later on when I woke up, some squeaking vocal tics, and I had my scratching tics where I scratch all over my body. In also had a scratching tic where I scratch/ dig my thumb nail into my pointer finger on my right hand. It caused both a blister and red scraped on the side of my pointer finger. Finally I ave up at going back to sleep and went on my computer for about 30 minutes and then after that I was able to go back to sleep until about 10:00am. (Bad tics)
This is what my finger looked like in the morning when I woke up at 10am:
Some head and eye tics in archaeology class (mild tics)
Afternoon: Mild eye tics and head tics
Evening: In my evening class my tics got really bad. I had a lot of really hard head shaking tics and I also was having full body tics, punching tics (when I punch my chest, my arm, and my leg), and lots of facial tics. Every time I do facial tics today that involve muscles in my neck it hurts my neck since my neck is sore from my neck squeezing tics I had early this morning. My tics calmed down after class, but now i'm still having some vocal tics (wheezing, coughing, and squeeking). Also I ripped open my blister on my finer now....I put a band-aid on it which is helping it feel better for now though.(Bad tics).
Later in the evening I had more squeaking vocal tics, and tics where I hit things (in this case the couch and the wall) with a closed fist. (Moderate to Bad tics).
What We Wish You Knew About Tourette Syndrome.....
Tourette Syndrome is a highly misunderstood neurological disorder. There are so many misconceptions out there that make the lives of those with Tourette more difficult. It hurts us when we hear things like "Can't you just stop?" and "You don't have Tourette's! You don't swear!" Every child, teen, and adult with Tourette only wishes to be understood. So with the help of others living with the condition, here are the things we wish you knew about Tourette's Syndrome.
"My 9 your old daughter with TS wishes kids would not think she is making it up, especially after them talking about a particular tic makes her do it. It is very understandable to me why a kid would think "hey, you haven't been doing that at all and now that I talked about it you have done it 20 times - your faking". But the power of suggestion is very real with TS and that is why education is so very important. I usually try to point a family towards the tsa-org website or tell them to google it. Often if a child can read it they then really believe it. Most adults also don't understand "the power of suggestion" either. Good luck and great job!"
From Brandy, a mother of a child living with Tourette's:
" I wish others realized that tics wax and wane and severity is different from person to person. My daughter's are mild but they exist. Also, just because you do not see them or do not recognize that constant throat clearing as a tic- it is one. Also, she is amazing and her tics just make her that much more special! *Ansley is 9 years old, her tics are mild. She also has OCD, anxiety, SPD, ADD, dyslexia and dyscalculia. She has the biggest heart, loves people and loves to draw pictures for people she cares about. She wants everyone to be happy and enjoys making presents for people in the form of her art work which is mainly about dogs. When she grows up she wants to be a veterinarian or train dogs to help people. I remind her that she can do anything she wants to do and encourage her."
From Janet, a mother of a child living with Tourette's:
"I asked my 7 year old son what he'd like people to know about TS and he said, "That I can't help it and am not trying to be rude and that it really hurts sometimes."
From Jenn, a mother of two children living with Tourette's:
"My children both have TS. As their mom I would like others to know that TS, while a huge part of their lives, is not who there as a person. I am sure Sam would say that she wishes people knew how difficult it is sometimes, the physical and emotional fatigue and pain.. she does a great job and getting through and at times is so good at it that no one really knows how much energy she spends on deceiving others. My son would probably want others to know that when he curses or has to touch or scream that he really doesn't have control over it. Many people assume he does since it comes across as planned - it is not."
From Nicole, a mother of a child living with Tourette's:
"My son said he wishes that some people knew that he can't stop his tics when a lot of people tell him to stop doing them!"
From Claire:
"That it constantly changes, you get used to dealing with one thing and it's replaced or joined by something else."
From Thomas, an adult living with Tourette's:
"I wish people knew that it can't be controlled."
From Clo:
"At times, alot of times, it's painful. And even potentially dangerous. I have a hiccup and gagging tic, I've become prone to choking."
From Justine, an adult living with Tourette's:
" I wish people would realize that just because tics aren't noticeable does not mean that they don't exist. My Tourette's in mild enough that most people don't notice my tics. But I definitely deal with the psychological, emotional, and physical struggles just like all other Touretters."
