Strategies for Tics: Non-Medication Interventions

NOTE: Below is a list of various strategies that help me when my tics are occurring more frequently. These strategies are things that personally help me as a person living with Tourette's. They are wroth a try, but I can't guarantee these things will work for you or help your tics calm down. I can tell you these things help to decrease my tics at times (not all the time, and they are not foolproof) but overall every person is different and something that helps one person might not help another. If your tics are getting to a point where they are difficult to live with or to control, the first thing I would recommend is seeing a neurologist. Your neurologist, psychologist, or psychiatrist should be your first line in treatment and suggesting interventions.
I hope some of you find these suggestions helpful! Please let me know if you try to implement any of them and how they affect you!

Distraction/ Focused activities- 

       Whenever I'm ticcing a lot, distraction and focused activities can help my tics get back under my control. Talking or telling a story takes up a huge amount of brain power! Ever tried singing while also saying the ABC's backwards in your head? It's pretty much impossible because the amount of brain power it takes for your mouth to form words is taking up too much space in your brain. The brain has less of an ability to misfire (aka tic) if your talking, engaged in conversation, telling a story, etc. Also focused activities like dancing, drawing, video editing, or playing an instrument takes up just as much if not more brain power. So, when my tics get bad I try to focus myself on something that will take up a lot of brain power.

Note: For vocal tics specifically chewing gum or sucking of sugarless cough drops can help to distract the mouth from tics! 

Sensory Toys-

   Sensory toys seem to help my tics. For me the kinds of sensory toys that help the most are ones that provide both tactile input and auditory input. So for example, I have a sensory toy that's basically a long chain of plastic blocks all connected. When I move it around in my hands I get both tactile (touch) feedback and auditory (sound feedback) from the clicking noise it makes. I also have quite a few others that give this dual feedback such as a fish that makes a popping noise and a chain of small wooden blocks that make clicking noises as well. Not sure exactly why they help, but they help lessen the tic urges in my body when I play with them.

Here's the website where I got most of my sensory toys (its a site for autism sensory toys and I found it though my mom because she works with a lot of kids who have autism, but most of the items on the site work great for TS as well!): http://www.autismshop.com/games-playthings/games-playthings-fidgets-sensory-items/?sort_by=position&sort_order=asc

Here are a few of the sensory toys that I have and find helpful:

Tangle Relax toy :No auditory component, but great for tactile input
What Zit : tactile and auditory input (clicking sound when blocks hit)
Wacky Tracks  : great for both tactile and auditory input (this one is my favorite!)
Roller Fidget: great for tactile
Pop Animal: fantastic for both tactile and auditory
Colorfall: Great for those who might like more visual input

Sensory Soothers -
 
Milk/ Soothing Drink- Not sure why but drinking milk or another soothing drink when my tics are bad really helps me! Cold milk usually works best for me, but cold water to a lesser extent can help in a pinch. It really depends on the person though. For me I find the plane milk the most  soothing, but for something a little fancier, try this great little recipe!
    Vanilla Milk:
 
    - 2 cups 2% milk
    - 1 tablespoon agave nectar    - 1 teaspoon vanilla extract  
Place all ingredients together in a mug or pitcher and stir well. Then place the mug/ pitcher into the microwave to warm. Also it can make a nice frosty drink with a few ice cubes and a blender! 

Weighted Blanket- My weighted blanket really helps my tics calm down, especially for night time. The weight is helpful most nights, depending on my sensory needs that day. Some nights i'll really feel the need to have something heavy on me, other nights i'd rather not. I have to listen to my body that day and depending on how i'm feeling the weighted blanket can help A LOT! It calms my body down incredibly and helps me fall asleep faster. I ordered my blanket online though sensa calm, but you can also make them yourself them depending on your level of craftiness!

Where I got my weighted blanket: http://www.sensacalm.com 

DIY weighted blanket videos and articles:
https://www.youtube.com/watch?v=Qw_IzkB2Cz0
http://www.mamasmiles.com/sewing-tutorial-how-to-make-a-weighted-sensory-blanket/http://qualityplasticpellets.com/2013/01/04/a-warm-night-in-the-diy-guide-to-a-weighted-blanket/

Cold compress/ cold pack/ cold pillow pad- for me cold sensory input seems to help my tics, so cold compresses and a cold pillow pad I have both help. Here are some links to some items that are helpful if you find cold or warm compresses to soothe your tics as well.

Chillow - Memory foam cooling pillow pad, requires you to fill it with water, but i've had one before and it works well and is pretty inexpensive too. There are other products that are a bit more pricy but I think may work better to keep a cooler pillow.
Chilloh- Another brand of cooling pillow pad that's a bit more expensive but might work to keep the pillow colder than the chillow.
Therapearl - can be heated to be hot or hold and also can double as a tactile sensory toy! 

Changing the environment- 

For me, when i'm ticcing a lot it may be environment dependent. For example, I tend to tic a lot in classrooms, lectures, while sitting in an audience, when i'm in a quiet environment, a stressful environment, and also strangely enough while in the shower. So if i'm ticcing a lot, one of the first things I do is I assess the environment and ask myself, am I being triggered by something around me? Am I in an environment that would cause me to tic more? If so, and if I am able to, I try to change the environment.

