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18: A “perfect” ending to a school year

One of the biggest internal struggles that parents of special needs children face is when…and how far…to “push” your child. Your goals are usually the same as any other child…to be happy, make friends, have others in their lives who love them and treat them well, get through school, and be as independent as possible. How you get them there can be the most complicated part.

One of my best friends is the most successful coach in college gymnastics. One of her many gifts is the ability to motivate and inspire…which doesn’t always mean holding your hand…it involves giving you a little kick in the pants at times. In going through our most difficult years with our son, she was one of the only people I talked to about all that was going on here at home. I was scared, and depressed much of the time…and frankly a lot more unsure of myself and down in the dumps than I had been before…thank you for hanging in there with me! I had young children, all my family lived at least 15 hours away, my husband was busy with a crazy job, and I was a NJ girl living in the south…I didn’t quite fit in. She became my family…my mentor, the voice of reason, and my best friend.

To sum up what I learned from all of my conversations with her…when you have a child that struggles, you can’t focus on the excuses. Your focus has to be on visualizing what they need to accomplish and get to work. For a child who has a health issue, it’s important to start early by educating them on their disorder, their treatment, and how to manage it…from appointments with Drs – to getting out and taking their own medication. The world is not going to be kind to them at times, and they are going to get knocked down…that’s just a part of life. What children need to learn is how to pick yourself up, dust yourself off, and keep moving forward.

It’s not as simple as it sounds…but it was exactly the direction we needed to go in. We started to visualize his future…that we wanted him to go to college, and that we wanted him to be independent.

My favorite Suzanne quote: “Losers make excuses…winners make adjustments”. It sounds harsh…remember this is a coach talking about competing against other teams…while this is not an athletic competition – the second part of this quote will start to make sense in just a bit.

What I’ve realized recently is that one of the most important life skills that we have been working on with our son for years now is one of “resilience”…a constant state of “making adjustments” to things that are thrown in his path. When a child is emotionally more fragile it gets complicated, but it’s not impossible. For a child that sees things differently…as with Asperger’s syndrome…theres a lot of work involved and it can be exhausting, but also rewarding and worth the investment.

College was going to be his fresh start. He saw it as a chance to reinvent himself and start over…something that I think every high school graduate dreams of. Then the reality of being a freshman sinks in…no one there to hold your hand, less structure, difficult classes, and no built in social network…the year of navigating the sea of life for the first time on your own. But one of the things I have told both my kids is that college is all about learning how to learn and problem solve…to face challenges and learn how to push through them so they can succeed on their own…to adjust. It’s all about figuring out how to manage life without us behind them. This independence feels really good to them when they first realize that they can do it, and it’s an important step in letting them go…a bitter-sweet one (that still doesn’t stop me from inserting my two cents in whenever they let me…one thing I have to still work on) .

This week is finals week for my kids…a time of stress and celebration – they made it through the school year. Looking back it was one of the most difficult years with my son’s health…complications, more aggressive treatments, several emergency visits, a ton of tests, changing doctors, weekly appointments with specialists, side effects…it was a tough one health-wise.

His academic and social life were not easy either as a result. He felt pretty bad almost every day for the past 8 months, which translated in to struggles in school, and not feeling up to tackling as much as he he would have liked to. But he pushed through…many kids would have dropped out facing all of the things he had to go through, but he never stopped for too long. When he was really sick he would lay low for a bit, or come home, but as soon as he felt up to it he would head back to school and continue on. His work ethic that he developed in high school really paid off.

To not get the grades that he got in high school…to struggle with a subject without the kind of support that he needed to succeed…were things that frustrated him this year, but he never gave up. He realized that it was still going to be difficult to make friends in college. He embraced the greek life that he never thought he’d be a part of, and participated in an improv club that he found…finally finding some places where he felt comfortable. He was working hard in school, but had also found time to have some fun.

We are starting to see the results of all the “pushing”…the hard work and support that we and many others have given him over the years. We would always be there if he fell too far, but we didn’t jump in to rescue him this year…we just kept pointing him back towards tapping in to the resources at the University that were there for him to use instead. Looking back and as nervous as I was…something inside me just knew that he needed to go through this – that he would learn to work it out.

In a recent conversation we had he said how difficult it was for him this year, but now he knows how to approach next year a little differently. His medical treatments are finally working for now, so he’s feeling much better each day. He had a very bumpy start to college life…but he made it through. He’s got goals and he’s focused. He knows that there are things that he will always struggle with, but now he has the experience and confidence that he will get through it. On paper it may not have been the perfect year, and I’m sure there will be more bumps in the future…but for us it was the perfect ending to his freshman year…he’s developing that resilience that he needs to get through life on his own…he did it 🙂 .