From Michelle:
"That there are a BUNCH of OTHER neurological challenges not "just" tics! That you can't determine whether someone is "ok" by "sight" - children/people might very well LOOK like they aren't challenged but ARE!"
From Stacey, a mother of a child with Tourette's:
" I wish people realized it is congenital. People are BORN with it. I wish people knew that it is a NEUROLOGICAL disorder and that it can't always be controlled, even with medication. I wish people understood that it is MORE than just Tourettes. The co-morbidities that accompany TS are many. They can be just as debilitating as the TS itself. My son has TS+. I wish people could spend a day, heck and HOUR in his shoes. There would be far more acceptance, understanding, tolerance and kindness."
Also: "One cannot simply "get" Tourettes. There is something called a "Tic Disorder" that can come on due to environmental factors, but mostly caused by medications. Happens. Once the person affected is removed from said environment and medication that caused the tics...it ceases."
From Julianna:
" That we can not control it, I wish people would stop looking at us like stop making that noise silly. I wish they could understand that it is not our fault and that we have no control over it"
From Jennifer, a mother of a child living with Tourette's:
From Brandy, a mother of a child living with Tourette's:
" I wish others realized that tics wax and wane and severity is different from person to person. My daughter's are mild but they exist. Also, just because you do not see them or do not recognize that constant throat clearing as a tic- it is one. Also, she is amazing and her tics just make her that much more special! *Ansley is 9 years old, her tics are mild. She also has OCD, anxiety, SPD, ADD, dyslexia and dyscalculia. She has the biggest heart, loves people and loves to draw pictures for people she cares about. She wants everyone to be happy and enjoys making presents for people in the form of her art work which is mainly about dogs. When she grows up she wants to be a veterinarian or train dogs to help people. I remind her that she can do anything she wants to do and encourage her."
From Janet, a mother of a child living with Tourette's:
"I asked my 7 year old son what he'd like people to know about TS and he said, "That I can't help it and am not trying to be rude and that it really hurts sometimes."
From Jenn, a mother of two children living with Tourette's:
"My children both have TS. As their mom I would like others to know that TS, while a huge part of their lives, is not who there as a person. I am sure Sam would say that she wishes people knew how difficult it is sometimes, the physical and emotional fatigue and pain.. she does a great job and getting through and at times is so good at it that no one really knows how much energy she spends on deceiving others. My son would probably want others to know that when he curses or has to touch or scream that he really doesn't have control over it. Many people assume he does since it comes across as planned - it is not."
From Nicole, a mother of a child living with Tourette's:
"My son said he wishes that some people knew that he can't stop his tics when a lot of people tell him to stop doing them!"
From Claire:
"That it constantly changes, you get used to dealing with one thing and it's replaced or joined by something else."
From Thomas, an adult living with Tourette's:
"I wish people knew that it can't be controlled."
From Clo:
"At times, alot of times, it's painful. And even potentially dangerous. I have a hiccup and gagging tic, I've become prone to choking."
From Justine, an adult living with Tourette's:
" I wish people would realize that just because tics aren't noticeable does not mean that they don't exist. My Tourette's in mild enough that most people don't notice my tics. But I definitely deal with the psychological, emotional, and physical struggles just like all other Touretters."
From Michelle:
"That there are a BUNCH of OTHER neurological challenges not "just" tics! That you can't determine whether someone is "ok" by "sight" - children/people might very well LOOK like they aren't challenged but ARE!"
From Stacey, a mother of a child with Tourette's:
" I wish people realized it is congenital. People are BORN with it. I wish people knew that it is a NEUROLOGICAL disorder and that it can't always be controlled, even with medication. I wish people understood that it is MORE than just Tourettes. The co-morbidities that accompany TS are many. They can be just as debilitating as the TS itself. My son has TS+. I wish people could spend a day, heck and HOUR in his shoes. There would be far more acceptance, understanding, tolerance and kindness."
Also: "One cannot simply "get" Tourettes. There is something called a "Tic Disorder" that can come on due to environmental factors, but mostly caused by medications. Happens. Once the person affected is removed from said environment and medication that caused the tics...it ceases."
From Julianna:
" That we can not control it, I wish people would stop looking at us like stop making that noise silly. I wish they could understand that it is not our fault and that we have no control over it"
Tuesday, December 3, 2013
Tic Log 12/3/13
Tic Log 12/3/13: Today I have two classes. One of the classes is a trigger class for my tics because it has about 10 people. This class though combines the freshman and older students since its the final class. It's pretty much a party though so maybe it won't set my tics off.