For example, the other day I noticed that I started ticcing more and started to become uncomfortable because of this. I looked at the environment around me and realized that my tics may have been triggered because I was in a quieter and more enclosed environment. So I got up, walked outside in a more open and louder area, and my tics started to calm down. Later that day I was walking around a lot and started to get hot and tired, which started to make me tic more. I decided it was time for me to go inside and sit in the air conditioning which helped decrease my tics.

Also sometimes I start ticcing a lot, look around at my environment, and can't seem to find anything specifically that I can think of that would be triggering me. In this case, I get up and change the environment anyway because even though i'm not able to discern what seems to be making me tics worse, changing the environment will tend to help to some extent regardless, even if that means just getting up, walking around for a while, and then coming back.

Putting your body in a different position- 

This may just be unique to  me,  but something that helps me when i'm ticcing a lot is changing the position my body is in or putting my body in an "different" or "odd" position. So if my tics are bad while i'm laying in bed, if I put my pillow on the opposite side of the bed and lay backwards for a while this will help my tics. Or if I hang my head off of my bed so that i'm essentially upside down this will also help. Whatever I can do to get my body in a different position seems to help. I'm not sure why this helps but my best guess is that it gives my body different sensory cues and serves as a form of proprioceptive sensory input. I'm also not sure if it will work for anyone else, but it might be worth a try.

Also giving your body different sensory signals in general may be helpful! Some other ideas of giving your body different sensory signals than those when you're just sitting or standing are doing yoga, running, jogging, jumping rope, fast walking, swimming, playing a sport, dancing, swinging, yoyo-ing, or whatever other crazy (or not so crazy!) bodily activity you can think of to get your body active and engaged in movement!

Decreasing frustration/anxiety-

When i'm ticcing a lot, sometimes I get frustrated with myself and pretty anxious with the fact that i'm not able to control my body. Its pretty frustrating and anxiety provoking to not be able to stop yourself from doing something that's annoying, painful, and often times embarrassing. So sometimes with each tic i'm not able to control, I get more and more frustrated and anxious,  which in turn of corse makes me tic even more and it becomes a vicious cycle. I tic, I get frustrated and anxious, I tic more, I get even more frustrated and anxious, and then I tic much much more, and repeat. You can see how this might be a problem. 

Not many people know the emotional components that come with having TS. They see the tics, but what they don't see are the emotions that come with living in a body you can't always control. They don't see the anxiety, the embarrassment, and the frustration that comes with having Tourette's, but this side of TS is no less real and no less important to address than the tics themselves.

So whatever I can do to  decrease my frustration and stress level will help stop this vicious cycle and help to decrease my tics. This is another reason why distraction, focused activities, and calming sensory activities help to decrease tics. These activities help us take our mind off the frustration and anxiety that tics bring. Listening to music may also help.

Another thing that can help is talking to the rational side of your brain by using coping statements. I start out by telling the rational side of my brain "being frustrated and stressed will only make my tics worse"and giving myself self assuring and soothing statements such as "i'm just fine", "it's okay that i'm ticcing right now", and "this will soon pass, it always does". I give myself a little time to tell myself everything's okay, and then I move on to calming, focused, distracting activites to take my mind off the tics.

CBIT-

Cognitive Behavioral Intervention for Tics (CBIT) is a behavioral intervention for tics, it's non-pharmacitical, and is proven to be as affective or even in some cases more affective than mediation for tics. It doesn't work for everyone, and it's not a cure, but for some people it can significantly decrease the severity and frequency of tics. It worked very well for me, and I still use the strategies I learned in CBIT when I feel like I need to.

I still have tics of course, and I still have bad days, or bad weeks even, but overall my tics are less frequent and less severe than they were a year ago before I started CBIT. CBIT has worked better for me than any mediation has, and the best part is NO SIDE EFFECTS!

A lot of the behavioral interventions i've listed above are strategies I learned in CBIT. CBIT is not only about targeting tics with a competing response, but its also about learning how to manage your tics, finding strategies, and assessing your environment, your triggers, and finding various things you can alter in your environment to help your tics. The ideas of distraction/focused activities, changing the environment, and deceasing frustration and anxiety are all environmental components of CBIT that I have learned both on my own and with the help of my CBIT therapist. The competing response component of CBIT is important, but the environmental assessment is just as important as well!

You can read more about CBIT and watch videos on CBIT on the Tourette Syndrome association website here: http://www.tsa-usa.org/Medical/CBIT.html

Diagnosing A Child With Tourette Syndrome: What are Tics? How are Tics Different From Normal Childhood Behavior?

Cerian's Tics: What Do Tics Look Like? 

Here's a video of what to look out for when considering a diagnosis of Tourette's Syndrome or Tic Disorder. This is a video of Cerian! In the video you can see Cerian shrug his shoulders, stretch his mouth and nose, and blink in a repetitive manner. These are simple motor tics. You can also see him sniffing many times. This is a simple vocal tic.
Many children will occasionally shrug their shoulders or sniff. What makes these movements tics rather than regular movements and sounds that are typical for a child of this age?

The key question to ask when determining if something is a tic or a regular behavior is: is the movement or sound repetitive? In other words, does the movement or sound happen multiple times over the course of a day? Does it happen over and over? And does it look very similar each time the child does it?