19: Should I let my child around other children with Tourette?

Our camp population mimics the overall population statistics – about 10% of our campers tend to have more significant symptoms. My feeling is that if the Tourette community can’t support and embrace these very misunderstood children with empathy and kindness…who will? I remember going to a National TSA meeting and talking to my 8 year old son about a vocal tic called coprolalia (involuntary utterance of inappropriate words) before we got there and watching him handle it with such compassion. We sometimes underestimate our children – they are very insightful, sensitive, and understand the disorder better than anyone…so they know how difficult it must be for those children. I still think my children’s greatest lesson was to learn how to embrace and accept others with challenges – to realize that they need the same things we need…friendships and acceptance…who could pick a better friend than one that truly gets it?

Having children all together in one place with a disorder can be very powerful – whether it’s Tourettes, seizures, arthritis, or diabetes – being with others like you helps normalize life a bit, and lets you know that you are not alone. It’s great to be in a place where everyone “gets” you. While this is definitely a huge part of the magic of camp, many spend too much time focusing on their disorder when they are together. Over the years we have come to learn that one of the most important things is to get the focus off of their disorder and their symptoms while they are with us (see article abstract at the end of this post). We want each of them to have the opportunity to just be a kid. We have learned through experience how important it is to have the right programming and support in place to minimize tics and maximize a successful experience. For some it many not be the tics, and the struggle may instead be one of the associated disorders such as anxiety, OCD, or social skills that may need the most understanding and support. .

At Camp Twitch & Shout our goal is to create an experience that focuses on challenging campers to try things they’ve never done before, create friendships, learn more about their strengths, find ways to navigate difficulties, create memories that will last a lifetime, and most of all have fun…that’s when Tourettes gets kicked to the curb. One powerful reality is that when our campers walk through the gates of camp – their Tourette doesn’t matter as much anymore because almost everyone has it! TS is no longer a focus or an excuse. This experience is a time to find out more about who they are as individuals and what they want in life. The successes they achieve with us can catapult them forward to face any challenge that heads their way. At the end, Camp Twitch & Shout is not to be left only as place where our children are understood…it is also to be where they began to gain confidence and hope for their future. 

So the reality is…having many children with TS together is amazing and wonderful…you still have to learn to do it right. Getting the focus off of the symptoms of TS and on to the positive experiences is the key…this is where we’re getting it right. We have engaged experts in the field of TS to help us plan, prepare, and train our staff. A few years ago Dr. Douglas Woods was key to helping us move forward in order to bring our children together in a healthy way. He flew down to be with our staff for an 8 hour workshop here in Georgia. Many of our staff traveled from as far as Missouri and Pennsylvania to be here for this training. While we don’t do therapy at camp, there are also additional supports if needed – if a child has already been through a therapy such as CBIT at home – we have staff who can support those children. Tourettes is a complicated disorder that may include anxiety, meltdowns, OCD, and social skills struggles. Creating a fun and engaging program with the back up Support Team our children may need is important…and where training our volunteers matters the most. This helps us achieve our goal to keep them moving forward embracing the positive experiences in front of them. Opportunities include swimming, archery, ropes courses, rock climbing, boating, creative programming, talent shows, dances, and a game of capture the flag that encompasses the entire camp (you have to see it to believe it)!

We believe strongly in what we are accomplishing at Camp Twitch and Shout. Over 130 volunteers applied for 75 positions this summer alone?! Our Leadership Team is putting together a very creative and fun programming week for us. Their experience and creativity will definitely enrich our program this summer! Each year gets better and better, and each summer we see our campers accomplishing more and more. I believe that our program has moved in to an amazing direction and continues to grow and learn more about our children and how to provide them with an experience of a lifetime…this summer is going to be very special!

Tourette syndrome can be a complicated disorder that requires a lot of understanding that may come from several different experiences. These experiences could be from the roller coaster ride of parenting a child with TS, living with TS, or from the interest of one whose life intersects with TS personally or professionally. I can honestly say that this coming summer includes the best group of young adults and professionals I’ve ever worked with. Their dedication and willingness to learn more about our children and meet to plan an amazing week was incredible! We hope that you choose to join us this summer – we love and want your children with TS to help us create memories of summer 2017 that will last a lifetime!

[ The following is an abstract from an article published from Camp Twitch and Shout surveys from the University of Georgia (because of copyright we are not able to publish the entire article) http://link.springer.com/article/10.1007/s10802-015-0105-9?no-access=true ]

Pink elephant By Troye Evers


One tic, two tic, three tic, four tic,

That’s the way my life is.