Night before: Took Clonidine at 11:20. Fell asleep easily, 15-30 min at around 12:00pm. Slept until 10:45am. (I'm going to have to fix this waking up late thing next semester when I have 10:00 classes.)
Morning: Eye tics, facial tics, a few vocal tics (a vocal tic I do with my lips that I call purring) (Mild Tics)
Afternoon: In psych class, head tics, facial tics, hitting my leg tic, and small squeaking vocal tics with mouth closed (Mild to Moderate tics).
Was a little tired in pscych class but soon wasn't anymore. Didn't feel the need to take a nap today.
Evening: Eye tics, head tics, arm stretching/jerking tics, vocal tics (my typical squeak) (and whistling too) (and sniffling) (Moderate tics). In class and after/before class.
Night before: Took Clonidine at 11:20. Fell asleep easily, 15-30 min at around 12:00pm. Slept until 10:45am. (I'm going to have to fix this waking up late thing next semester when I have 10:00 classes.)
Morning: Eye tics, facial tics, a few vocal tics (a vocal tic I do with my lips that I call purring) (Mild Tics)
Afternoon: In psych class, head tics, facial tics, hitting my leg tic, and small squeaking vocal tics with mouth closed (Mild to Moderate tics).
Was a little tired in pscych class but soon wasn't anymore. Didn't feel the need to take a nap today.
Evening: Eye tics, head tics, arm stretching/jerking tics, vocal tics (my typical squeak) (and whistling too) (and sniffling) (Moderate tics). In class and after/before class.
10 Things You Shouldn't Say to Someone Who Has Tourette's Syndrome
10 Things You Shouldn't Say to Someone Who Has Tourette's Syndrome
1.) "You're really pretty/ handsome for someone with Tourette's" or "You're too pretty/handsome to have Tourette's"
Yes. People actually say this. Or at least make comments like this online.
In responce to this, here are the words of a beautiful young woman named Megan who has Tourette's:
"Are you saying that people who have disabilities or neurological conditions are not supposed to be aesthetically pleasing or to have a certain beauty that fits in what society finds acceptable? This warped sense of beauty? What if your child has a disability and you tell them that they are too normal or beautiful to have a disability? Imagine how they'd feel? And you know what? I have Tourette's and I am gosh damn sexy, beautiful, confident, wonderful, amazing, compassionate, loving, caring, considerate, resilient, and strong-minded. Tourette's has made me become so much more compassionate towards other people. Tourette's has helped me learned cultural competency and enables me to connect with ANYONE at ANY TIME on a mental, emotional, and spiritual level. Now that's beautiful."
2.) "I have this eye twitch when I get stressed so I know exactly what you're going through."
From Jenn, a mother of two children with Tourette's:
"Really? all day every day for weeks months and years? wow. You may want to get that checked out (depending on how long they have it). If its not something serious then politely change the topic. Some people don't realize how they come across. My friends daughter says things like this ALL the time.. some days my daughter cries.. other days she will laugh."
3.) "Can't you just stop?"
From Kerri, a mother of a 13 year old son with Tourette's:
"I like to say to those people that if he (son, 13yo) could stop, he would. It bothers him a whole lot more than it will EVER bother you. It's a lot like a staring contest: when you keep yourself from blinking for an extended amount of time, once you give in & blink, your eyes burn & you blink a whole lot more to ease the burning in your eyes. Same with stopping/curbing his tics. And no, he won't stop."
From Jo, an adult living with Tourette's:
I often have a hard time getting people who do not have TS to understand why I can't 'just stop'. I liken it to not blinking. How long can you NOT blink for? Sometimes we have a certain degree of control over our tics, sometimes we have none and sometimes we can suppress for short amount of time but that tension then builds. So, if you did not blink for 5 minutes your eyes would become so dry/watery and stinging that when you were allowed to blink again you would blink uncontrollably and repeatedly to make up for the lack of blinking until your eyes felt better again. Yeah, that's what it's like to NOT tic.