You can see in the video that Cerian's mouth movements, sniffing, and shrugging all happen again and again over the course of the video. Each time he does it, you can also see that the movements happen in a very similar way and look very similar to the previous movements that he has just done. 

Tics also tend to be quick rather than sustained. They tend to  occur in bouts, where one tic occurs after the next for a period of time. There can be periods where the child displays no tics at all, or periods where the child displays many tics all in a row.  There tends to be no change in consciousness, awareness, or behavior while the child is having tics. If there is a change in your child's level of awareness, consciousness, or behavior during a period of facial movements or other types of movements, then you should immediately consult a doctor and mention this, as this could be a sign of seizure activity.  

If the tics last less than a year, the child may have a transient tic disorder, meaning that the tics will go away. In fact, it's pretty common for children to have tics in childhood that appear for a short period of time and then disappear. 

If your child's has both multiple motor tics and at least one vocal tic for more than a year, then your child might have a Tourette's Syndrome, a more chronic tic disorder. Still, the tics of Tourette's may fluctuate in frequency and severity over the course of childhood. Many children with tics grow out of their tics by their teen years. Other children do not grow out of their tics and may have tics in different degrees of severity over the course of their life. 

Remember: If you think your child may have tics or Tourette Syndrome, you should schedule an appointment with your pediatrician or with a pediatric neurologist to rule out the possibility of seizures or other movement disorders.

Presenting to your/your Child's Class About Tourette Syndrome

For those of you who have a child who is newly diagnosed or is thinking about presenting to his/her class about Tourette's for the first time, this is a good read for you! If your child's tics are noticeable to others, educating the class about it can only help! http://kidcompanions.com/tourette-syndrome-school-child-tics-tell-classmates/

I have done it both ways, choosing not to educate and choosing to educate and trust me, having my classmates know about my tics has made my life so much easier. My classmates have been nothing but accepting. After they know about my tics, they no longer think of me as the girl twitching and making noises randomly, they think of me as the girl who is smart, funny, brings up good discussion points about the reading, and oh yeah she happens to have Tourette's too :)

Seth's Story

Seth's Story 

Q:What is your name and how old are you? 
A: My name is Seth Tucker, I am 29 years old, and I live just outside Washington DC.

Q: How long have you had Tourette Syndrome? 
A: I've had Tourette's since I was 7 years old.

Q: What kinds of tics do you have?
A: My most common tics are my throat clearing and facial grimaces. I also have frequent arm/neck/leg movements, and a few tics that cause me to hit myself or bang my head into objects. Some tics come and go and they vary in frequency and severity.

Q: Do you have any associated conditions?
A: I have been diagnosed with OCD, ADHD, anxiety, auditory processing disorder and sensory processing issues.

Q:What is life like for you living with Tourette Syndrome?
A: While working I usually don't have an issue with my Tourette's. By using CBIT and medication I am able to generally suppress my tics. When I get home most of the tics explode out of me and I've broken furniture in the past. I've learned to take off my shirt and pants, wrap myself up tightly with a blanket and just let my tics go. It's much safer for me as I don't hurt myself as much.

Q: What advice can you give others who are newly diagnosed with Tourette Syndrome?
A: Learn to laugh and let the little things go. Life is too short and awesome to let something bother you for long,
especially if it's something you can't control.

Q: What is the hardest thing about living with Tourette Syndrome?
A: For me it's watching others suffer with it (which is why I got involved with the TSA). While I have a few extreme tics, for the most part it's the least challenging part of my day.

Q: What do you think other people should know about Tourette Syndrome?
A: The way we perceive things aren't always the way they are. If we think a kid is good we'll notice all the good things they do, if we think they're bad we'll notice all the bad things they do. By choosing to see someone with Tourette's as a person and not some strange thing or poor soul suffering with a disorder, you will see all the amazing qualities that person has (and hopefully they will too).

Q: What are your strengths and what do you like to do?
A: I love working with kids and helping them see the good in themselves. I work with kids who are too often told they can't or that they're stupid by those around them. I love it when they get to see just how special and amazing they really are.

Q: What are your goals in life?
A: I'm living my dream, I'm working to make the world a better place one kid at a time. I've managed to get my professional life in order and am currently pursuing my National Board Certification for Teaching, something that only 3% of teachers have been able to accomplish. I'd like to start putting my social life in order as its always been an area of weakness for me and I need to learn how to start thinking about myself for a change.

Martyna's Story

Martyna's Story 

Q:What is your name and how old are you? 
A: My name is Martyna, I'm 15 years old, and I'm from Poland. 

Q: How long have you had Tourette Syndrome? 
A: I was diagnosed with Tourette's about 2 years ago. 

Q: What kinds of tics do you have? 
A: When I was younger I had a lot of different tics like eye rolling but they weren't very noticeable. When I was 13 I started to shout and I didn't know what was happening to me. My parents were really sad and angry. Now, I'm taking a medicine that really works for me so my tics are a lot better. 

Q:What is life like for you living with Tourette Syndrome? 
A: Life with Tourette's is really hard. When I first started to have tics it is very difficult, but it got easier as time went on. 