In a majority of articles, books and helpful pamphlets, you always find someones story that they are asked to “Stop doing that.”  I’ve heard it all my life; “Stop doing that,” “Why are you doing that,” or “Do you know you’re doing that?”  Yes, I know what I’m doing, why I’m doing it, and no, I can’t stop.  However, I will tell you this, the more you point it out, the more I will do it.  It’s like the old saying, “Don’t think about a pink elephant.”  What are you thinking about right now?  Let me guess, a pink elephant.  In fact, every time I say pink elephant, one is going to pop in your head.  I don’t even have to say to think about it, or don’t, I just have to say pink elephant.  The same goes for me with TS and their tics.

I have list of tics that seems never-ending and I have been for almost 30 years.  Still to this day, if someone say “calm down, you neck tic is getting bad,” my only thought is Great, thanks for pointing it out, now its just going to get worse.

I know it sounds odd but think about how odd we feel with the uncontrollable things that are going on in our body. Pink elephant.  As a kid, I always felt like there was a little puppet master hiding in my body telling different parts of my body to move with out my knowledge.  “Blink, shake your head, twitch your nose, clear you throat, grunt.”  I never gave this person permission to take control of parts of my body, but he is here, and I have come to terms with him taking over residence.

This power of suggestion is not limited to only tics.  It also accompanies my OCD, and my anxiety disorder.  “Don’t step on the cracks in the sidewalk,” now I’m just going to walk in the street, “Did you press the elevator button 3 times?”  Yes, I did, but now I have to do it three more times, and I might just take the stair up the six flights.  My favorite is, “Relax,” HELLO, I have anxiety disorder. I wish it were that easy.  Even though I took my med, I still have anxiety.  I have also had people suggest yoga and no, yoga is not going to help me.  Have you ever tried downward facing dog while shaking your head back and forth, it’s a little scary.  Plus, with my OCD’s and germaphobia, there’s no way I’m sitting on the floor where a dozen other people have sweated out their DNA.

I have found over the year that whether I’m having pink elephant moment (Don’t think of it) or just a regular TS moment, I just go with it.  I don’t find excuses, or find myself apologizing for what uncontrollable motion I might be doing.  If I have to tic, then I tic.  My friends and family don’t make an issue of it; in fact, they don’t even acknowledge it or make an issue of it.  The conversation continues without a hiccup, unless my old hiccup tic decides to make an appearance.  As for my anxiety and OCD, I have learned to take a time out.  I can feel things getting to the boiling point and I have to keep in mind to walk away and take a break.  Go sit on the sofa and watch 30 minutes of mindless TV, take the dogs for a nice long walk, etc.  I know what “I” need to do, but that’s not always the solution.  If someone else is around me or perhaps part of the cause of the anxiety, I need to walk away from them, and I hope they walk away from me.  The last thing I need at that moment is someone else telling me to calm down, or even suggesting taking a time out.  All this does, is build to the already boiling anxiety.  For myself, in most cases, if I walk away from whatever situation or activity that maybe causing the stress, I am back to normal, or close to it within 5-10 minutes.  (Thanks ADD)

With all these triggers to the power of suggestion, I’m beginning to think the puppeteer that has taken over residence in my body has oppositional defiant disorder.  He never want to hear suggestions from anyone else during these times of need, especially when I know what ever is suggested is the right thing to do and coming from someone who cares for me. I know in these times that I need to take a time out, but I don’t need you telling me.

A suggestion of a “Time out” can be a valued tool for any person with TS as long as it is discussed before the situation, and it is not suggested that “You need at time out.” The fact is, don’t we all need a time out.  Besides doing this for my own well-being, I have done this in other situations with children with TS at camp, schools, and TS events.  Separate them from the cause of anxiety. “This situation is making my anxiety worse, which is making my tics worse so I’m going to walk away and do something else until I have calmed down.  We are going to take a time out.”

Pink elephant (don’t think about it)


17: The social stuff

One night on a recent vacation, I met a couple of other mothers and I was asked what kind of work I did. I told them about volunteering with Camp Twitch and Shout and working with Camp Twin Lakes in the summer…which I tend to babble on about these programs frequently. As I described what type of programs are held at CTL, one of the moms opened up about her daughter being diagnosed with high functioning Asperger’s at the age of 18. She described how after high school her daughter had lost touch with all of her friends – I think she is in her early 20s now. She felt that her daughter had alienated any of the friends she did have because she has a habit of saying whatever comes to her mind – no filters…appropriate or inappropriate, sensitive or insensitive…her honesty and openness are never a challenge.