4.) "Maybe if you disciplined your child more or if you weren't such an anxious parent then they wouldn't have Tourette's"
From Melissa:
"Tourette Snydrome is not something that can be controlled no matter what type of discipline is used. It's a genetic neurological disroder"
From Brynn, a mother of a child with Tourette's:
"I would say to them " do you know what TS is? Do you remember how painful it was to watch your child be in pain as an infant and not be able to do a think about it? I live that everyday with my child, and yes that makes me an anxious parent, but not about her tics or her future. You see, I have raised her to be strong and be proud of all of who she is. What makes me an anxious parent are closed minded people like you that she will undoubtedly encounter in her life. What makes me an axious parent are the hopes that she shows herself as a christian to undiciplined opinions and words like yours."
5. )"With your effort and attitude, I know you'll get rid of your tics one day."
From Charlotte, an adult living with Tourette's:
"Why would you think that? I'm almost 64 and probably the only time my face will stop moving will be when I'm in my coffin!"
6.) "I wish I had Tourette's too! Then I could go around swearing and saying anything I want to and I would never get in trouble!"
From Jenn, a mother of two children with Tourette's:
"This made me cry - just moved into our neighborhood.. the lady over at the church whose husband is the pastor said she wished she had Tourette syndrome to my son and I and then said because then she could take the lords name in vein. In that moment I was shocked. I smiled at her as if to say I cant believe you said that.. then I said I had to get going - thanks for the chat.. and we left. My son was so upset and wanted to know why I didn't say anything to her especially since I always say something but I looked at him and said there are some people that are not worth explaining to.."
From Lauren, an adult living with Tourette's:
"I have actually had that comment made to me by a man who had his Doctoral degree in Social Work, very educated. I explained to him that I was very hurt by what he said and i educated him about what it is like to have Tourette's and that it is not just a cussing disorder. It was a good learning opportunity for him."
7.) "You don't have Tourette's! You seen so normal. I've never even seen you tic."
From Darby, a mother of a child with Tourette's:
"I hear this all the time. Tourette's is so misunderstood even by medical professionals. My response would depend on the situation. Sometimes I don't have the time or energy to educate others and I just say, "well you don't see us much and how it impacts our lives day to day and 24/7." If I have time, I try to give them some insight and specifics. But, usually they still think I am making things up to excuse my kid's "behavior." They don't get it. And inevitably they want to know why I just don't make him stop. I recently had someone tell me I should duct tape his mouth shut. People can really be ignorant. I don't waste anymore time on these people. We try to surround ourselves with people who are kind and understanding. The rest of them have no place in our lives."
From Mandy, a mother of a child with Tourette's:
"Certain things make my sons tics act up, excitement, anxiety, etc. He doesn't tic all the time."
From Asher, someone living with Tourette's:
"I can assure you that my tics are very visible to me. They consistently provide adversity in my life, and thus, I can also assure you that I have Tourette Syndrome (And I was diagnosed)."
From Jen, a mother of two children with Tourette's:
"AH I get this all the time. The answer always depends on the person saying it. I usually say this - Yeah, my kids don't really tic around others. They try really hard to suppress them in front of strangers or people they know but are uncomfortable around. Take a look sometime at their youtube videos.. lots of tics on those! : ) Maybe you can look it up, its not uncommon for people to not notice. And yes they are normal, thanks"
From Kerri, a mother of a child with Tourette's:
"My son (13) tics constantly & people say this to me all of the time! I tell them they just don't know what tics are & that not all of them are screaming, in your face tics. I tell them he always tics, they just may not realize it. Once I describe the tics he is currently having, they usually say, "Oh, I've seen him do those! Those are tics?! I had no idea." I don't mind educating people when they say it out of a place of genuine ignorance & not stupidity (yes, there is a difference!). Otherwise I would respond with one of the above comments."
From Heather, a mother of a child with Tourette's:
"TS isn't always like Hollywood portrays. Often there is much more going on you can't see"
8.) "Everyone has "habits". If you have Tourette's then everyone does too."
From Heather, a mother of a child with Tourette's:
"Habits do not prevent you from doing ordinary things like riding a bike, wearing roller skates or ski boots. Habits do not make you lick your lips until they are puffy and sore. Habits do not prevent you from sitting in a chair. Habits do not make your eyes blink so hard and often you can't read."