Q: What's the hardest part about having Tourette's? 
A: I think the hardest part about having Tourette's is meeting new people. They don't know why I'm shouting and sometimes they are scared. It's hard going to the movies and my main problem is going to church! I can't stop ticcing in church. 

Q: What advice can you give others who are newly diagnosed with Tourette Syndrome?
A: Don't worry, just be happy! You must live the life! Dont worry about people who don't understand. Think positively! 

Q:What do you think other people should know about Tourette Syndrome?
A: Other people should know that our tics aren't our fault and they should accept us. 

Q:What are your strengths and what do you like to do? 
A: I really love reading books! My favorite genre is fantasy. I am interested in learning more of the English language and next year I'm going to be in a special English competition. 

Q: What are your goals in life?
A: When I grow up I want to be a doctor and help polish people who have Tourette Syndrome. I will be a doctor with my own experience with having Tourette's. I would like to say you more but I can't find enough words in English.

My Story! My life with Tourette Syndrome.

My Story: My life with Tourette Syndrome

(A picture of me ticcing at 3 years old)

Q:What is your name and how old are you?
A: My name is Ruthie, I'm 20 years old, and I'm a Junior in college.

Q: How long have you had Tourette Syndrome?
A: I've had Tourette Syndrome since I was 3 years old. I was misdiagnosed for a long time though and for that reason I wasn't officially diagnosed by a neurologist until I was 17.

Q: What kinds of tics do you have?
A: I've had to many types of tics over the years, but right now some of my tics are facial grimacing, blinking, rolling my eyes, head jerking, punching my arms outward, hitting objects around me with my hand, sniffing, coughing, and high pitched noises.

Q: Do you have any associated conditions?
A: I have OCD, anxiety, and sensory processing issues.

Q:What is life like for you living with Tourette Syndrome?
A: Living with Tourette's has it's challenges. I wake up every morning knowing that I will move through may day jerking my head, rolling my eyes, hitting , and making noises among many other things, but this is my normal. When it relly comes down to it , Tourette's has given me so much more than it has taken from me. It has given me an amazing community of people who I will never take for granted. I would have never met my amazing camp twitch and shout family, the people who I do research with, or my Tourette's Syndrome Association friends if I didn't have TS. Tourette's has also given me confidence. I don't mind explaining or answering questions and I love educating people about TS. In fact i'm going to be educating 200-400 medical school students about Tourette's in September! Having Tourette's is a unique experience and the opportunities that have come from having TS have enriched my life more than I would have ever known. Like one of the nurses from camp twitch and shout said "people with Tourettes are not the ones that are disabled in our society, it is the “normal” people that are handicapped in the depth and beauty of life."

Q: What advice can you give others who are newly diagnosed with Tourette Syndrome?
A: As a person with Tourette's, you can do anything that anyone else can do. Ever since I was little, I was told "you can do anything you set your mind to". I took that message to heart. Even though you have tics, you should never use the word "can't". You should never let your Tourette's be a reason you can't do something. You might have to do things a little differently sometimes, but you can still succeed and do everything you want to.

Q:What do you think other people should know about Tourette Syndrome?
A: You should treat people with Tourette's just like you would treat anyone else. Most of the time, I feel pretty darn normal, so that's how I want you to treat me. I go to classes, hang out with my friends, go out to eat, and live in the dorms just like every other college student. I might twitch a bit more along the way, but i'm just as smart, just as capable, and just as motivated as any other person. I won't let me tics get in my way or stop me from doing the things I love. A lot of the time, I forget I have Tourette's and I just go about my day like anyone else. When people treat me any differently it surprises me. I don't feel impaired in any way. I might be different, but everyone is different in one way or another.. being different is normal.

Q:What are your strengths and what do you like to do?
A: I am fascinated with neuroscience and am passionate about brain research. My college major is Philosophy-Neuroscience-Psychology (PNP) with a focus in Cognitive Neuroscience and I'm a research assistant in two labs at the medical school associated with my university. One of the labs I do research with is a lab that focuses on Tourette Syndrome and last year I conducted my first independent research study. My study focused on the sensory processing issues that many people with Tourette Syndrome have and I now have two research publications on this study. This year I'm going to continue to work towards more findings and publications.

Q:What are your goals in life?

A: Next year I'm going to be applying to PhD programs. I would love to get my PhD in either Clinical Psychology or Cognitive Neuroscience. My goal is to one day have my own lab that focuses on Tourette Syndrome research and to make a difference in the lives of others :) 

Success Story #1!! Katy's Life with Tourette's Syndrome

Success Story: Katy's Life with Tourette Syndrome

Q: What is your name and how old are you?
A: My name is Katy, I'm 17 years old (almost 18!) and I live in Wales in the UK.

Q: How long have you had Tourette Syndrome?
A:I was diagnosed with Tourettes 9 months ago after I suddenly started developing a throat clearing tic.

Q: What kinds of tics do you have?
A: My tics quickly developed to head jerking, clapping, tapping, coprolalia, copropraxia, echolalia, punching my chest, clicking my knuckles and facial grimaces. But I like to think of my signature tic as my squeak (my friends often call me guinea pig now because I squeak so much!)

Q: Do you have any associated conditions?
A: I also have anxiety, panic disorder, OCD and some issues with sensory processing.