What I saw on this mothers face was a lot of pain and sadness…even though her family was terrific with her daughter…she had no friends.

Of course being a great 3am thinker…I don’t think I was very reassuring at the time. In trying to reassure her, I had opened up that my son was diagnosed with high functioning asperger’s also around the age of 10. My son has a few diagnoses…this is one of them.

I described an event that happened at home that makes us all smile when we think of it – this happened right around the time of his diagnosis. We were running around like our usual crazy selves getting ready to go somewhere. I was barking out my mommy orders before leaving. I asked my son to get in the shower and at least wash his hair before we left. A few minutes later he walks in to our room…fully clothed and completely soaked…he just looked at us and said, “I think I forgot to do something first”…yes son…getting undressed before you get in to the shower might be a good idea?! But here it was…all we had asked him to do was wash his hair? My husband and I both looked at each other and just giggled…oh my goodness.

I know that getting a diagnosis makes it real, and it can be a tough pill to swallow. But having a diagnosis can open the doors to making things better…even if you don’t have a formal diagnosis, it can point you towards an understanding that can help move your child forward towards having a healthier perspective about their peers and others, better communication, and eventually becoming a more independent and productive member of society.

I described to this mom how much progress our son has made by knowing about his diagnosis, and learning how to communicate with him more effectively. How his big sister has been a tremendous influence in his life. How pushing him to do things outside of his comfort zone many times is helping him reach that independence, and to developing a social network outside of our home.

What I didn’t get to say to her was…don’t give up…the great thing about Asperger’s is with proper treatment for any underlying disorders, along with coaching and guidance…they can learn! What I see in my son is he is a rule follower…he just does not instinctually know the rules?

Sounds simple? Well…far from it, but it’s fascinating and rewarding. We’re not always sure of what rule needs to be taught or explained? We are not always sure what problem needs to be addressed until it’s in front of us…so we are always a little off guard.

There are some basics that we started with including making meals, laundry, hygiene, dressing, etc… But then there are the social rules that are a lot more complicated like friends, bullying, rejection, girls, or why someone might not want to hear a dissortation on robotics or pokemon. He has always been a really sweet, sensitive, smart, and interesting boy…usually getting along in conversation with adults much easier than his peers.

His senior year in high school he took a drama class that was an extremely positive experience. Having our kids try activities that are social and scripted can be fantastic…they are smart and creative. At the end of the year he had a small part in a series of one act plays…it was a 3 minute act that he wrote and performed on stage. He never really had any fear of being on stage, so that didn’t surprise me, but what he wrote and performed brought me to tears. He wouldn’t tell me what it was…I didn’t know what the act was about, or that it was a solo…but this is the best example I have of not giving up on these kids – they are the best 🙂 .

There is a heckler at the beginning of the following video…but his classmates stared him down and it didn’t interfere. Also he wrote this after having received news that his crohn’s disease had worsened, and it was inevitable that he would have to start receiving infusions. He simply said to us…I can’t catch a break can I?

Here’s a link to his performance:


16: Beyond the diagnosis…

It has been a beautiful warm day in Georgia, and I’m back at Camp Twin Lakes starting to get ready for the season…I can feel now that summer is just around the corner 🙂 . My summer job is working as the Medical Liaison for Camp Twin Lakes to help support the medical programs for the camps that come to the CTL Will-A-Way site. Today was a family day for one of the local camps to help introduce the children and families to the facility.

The organization that visited today serves children with many different disorders…from cerebral palsy and down syndrome, to autism…they have a very diverse population. Watching all of the different children interact and play with each other is amazing. Towards the end of the day the Director gave the parents the opportunity to sit together and share their stories with each other…it was heartwarming.

One of the mom’s shared that being a part of this program has taken so much of the stress off of their family as well as their relationships at home. She talked about how wonderful her child is , but how stressful it is when others can’t see beyond his difficulties – at school and out in the community. Sometimes it’s hard to put on that shield that is necessary to survive others perceptions of your child, your parenting, and your life.

What became clear was how important it was for them to feel connected to the people that work with their children. They appreciate people who are willing to look beyond the diagnosis and find that unique child underneath.

Both of these organizations do an amazing job of training and supporting their staff that consists mostly of college students. Watching these young adults help these children climb the rock wall, sail down the zip line, go boating on the lake, and fish…just brings a smile to your face.

What many people don’t realize is how much thought and planning goes in to these fun activities for the children. It’s not just about having fun…which is still a really important part of it…but they make sure that they have appropriate activities that challenge them and broaden their experiences. Quality after school programs and camps should be creating “intentional” programming for their special needs children and adults. When the core staff is trained and well prepared…the support staff has the confidence to work with the disorders they are presented with.