9.) "Don't worry, I think I have Tourette's too half the time"
From Jenn, a mother of two children with Tourette's:
"Wow. What exactly is it that you do that would lead you to believe you actually have Tourette Syndrome? ( one of two things will happen.. they will either have the symptoms or they wont - if they do then help them and if they don't then be kind enough to lead them in a more appropriate disorder.. either with a medical name or like in my many circumstances a disorder called Stupidity"
10.) "You just need to exercise more, then you won't be so hyperactive."
From Victoria:
"If that were true, then why do so many professional athletes still have TS? Although exercise helps, it will not cure TS. Same with removing nitrates and other processed food triggers- it will help, but will not cure the underlying disease."
From Kerri, a mother of a 13 year old son with Tourette's:
"He (son, 13yo) is a runner & a swimmer. I'm sure he exercises more than you. It helps but does not make it go away."
From Jo, an adult living with Tourette's:
"I do two aerobics sessions a week plus a busy, on my feet job and I do voluntary work two mornings a week, am a single parent to two teenage boys, one with ADHD. I'd say I do my fair share of exercise...strangely I still have Tourette's. Go figure."
1.) "You're really pretty/ handsome for someone with Tourette's" or "You're too pretty/handsome to have Tourette's"
Yes. People actually say this. Or at least make comments like this online.
In responce to this, here are the words of a beautiful young woman named Megan who has Tourette's:
"Are you saying that people who have disabilities or neurological conditions are not supposed to be aesthetically pleasing or to have a certain beauty that fits in what society finds acceptable? This warped sense of beauty? What if your child has a disability and you tell them that they are too normal or beautiful to have a disability? Imagine how they'd feel? And you know what? I have Tourette's and I am gosh damn sexy, beautiful, confident, wonderful, amazing, compassionate, loving, caring, considerate, resilient, and strong-minded. Tourette's has made me become so much more compassionate towards other people. Tourette's has helped me learned cultural competency and enables me to connect with ANYONE at ANY TIME on a mental, emotional, and spiritual level. Now that's beautiful."
2.) "I have this eye twitch when I get stressed so I know exactly what you're going through."
From Jenn, a mother of two children with Tourette's:
"Really? all day every day for weeks months and years? wow. You may want to get that checked out (depending on how long they have it). If its not something serious then politely change the topic. Some people don't realize how they come across. My friends daughter says things like this ALL the time.. some days my daughter cries.. other days she will laugh."
3.) "Can't you just stop?"
From Kerri, a mother of a 13 year old son with Tourette's:
"I like to say to those people that if he (son, 13yo) could stop, he would. It bothers him a whole lot more than it will EVER bother you. It's a lot like a staring contest: when you keep yourself from blinking for an extended amount of time, once you give in & blink, your eyes burn & you blink a whole lot more to ease the burning in your eyes. Same with stopping/curbing his tics. And no, he won't stop."
From Jo, an adult living with Tourette's:
I often have a hard time getting people who do not have TS to understand why I can't 'just stop'. I liken it to not blinking. How long can you NOT blink for? Sometimes we have a certain degree of control over our tics, sometimes we have none and sometimes we can suppress for short amount of time but that tension then builds. So, if you did not blink for 5 minutes your eyes would become so dry/watery and stinging that when you were allowed to blink again you would blink uncontrollably and repeatedly to make up for the lack of blinking until your eyes felt better again. Yeah, that's what it's like to NOT tic.
4.) "Maybe if you disciplined your child more or if you weren't such an anxious parent then they wouldn't have Tourette's"
From Melissa:
"Tourette Snydrome is not something that can be controlled no matter what type of discipline is used. It's a genetic neurological disroder"
From Brynn, a mother of a child with Tourette's:
"I would say to them " do you know what TS is? Do you remember how painful it was to watch your child be in pain as an infant and not be able to do a think about it? I live that everyday with my child, and yes that makes me an anxious parent, but not about her tics or her future. You see, I have raised her to be strong and be proud of all of who she is. What makes me an anxious parent are closed minded people like you that she will undoubtedly encounter in her life. What makes me an axious parent are the hopes that she shows herself as a christian to undiciplined opinions and words like yours."
5. )"With your effort and attitude, I know you'll get rid of your tics one day."
From Charlotte, an adult living with Tourette's:
"Why would you think that? I'm almost 64 and probably the only time my face will stop moving will be when I'm in my coffin!"
6.) "I wish I had Tourette's too! Then I could go around swearing and saying anything I want to and I would never get in trouble!"