Q: What is life like for you living with Tourette Syndrome?
A: Life has been pretty up and down with tourettes especially because I developed it so suddenly and at such a strange time in my life! I'd already become used to life as a teen without tics but then suddenly developing tourettes really turned my life upside down. People around me, like my friends and teachers had to be informed about everything and there have been times that I've felt like a burden because everyone has had to adjust to my tics.
I felt like I wanted to record with journey and show people what it's like to live with tourettes, so that's when I started my YouTube channel 'LetsTalkTics'. My channel has been such a help to me because I can talk about tourettes openly and it has helped me to come to terms with the fact that I might be living with tourettes for the rest of my life.

Q: What advice can you give others who are newly diagnosed with Tourette Syndrome?
A: The largest piece of advice that I can give to those who are newly diagnosed with tourettes is that being open about your tourettes is much easier than being closed about it and you'll end up gaining the best support if you talk to people about what you are going through.

Q: What is the hardest thing about living with Tourette Syndrome?
A: The hardest thing about living with tourettes for me is the swearing tics. I hate saying these horrible words in front of my friends and family and coming to terms with this has been really difficult and I'm still not very comfortable releasing my swearing tics in public.

Q: What do you think other people should know about Tourette Syndrome?
A: I think people need to know that tourettes is not just about tics. It runs so much deeper than that because tourettes can cause physical and emotional pain, tiredness and almost always comes with co-morbid conditions so it's not always just about the funny movements and sounds.

Q: What are your strengths and what do you like to do?
A: Despite having vocal tics, I absolutely love to compete in public speaking competitions. I always feel so confident and standing on the stage reminds me of my life before tourettes. But it also shows me that tourettes has not limited me in any way.

Q: .What are your goals in life?
A: I'm about to start my last year in school before moving off to university, hopefully to study psychology. I'd love to work in a rehabilitation centre or an inpatient care facility.

Advice About How To Handle When Your Child, Student, Or Friend's Tics Increase During Stressful or Exciting Times

We're approaching that time where school is coming to an end. For those of us in college we have about a month left, and for those of us who are younger we have about two or two and a half months left. The last month or two of school tends to be a rough time for us ticcers. The local and national TSA branches tend to yield a high volume of calls during the time for no other reason than tics increase during this time! 

There are a few clear reasons why tics increase during the last month or two of school. 

#1: Extra School Work. Teachers tend to assign more homework, essays, and tests during the last month or two of school to wrap up the school year and make sure all the material has been covered. This increases stress and anxiety, which of course increases tics 

#2: Transitions. A lot of kids/young adults with TS have trouble with transitions and the transition from the school year to summer is a big one! Life is transitioning from a very structured routine where you know what to expect every day to a very unstructured routine where suddenly you don't have to wake up at the same time every day, don't have homework, and don't have a set out plan for every day. This kind of transition and even the anticipation of the transition where you are moving from the known to the unknown, can be very stressful and usually increases tics. 

#3: Excitement! Even though the transition from school to summer time can increase stress, it can also increase excitement and excitement incenses tics as i'm sure most of you know. You or your child probably has something to look forward to during summer like a planned vacation, summer camp, family visiting, etc. and this excitement usually increases the tics. 

So with all of these things combined, it's not a surprise that ticcers have a challenging last month or two of the school year. Personally, I have seen my own tics increase a lot over the past week or so, considering I only have a month left in my sophomore year in college. 

Today my tics were especially bad and my day has been filled with involuntary squeals, squeaks, "NO's!", bangs, stomps. I am especially nervous about wrapping up my year long research project which I have to present a poster about at a research symposium, and I am especially excited about my second year as a counselor at camp twitch and shout this summer! 

At the lab at the medical school where I do my research, I was having a lot of high pitched humming and sqeaking tics today. Usually I don't do a lot of my tics in the lab because I'm usually so focused on my research that i'm doing or a conversation i'm having with those who I work with about the research. But today, I was doing a lot of my facial tics, head jerking tics, and high pitched humming and sqeaking tics. 
The post doctoral fellow I work with also has Tourette's and she is someone I admire so much. She's one of the coolest people I know and I always want to impress her and want her to like me. Sometimes I think she has no idea how much I admire her and look up to her. Her tics are more mild than mine, but I see them every now and then. I really appreciate our relationship and appreciate seeing someone who has TS who is so successful and confident about herself and what she does. I really appreciated today how normally she treated my tics. Although I don't tic around her nearly as much as I tic around my friends or in my classes, my tics today didn't phase her at all. She didn't even blink when I came in squeaking and humming today and I really appreciated that. She made me feel normal and like everything was okay even though I was having a rough time with my tics. 

So my advice is this. The best thing you can do for your child, your friend, or who ever you know in your life that has TS is don't draw attention to their increase in tics during this time period. Let them know you accept them and love them no matter if they are having a rough time and exhibiting more tics or not. Treat them like you always do. They are the same person even though they are having more tics and still want and need your support. Let them know in whatever way you can that you are there for them and that the fact they are ticcing more doesn't change how you feel about them and doesn't change their ability to do what they usually do, to be productive members of society, or to just be themselves. 