Besides the creation of an amazing support network for these families, the staff develops a deeper understanding and appreciation for the children. Some of these college students will be heading in to careers such as special education, physical therapy, occupational therapy, and medicine. These experiences impact their lives and shape the way they will approach their careers. While the news on TV only shows us the bad stuff…I see really great things happening with our younger generation when it comes to service and empathy. My daughter has been working with both of these organizations for a year now…and it has changed her life.

Within the walls of our homes, we know and experience the joys and struggles that come with our children. Having others love and appreciate them for who they are…not what they have…is comforting. To have our children encouraged and challenged just like other kids brings us joy. Thank you so much to all of the students and young adults who spend their time lifting our children up by looking beyond the diagnosis…in doing so they lift us all up. Also to the Camp Twin Lakes staff who have been an incredible support and partner to our camp…thank you from the bottom of our hearts.


15: Send my child to a Tourette camp?

Last year I attended the National TSA Conference held in DC. It was nice to see old faces and meet new ones. During the conference I spent one of the days attending the Newly Diagnosed Seminar that typically occurs the day before the main event. I am always interested in hearing about anything new, and what parents of newly diagnosed children are being told. One mother raised her hand and asked a question that went something like this…

“We haven’t really talked much to our daughter about her having Tourette Syndrome. I’m not sure how much to tell her, or focus on the Tourette’s. I am not sure if we should have her around other children with Tourette…would you recommend sending her to a Tourette camp? He said no…he would rather see our kids at regular camps instead…”

My heart hit the floor…right outside the door of the conference room sat about 30 teenagers with TS that had just spent the last few days together with the TSA’s Youth Ambassador Program…we could hear them laughing, talking, and giggling. They were happy and having fun. This program empowered them to embrace their disorder, be comfortable in their own bodies, and advocate for themselves. I know this first hand because my son has been a Youth Ambassador for the past 7 years. The speaker from the seminar and I had a quick chat after the talk and he apologized.

To me her question seemed more about being comfortable and accepting the diagnosis. Should they be embarrassed by it? What do we tell people we know when so much of this disorder is misunderstood? Do you tell family and friends about it? Should we embrace it or hide it? Will my child get worse if I subject her to other people with TS? Will our lives be more normal if we just don’t talk about it?

Our adults with TS explain to me that sometimes they’ll mimic other tics for a bit…but that they go away. They also describe that tics are always changing anyway. As we all eventually learn, the disorder also goes beyond the tics for many of our individuals, and can be very complex. The kids explain to me that being with others who have TS makes them more comfortable in their own bodies…some for the very first time. Some tic more when they are stressed…they may also tic more because they are excited, comfortable, and happy. Our parent & camper survey from last summer showed that a many of the children’s tics actually got better after camp?!  We also found that our young campers view their self-competence as much better than how the parents saw their children…interesting. Being around others with the same disorder is powerful…they automatically belong somewhere…many  of them for the first time…their disorder becomes a non-issue and they start to explore and learn more about who they are as individuals.

Having typical, regular, or “normal” childhood experience is a great goal! Honestly…Camp Twitch & Shout is not about Tourette. It’s about challenging everyone in a safe environment, developing confidence and independence, working through their anxieties, learning new things, making new friends, and most of all having fun! What I see are kids that are happy and having a great time. Much of their time at home focuses on how to fix all the things that are wrong…this is a  time to find all of the things that are right…their strengths, their gifts, talents, and what great kids they are underneath it all! Camp can be the catapult to moving beyond their diagnosis – opening up the endless possibilities that our children can experience and accomplish.

What a Tourette camp provides is a camping experience with the support and understanding of the complexities of the disorder. It provides the kind of support that many of these children need…whether it is about their tics, OCD, ADD, anxiety, or social skill difficulties. While a regular camp may struggle to understand them…we get them. The most crippling problem for many children can be social isolation. These children make friends, show off their strengths and talents and step out of their comfort zone. Many children return looking forward to the one week all year that they are totally understood. The children who are returning campers will help those around them.

In one week I see the impact camp has on the lives of these children…and not just the campers…the impact on everyone working with these children is tremendous. Each year we have an amazing  group of Volunteers that use their own money to get here to spend the week with our children…some from other countries! These are young adults who take this experience and bring it back to their work, their lives, and their communities.

One of volunteers from last summer, Nora Miller, is a 4th grade teacher. I recently had a conversation with her about this and she sent me her story to pass on:

Hello families!