From Jenn, a mother of two children with Tourette's:
"This made me cry - just moved into our neighborhood.. the lady over at the church whose husband is the pastor said she wished she had Tourette syndrome to my son and I and then said because then she could take the lords name in vein. In that moment I was shocked. I smiled at her as if to say I cant believe you said that.. then I said I had to get going - thanks for the chat.. and we left. My son was so upset and wanted to know why I didn't say anything to her especially since I always say something but I looked at him and said there are some people that are not worth explaining to.."
From Lauren, an adult living with Tourette's:
"I have actually had that comment made to me by a man who had his Doctoral degree in Social Work, very educated. I explained to him that I was very hurt by what he said and i educated him about what it is like to have Tourette's and that it is not just a cussing disorder. It was a good learning opportunity for him."
7.) "You don't have Tourette's! You seen so normal. I've never even seen you tic."
From Darby, a mother of a child with Tourette's:
"I hear this all the time. Tourette's is so misunderstood even by medical professionals. My response would depend on the situation. Sometimes I don't have the time or energy to educate others and I just say, "well you don't see us much and how it impacts our lives day to day and 24/7." If I have time, I try to give them some insight and specifics. But, usually they still think I am making things up to excuse my kid's "behavior." They don't get it. And inevitably they want to know why I just don't make him stop. I recently had someone tell me I should duct tape his mouth shut. People can really be ignorant. I don't waste anymore time on these people. We try to surround ourselves with people who are kind and understanding. The rest of them have no place in our lives."
From Mandy, a mother of a child with Tourette's:
"Certain things make my sons tics act up, excitement, anxiety, etc. He doesn't tic all the time."
From Asher, someone living with Tourette's:
"I can assure you that my tics are very visible to me. They consistently provide adversity in my life, and thus, I can also assure you that I have Tourette Syndrome (And I was diagnosed)."
From Jen, a mother of two children with Tourette's:
"AH I get this all the time. The answer always depends on the person saying it. I usually say this - Yeah, my kids don't really tic around others. They try really hard to suppress them in front of strangers or people they know but are uncomfortable around. Take a look sometime at their youtube videos.. lots of tics on those! : ) Maybe you can look it up, its not uncommon for people to not notice. And yes they are normal, thanks"
From Kerri, a mother of a child with Tourette's:
"My son (13) tics constantly & people say this to me all of the time! I tell them they just don't know what tics are & that not all of them are screaming, in your face tics. I tell them he always tics, they just may not realize it. Once I describe the tics he is currently having, they usually say, "Oh, I've seen him do those! Those are tics?! I had no idea." I don't mind educating people when they say it out of a place of genuine ignorance & not stupidity (yes, there is a difference!). Otherwise I would respond with one of the above comments."
From Heather, a mother of a child with Tourette's:
"TS isn't always like Hollywood portrays. Often there is much more going on you can't see"
8.) "Everyone has "habits". If you have Tourette's then everyone does too."
From Heather, a mother of a child with Tourette's:
"Habits do not prevent you from doing ordinary things like riding a bike, wearing roller skates or ski boots. Habits do not make you lick your lips until they are puffy and sore. Habits do not prevent you from sitting in a chair. Habits do not make your eyes blink so hard and often you can't read."
9.) "Don't worry, I think I have Tourette's too half the time"
From Jenn, a mother of two children with Tourette's:
"Wow. What exactly is it that you do that would lead you to believe you actually have Tourette Syndrome? ( one of two things will happen.. they will either have the symptoms or they wont - if they do then help them and if they don't then be kind enough to lead them in a more appropriate disorder.. either with a medical name or like in my many circumstances a disorder called Stupidity"
10.) "You just need to exercise more, then you won't be so hyperactive."
From Victoria:
"If that were true, then why do so many professional athletes still have TS? Although exercise helps, it will not cure TS. Same with removing nitrates and other processed food triggers- it will help, but will not cure the underlying disease."
From Kerri, a mother of a 13 year old son with Tourette's:
"He (son, 13yo) is a runner & a swimmer. I'm sure he exercises more than you. It helps but does not make it go away."
From Jo, an adult living with Tourette's:
"I do two aerobics sessions a week plus a busy, on my feet job and I do voluntary work two mornings a week, am a single parent to two teenage boys, one with ADHD. I'd say I do my fair share of exercise...strangely I still have Tourette's. Go figure."
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