That was the best thing my post doc could do for me today or any day that I am having more tics. In her own way, she tells me this. Even though she doesn't tell me this verbally, she tells me this with her actions. She doesn't treat me any differently, doesn't look at me any different'y, doesn't even bat an eye or turn around when I squeak or make any type of noise. This is all I want really. To be treated like everyone else even on those days when I am ticcing a lot. 

Opening Up To Others Leads to Good Things!

As a college student I often wonder, how supportive and open is the college community I live in about disability, psychological disorders, and other struggles? Do people want to talk openly about challenges or struggles they face in their life and are simply looking for an opportunity to open up, or do people want to seem "normal" or like the "typical college student"?  There is no clear cut answer and everyone probably has different feelings about the subject, but I am starting to learn more.

A major learning experience for me happened on Sunday night in the laundry room in my dorm of all places! I often feel like I want to speak openly about my Tourette's, OCD, and other disorders and often do for that matter with close friends, but to what extent do others feel that way? Well, on Sunday night I went to do some laundry and found out the opinions of two others on this subject.

I was in the laundry room doing my laundry when a girl I had met freshman year came in to do laundry as well. I had met her my freshman year in a pre-orientation college program. She asked me how I was, I asked her how she was, and we started to talk about how poorly I was treated at student health services. She immediate connected with my story and began to share her experience with student health services with me. She told me about how she was seeking psychological help from student health services and how after 40 minutes of explaining her symptoms, struggles, and the fact that she needed help, the psychologist told her that at student health they were just regular psychologists and that they didn't know how to deal with her problem. This upset me very much!! After opening up to a stranger for the first time about her mental health, the psychologist had turned her away and offered her no other options or referrals. So we started talking more and we both started opening up to each other more and found out that we both have OCD! This girl is the first person I have met on campus who has OCD like me. She was so glad to hear that I have OCD too and we started sharing experiences about what it was like having OCD as a child, how our symptoms have changed and waxed and waned over the years, and what it's been like trying to get treatment.

We were both so glad to have someone else to talk to! I also told her about my Tourette's, panic attacks, and picking and turns out she also has panic attacks and picking is one of her major OCD problems just like me! I was so glad to meet another person who understands that it is so hard to stop picking your skin no matter how much you will yourself to try to stop or how much you want to stop. This is something that not many people understand because most people have complete control over their mind and body. Not being able to stop yourself from doing something seems so foreign to so many people.

Our conversation continued on in the laundry room for about another hour! We talked about everything and one thing that we agreed on is that we do want to have opportunities to talk about our struggles and not have to hide them and pretend like everything is fine when it's really not. We also agreed that talking about our struggles does not make us OCD or in my case Tourette's. We have OCD or struggle with OCD but we are not OCD itself. She kept expressing to me how much of a relief it was to be having this conversation and how much she was enjoying it! I expressed the same to her as well.

After about an hour of our conversation, a boy walked into the laundry room to do his laundry. We continued to talk and have our conversation even though he came in because we were just so deeply into the conversation that we didn't want to stop. I would have expected the guy to come in, quickly put his clothes in the wash, and then walk out to avoid the intense conversation or to feeling awkward, but to my surprise he stayed. He stood next to his laundry while we kept talking. After about 10 minutes, when we were back on the topic of Tourette's I said "Most people think that people with Tourette's swear all the time and don't know about the other tics, but it's actually just 10% of people with Tourette's who swear". The girl responded with "Oh I've actually never heard that. I've never had that perception that people with Tourette's just swear". I've found that there are some people who really don't have that perception which always is a good thing! Anyway at this point, the guy standing next to us took the opportunity to chime in. I think that is why he stayed, because he wanted to join the conversation. He said "Sorry that I was listening in on your conversation, but yes you're right. Most people do have that perception about Tourette's, but I know it's not true." After adding that bit, he felt comfortable to join the conversation! He started sharing about his own experiences with anxiety and depression, the medication he took for them, and the therapy and struggles he has been thorough.

The conversation continued on for another hour or two, past the time when our laundry was all done, but we just wanted to stay and keep talking and sharing. It was a great bonding experience and gave me even more of a feeling that I am not alone in my struggles. In addition, the girl said to me at one point something that made me very happy! Last year in my Pre-orientation when I had told her about my Tourette's she was inspired by me. She went home and told her mom: "I met this really cool girl at college who has Tourette's and who opened up about it to me, and I just think she's a really neat person and our conversation really touched me". This made me so happy to hear! And gives me even more hope that my OCD and Tourette's is something that I have, but not something that defines me. It is a part of me, and when I open up to people about it and talk with them about what it's like to have Tourette's, it's not so much of a statement about my Tourette's but instead about my personality and who I am as a person.

I made two new great connections with people in my dorm who have similar challenges in life that I do. We all had to come to an acceptance that we may have these conditions for the rest of our lives and reach a point at which we are okay with that. We all had to seek treatment, medication, and answers. We all have to make a decision about who we choose to share our challenges with and how to do so. It is amazing how many people around you struggle with the same things that you do, even if your diagnosis is not exactly the same and even if the others you know don't have any diagnoses at all. Everyone has struggles, everyone has to make a conscious decision of if they want to hide these struggles or if they want to talk about them openly.