My name is Nora Miller, I’m a 4th grade teacher and love it. I also live with Tourette syndrome. My whole life has been a roller coaster of sorts…ups and downs, no real direction along with lots of anger. I realized this past summer after attending Camp Twitch and Shout just how much I had been suppressing my tics. I had only ticced in front of my family, and even then would find myself suppressing it. My family members were the main ones to experience the fall-out of my anger from the suppression. Wow, am I lucky to have them in my life!

When I saw a chance to volunteer at camp and be with others who have the same condition as myself, I was both excited and nervous. You see I’ve only been to a TS camp once as a camper when I was in 6th grade. Everything then was so new to me. I wasn’t completely myself and didn’t give in to the full experience that I could have had. At that time, I went to a school with teachers and students who didn’t understand why I would do the things I did. It was’t their fault, I was partly to blame because I was so scared to explain it. Therefore my fear led me to start suppressing my tics.

I didn’t realize it at the time, but by doing that I was releasing anger in its place. Forgive my rambling…it will all make sense soon. So attending camp last summer was a new experience for a 34 year old who never really felt like herself. I’ve always accepted that I have TS, ad I have no clue what it would be like to live without it. But, I do know that I wasn’t being my true self either.

When I got to camp I was apprehensive and shy, which really took me back to my 6th grade self. I was nervous that I might pick up a tic and not be able to get rid of it. When I was younger I used to grind my shoulder blades together so badly that I had bruises up and down my back. My fear wanted to take over…but then I met the kids I was going to work with and everything went away. As I started to adjust, I slowly realized how much I was missing by not allowing myself to tic in front of others. This sense of acceptance swept over me and I was finally letting go. The more I ticced…the less angry I was, and the more fun I had. I can honestly say I haven’t had that much fun in a long time. My campers inspired me to be myself. I don’t know if they’ll ever truly know how much that means to me. I think in life we worry what others think so badly that we hinder ourselves from enjoying what life has to offer. I was lucky enough to spend a week with people who understood me and who I felt knew me…even though we just met.

I understand that some worry about the aspect of picking up others tics – and believe me I did too. What I can offer you is that anything is possible in life. But what is not always possible is the opportunity to surround yourself with so many of the same individuals who can provide you with the most amazing support system you could ever imagine. Family is key to me, and now I’m so proud and happy to know that I have another family that understands me just as well. Please consider this once in a lifetime opportunity for your loved ones with TS!


Nora Miller, Camp Twitch and Shout Volunteer





Fourteen: Home

HOME Phillip Phillips

“Hold on, to me as we go
As we roll down this unfamiliar road
And although this wave (wave) is stringing us along
Just know you’re not alone
Cause I’m gonna make this place your home

Settle down, it’ll all be clear
Don’t pay no mind to the demons
They fill you with fear
The trouble it might drag you down
You get lost, you can always be found

Just know you’re not alone
Cause I’m gonna make this place your home”
On my way home from DC today, I heard this song and it spoke to my heart. My 17 yr old son Elijah and I went to the National Tourette Syndrome Conference to volunteer as counselors at the day camp for the kids attending the conference.
Elijah and I had made another trip to DC in 2011 when he attended Youth Ambassador training. The two trips were completely different; in 2011 we were both terrified with this new diagnosis. I took a scared little boy into this training in hopes he could learn more, make some friends, and gain some confidence to stand up for himself and others. Elijah had been bullied in middle school, he had been thrown out of events, and libraries, he was yelled at nearly everywhere he went all because of symptoms of this neurological disorder that he could not control.
Youth Ambassador training was the first time I had been around a group of kids with TS. I was so relieved to sit in a room full of people and not worry about what someone was going to say to my kid for making so much noise. I felt at HOME with the other families.
All of the children made noise! And they were all smart and beautiful and articulate and full of passion. They all had suffered because of their bodies’ betrayal to make noises and movements they could not control. They had also suffered by the reactions of others. However, they weren’t bitter; they simply wanted to make a difference! That’s where I first fell completely in love with children with TS and unofficially adopted every single one of them as my own!
We both left DC in 2011 with an understanding that it wasn’t just about helping Elijah it was our responsibility to advocate for everyone with Tourette Syndrome, especially the children.
The educational presentations started, Elijah gained confidence, he started helping the newly diagnosed younger kids, he stood up for them and for himself. He became a seasoned camper at Camp Twitch and Shout where he has gone every summer since 2010. That’s where he built solid friendships and grew stronger.
Fast forward to DC 2014, there was not a scared little boy along on this trip instead I took a strong confident young man with a heart full of compassion for the younger kids. We were part of a group that took 21 kids with TS sightseeing around DC. One of our campers with Coprolalia visited the monuments in DC screaming the F word followed by a significant racial slur that starts with N. Needless to say the situation was intense at times. The experienced adults in the group were doing our best to educate everyone around us while keeping our eyes on 21 kids with TS. In the middle of the chaos I had the privilege of watching my son protect and advocate for this child. With calmness and maturity far beyond his years he was explaining TS to the angry crowd, while calming the child, and physically assisting him as the anxiety and the tics by this point were hindering his ability to walk. Elijah protected another child, just as he had been protected by so many along this unfamiliar road. The journey became complete right before my eyes, on the steps of the Lincoln Memorial. The scared little boy that went with me to DC in 2011 is now a man and there is no longer any fear within him.
Friends and terrified newly diagnosed kids and families, just know you are not alone. Hold on to those who have traveled this unfamiliar road. Settle down it will all be clear. Don’t pay no mind to the demons
They fill you with fear. Just know you are not alone. You are home now.