My ability to talk about my Tourette's and OCD openly led to me finding another girl with OCD right in my dorm who is so sweet, friendly, and is just a great person over all and also finding a guy in my dorm who struggles with Anxiety and Depression as well. It lead to a fantastic heart-to-heart conversation which left me with a great feeling and two new connections. I invited the girl from the laundry room to come study with me too and she came to study with me and three of my other friends and we had a good time. Tonight I am going to a writing club meeting because she wants me to come with her and I am excited to see her again and go to the writing club!

Opening up about yourself and the more sensitive topics that you might initially stay away from creates friendships and opportunities. When you open up you will be surprised how many people also have been waiting to open up about things in their life too. Good things come out of it! Trust me!

TED Talk: The Game that Can Give you an Extra 10 Years of Life (AKA Post-traumatic growth)

I highly suggest that you watch this TED talk if you have TS and if you have ever gone though or are currently going though a rough time with it. It is titled "The game that can give you an extra 10 years of life" and it's all about helping you get though a rough patch in life by playing a mental game.

Several years ago she suffered a serious concussion, and she created a multiplayer game to get through it, opening it up to anyone to play. In “Superbetter,” players set a goal (health or wellness) and invite others to play with them--and to keep them on track. While most games, and most videogames, have traditionally been about winning, we are now seeing increasing collaboration and games played together to solve problems.

It also talks about something called post-traumatic growth. Here is a quote from the talk: "It seems that somehow a traumatic event can unlock our ability to lead a life with fewer regrets".

Just watch it, trust me!!! You will be able to better cope with any struggle in your life after watching this :)

http://www.ted.com/talks/jane_mcgonigal_the_game_that_can_give_you_10_extra_years_of_life.html

Early Warning Signs for the TS+ Child

This winter break I have spent some time thinking about why I wasn't diagnosed sooner, and why my mom did not see the early warning signs as warning signs as part of the larger picture for a TS+ child. For those of you who are unfamiliar with the term TS+, it stands for Tourette's Syndrome in combination with the co-morbid conditions that commonly come along with Tourette's. I myself have OCD, Generalized Anxiety Disorder, Sensory Processing Disorder, and Panic Attack Disorder (although I haven't had a major full fledged panic attack in about two years), and implsivity issues also known as disinhibition. Some other co-morbid disorders that can come along with TS are ADD, ADHD,  mood disorders such as bipolar disorder, Aspergers Syndrome, rage issues, and other disorders as well.

In this post, I will outline and summarize two of the main types of tics that are warning signs for TS+ in a younger child anywhere from the ages of 2 years old to a middle school aged child. It is important to remember that in order for the types of things I describe to be tics, that they must be repetitive in the sense that you will see your child doing these things over and over again throughout the week, month, or even day. 

1) One of the first classic warning signs for the TS+ child is a simple tic, usually in the face. Simple facial tics like eye blinking, slight facial grimacing, or slight facial twitching will usually be the first tic a child has. After a child's first simple tic, other tics may develop in the trunk, arms, and legs. A simple tic however, is not always the first tic for a child and each child with TS or TS+ will differ in the way they present with various symptoms. TS is a very unique disorder as a result of the fact that every case is different which includes the way the symptoms start. I think my first tic was a slight facial grimace, however it was so subtle that neither myself nor my parents can be 100% sure. I have seen videos and pictures of myself which make it look like this was my first tic which started when I was about 3-4 years old and it probably continued in the same way until a little after 1st or 2nd grade. I seem to find pictures of myself around this age all with a very similar positioning of my face which also makes me think this may have been my first tic. The tic looks like it was a slight facial grimace in some pictures but then looks like a much larger facial movement in other pictures. I really don't think my parents even noticed it at the time. They probably thought I was just a "twitchy" or "nervous" kid. Here are just some of those many pictures: 

2) For some kids, they have more complex tics as children and for some these more complex tics can even come before the more simple tics. It is a little less typical for a child to get complex tics before simple tics, but it can certainly happen. One type of complex tic that can be common in children is what I call a compulsion like tic. These tics appear to be more like compulsions but are tics none the less. Complex compulsion like tics are very common in children to show up at some point in childhood and more commonly show up after simple tics show up. Some examples of compulsion like tics that I had personally when I was younger are skipping, lip/skin picking, lip licking, lip biting, hair sucking, hand/finger smelling, sating off into space/doubling vision, grabbing at various parts of the body, putting hands down pants, and shirt or sleeve chewing. Some other possible compulsion like tics are hand/finger licking, stomping, and other types of complex body movements. It is important to remember that although these tics look more purposeful in nature than a something like a simple eye blink, they are tics none the less and the child has no more control over these tics than a simple tic. Asking your child to stop doing these kinds of tics will only make them worse. Here are some pictures of me doing more complex tics as a child:

Shirt chewing: 

Staring off/doubling vision:

Lip Picking: 

Lip Picking: 

Lip biting: 

Red/scabbed lips because of lip tics: 

Grabbing at neck: 

Implementing my Winter Strategies

So, I was hoping to put off having to implement my usual winter strategies for a little bit longer, but it's really getting cold outside where I live and my usual compulsion/ tic combo that gets bad in the winter is on a rampage. Every year in the winter since I was 4 or 5 years old, I've have a lot of issues with my lips and with picking.

Every winter is when my tics with my lips get really bad. Some of the things I do with my lips edge more towards the compulsion side of the spectrum and some edge more towards the tic side of the spectrum. In the winter time I bite skin off my lips, I lick my lips, I rub my hands against my lips, I rub my shirt sleeve against my lips, and I pick skin off my lips. I also pick on my skin on my ears more in the winter as well.

I'm not exactly sure why this particular combo of tics and compulsions gets so bad in the winter time, but its probably a combination of the fact that it's cold outside and I'm more stressed in the winter time because I have more homework and tests. So in the winter, I usually have to implement two important strategies to try keep my lips from constantly chapping and bleeding and to try keep the skin on my ears healthy.

The first strategy is that I try to keep the Bert's Bees chap-stick with peppermint on my lips almost 24/7. Bert's Bees chap-stick with peppermint is actually the only chap-stick that I am able to use, because all other chap-sticks really bother my Sensory Processing Disorder and are just intolerable. The Bert's Bees helps keep my lips moist, helps me keep my hands off my lips, and helps me keep from biting and licking my lips.

Sometimes though the tic/compulsion is too strong for the Bert's Bees to keep me from doing my lip tics/compulsions so that's where strategy number two comes in. Strategy number two is to keep at least two rubber bands on my wrist at all times. When the urge to pick, bite, lick, or rub my lips is too strong, and I notice myself starting to do these things, I pull the rubber band on my wrist back and snap it against my skin. It doesn't hurt too much, but over time it helps me associate the tic/compulsion with negative pain. Also the rubber bands on my wrist can help keep my hands busy if I fidget with the rubber bands. While this doesn't completely stop the tics/compulsions associated with my lips and with picking my skin, it does help reduce them. In the past though these strategies haven't been completely effective and many times during the winter i've given up with them and just stopped using them because of frustration that they don't help as much as I'd hoped.

So today is the first day this year that I've started to implement these strategies. Hopefully they will be more effective this year than they have been in the past. Wish me luck! And maybe if you have similar tics/compulsions to these that I just mentioned, you can try out these strategies and see if they help for you.

Advice for those who have children who have yet to be diagnosed with Tourette's

Today I got a message from a woman who needed some advice about TS and her son's situation. I thought I would post it on my blog because I know so many people can have similar concerns or can be in similar situations. Here is the question and also my response. I hope this can help all those dealing with a child who is yet to be diagnosed with TS but who knows diagnosis is soon to come.

Question: 

Hi, My son is just in the process of being diagnosed. We know he has it. He is 7 and has been having tics since he was 4. He also appears to have OCD and some sensory issues.

His pediatrician has told us that we'll watch things for now, and if the tics worsen, we'll see a psych re: treatment. I simply didn't think to ask at the time - what do I do until then? How do I reassure my son? Do I just ignore the tics and accept him as is, encourage him to suppress things???

Also, my biggest concern is school for next year. I am thinking of approaching the principal to discuss the most appropriate teacher to reduce my son's stress. Your thoughts would be very appreciated! Thank you!

My Answer:

Hi! Sorry that you are having to go through a difficult time with your son. I know how hard TS, OCD, and sensory issues can be as I have them all as well as Dysgraphia, Anxiety disorder, and a math calculation disorder.

I would actually recommend not to wait and watch things for now. If he has had both motor and vocal tics since he was four it's very likely that he has TS. I was forced to wait until high school for a diagnosis and it was miserable to wait. For most kids with tics like your son's, a diagnosis is inevitable and the longer you wait the worse the situation can get in my opinion. Early diagnosis leads to increased self-awareness of tics (which can lead to an improvement of tics later on as apposed to a worsening of tics in many cases), increased self-esteem, and most importantly increased knowledge of the disorder for both your son and those around your son like teachers, classmates, siblings, friends, and family.

Also I recommend to see a pediatric neurologist who specializes in movement disorders instead of a psych if possible. TS is a neurological disorder not a psychiatric disorder and many kids who see the wrong kind of professional can get misdiagnosed with something else when they really have TS.

Until you see a specialist (which you should do as soon as you can), encourage your son to just be himself! Let him know that its okay if he has to tic and let him know that you accept him for who he is! Do not encourage him to suppress. That is the absolute worst thing you can do. When a kid with TS is told to stop tics it only can make them worse both short term and long term. You have to let the tics run their course because truthfully no matter what you say they are going to run their course anyway. Ignoring the tics in the moment is the best policy and talking to him at a time when he is relaxed to let him know you accept and love him no matter what tics he has or how much he tics is best.

As far as school goes for next year, EDUCATE, EDUCATE, EDUCATE! Do approach your son's teachers/principal to let them know about his situation. If it becomes necessary, it can also be helpful to educate his class depending on how noticeable his tics are to those around him. The worst thing for a kid with TS is to be punished or singled out for something they cannot control and the best way to avoid this is to educate those around him, espeically those in his school. Also talk to the teachers about maybe providing him accommodations that would help with his stress level. It has been very helpful for me to have extended time on assessments and the accommodation to leave a space to go calm down and de-stress if my tics, anxiety, or OCD is bad. Sometimes I don't even use the accommodations, but just knowing they are there for me to use if I need them helps to decrease my stress level a lot.

Hope this has helped! Let me know how things turn out and let me know if you have any more questions or concerns.