Cindy Haynie, RN

Ten: Munchausens?…nope just our new normal

To every parent that has faced the scrutiny or judgement that they are seeking attention for some crazy reason by getting a diagnosis like Tourette syndrome…hang in there. While Munchausen’s by proxy is a serious problem (and I’m sure there is a case somewhere related to TS), any parent who loves their child, wants them to be more comfortable, wants them to succeed, and is striving to make life a better place for them…is seeking answers and a diagnosis for the right reasons.

The complexities of the disorder are confusing to the medical professionals…so it is understandable that our communities, family, and friends may be confused also…but it doesn’t make it easier to feel judged. Someone might say that they have known a person with Tourette syndrome before and that it did not look like that…and they are probably right. With the range of types of tics, waxing and waning, tic suppression, and just the natural course of TS – it makes sense. Tourette syndrome’s physical symptoms, along with any possible co-morbidities associated with it are truly on a “spectrum” (thank you Mary & Annetta for this great word to describe it). Although there are similarities…few cases are exactly alike.

With TS, the diagnosis usually comes anywhere between the ages of 5 and 18. Unless you are looking for it because of genetic reasons…it comes as a bit of a shock. You have a child whose life seems to be progressing normally, probably with some difficulties, but then they develop the most confusing, and sometimes frightening symptoms called tics. Whatever your thoughts had been about the health of your child up until now becomes a little uncertain. You start to look at the future with concern. The questions start mounting, and the search for the answers begins.

Identifying the difficulties and struggles that your child is experiencing will help provide an explanation to help you move forward. Once you have this explanation, you can put a plan in motion to enable your child to navigate their challenges toward a better life. I hope I do not come across as insensitive by using the word “explanation” instead of “excuse”…but I think it’s important to stay in a positive direction. As parents we need to keep away from using their struggles as an excuse…it may take some time to work out the issues, and many of their struggles will need to be supported. Heading in a negative direction and fostering learned helplessness in your child can be a barrier that is very hard to break down in the future. Our goal is to have them become as independent and successful as possible with whatever challenges come their way. You can accomplish this by involving them in creating their goals, involving them in their care, and problem solving. Including them in the process as early as possible can help foster their understanding and success in navigating the complexities of this disorder as they grow.

In many cases this will be a long process…and there can be a lot of explaining to do…so hang in there. We all want some sort of normalcy for our children. Just like other children with chronic illnesses, we need to adjust and adapt our lives. When receiving the diagnosis, we need to embrace that this is our new “normal”…we’re just heading down a different path than we expected. The goal may be the same, but how we get there may be a little bit different.

*Here’s some information about Learned Helplessness: http://psychology.about.com/od/lindex/f/earned-helplessness.htm

* If you have not heard of Munchausen syndrome, or Munchausen by Proxy here’s link:http://en.wikipedia.org/wiki/MĂĽnchausen_syndrome

Nine: It took a camp…

It was getting toward the end of his 6th grade year, and although we had made lots of progress he was still extremely dependent on us. We began to have some confidence in pushing him a little more, and started to look in to activities for the coming summer. After several unsuccessful attempts at sleep away camps, going away overnight still felt like a very distant possibility. I knew in my gut that we had to work a little harder at creating some independence, but I still did not trust my complicated child with many people.

I came across a camp that is based in North Carolina called S.O.A.R.. It was described as a special needs camp that focused on creating successes for children with ADD/ADHD…a very small group with a low camper to counselor ratio…so I picked up the phone and gave them a call. After a few conversations with them and many discussions with my husband, we decided to sign him up for an 18 day outdoor adventure type of camp in Wyoming. I could not believe we were doing this…I didn’t trust people a few miles away never the less half way across the country. The group he would be in was to include about 7 or 8 campers and 4 staff members total. Something about this just felt right. They seemed qualified, prepared, and willing to take him in to their program.

So the summer between his 6th and 7th grade years, I flew with him out to Wyoming. We were able to spend a couple of days in Jackson Hole before the camp started. I finally left him at camp, but stayed nearby for another day just in case…typically there was always a reason to stay nearby. After a day of no calls from the camp to come retrieve my son – I flew back home. There was silence for the entire 18 days…no calls…no pictures…no letters. I was on pins and needles the entire time. Even though my goal was to help create some independence…we were pretty connected and this is close to the top of the list of the hardest things I have ever done.

Fast-forward 18 days…After he was put on the plane in Wyoming to come back home, I received my debriefing phone call from the staff member. I hadn’t heard anything up until then, so I was expecting to hear that everything was ok. She started by saying that after I left he was fine for a few hours, but then it began…he refused to participate, growled and hid under the table at mealtime, had meltdowns when he got frustrated…so here we go again…was this ever going to get better? I asked her why they didn’t call me, and how did they handle it? She said that she knew he would get through it, and just stayed calm. She kept telling him that she knew he wanted to behave, and that he was a good kid. She described his need for the time to adjust, for lots of reassurance, and patience.

He finally broke down after a few days, came over to her, and just sobbed. He told her that he was scared and that he did not know how to make friends. She reassured him that he was in the perfect place because that is exactly what she could help him with. It was all he needed to hear, and he began to trust her. They went ahead and set some goals for the rest of the trip, including the ones for the activities that he wanted to do. As he started to participate, they just moved forward from there. He made a few friends, went camping, horseback riding and fly fishing throughout the rest of his time there. He became an active participant in the activities, learned lots of exciting new skills, and received lots of praise for the efforts he was making. Now I was the one sobbing…he had made it. By the end of our conversation she made a statement to me that he was the most transformed child in the group…this really lifted me up.

I sat in the airport for a couple of hours waiting for him and trying to absorb all that I had just heard. They knew how difficult it was for me to let him go, they knew how much I needed to trust someone, and I knew then that I could never have done what they did for him…I was his safety net and would never let him fall like that…but that’s exactly what happened. He fell in a safe place that did not reject him or judge him for his behaviors and anxieties. This experience changed his and all of our lives…it was the beginning of many positive new goals and hopes for his future.

He got off the plane and I could see it. He was so proud of himself, and incredibly happy… yet still glad to be home. We never really talked about the first few days of that camping experience…there were too many positives to even go back and start looking at the struggles. Upon returning to 7th grade that Fall everyone noticed the difference…it felt really good. There were still bumps in the road ahead…but that’s how we looked at them now…just bumps. I feel that his successes that followed over the next couple of years were a direct result of that summer camp experience.

Who are these strangers that we are giving our children up to? They are future teachers, social workers, therapists, professionals, and parents. These volunteers want to work with our children for a very good reason…they want to learn. I truly feel that camp counselors take their experience to heart and become more sensitive and empathetic to children with all kinds of struggles. There are interviews, background checks, and reference checks for all of our volunteers, as well as mandatory training. Our counselor to camper ratio is very good…with no more than 10 campers and no less than 4 counselors in each cabin group. Many of our volunteers will encounter other children like ours in their professional lives and out in their communities. Being a counselor requires them to think about the needs of others first, and their empathy and positive attitude will be a direct result of their camping experience. Allowing our children to have a growing experience…bumps and all…benefits everyone involved. For some campers it’s the first opportunity to gain the confidence that they can take care of themselves and succeed without us around. I can tell you that watching your child gain confidence and independence is extremely heartwarming and rewarding.

I know first hand that policies of no phone calls, no electronics, and little communication during the week can be hard on parents. Be reassured that the staff and volunteers are busy putting all of their focus and energy in to creating an amazing thoughtful experience for these children. It’s a lot of work during the week, and for some it takes all year long to develop a week that goes way too fast! The intention of camp goes beyond having fun…a lot of thought and planning goes in to creating and supporting positive challenges for the campers. Camp Twin Lakes is a huge part of helping us create the successes for both our campers and volunteers at Camp Twitch and Shout, and we value their partnership tremendously. After years of struggles…it took a camp to change the course of my son’s life, and a lot of trust in a group of dedicated strangers.


Eight: We need sleep…

Talking to parents of younger children with TS brings back a flood of memories. I think about all of the things that we went through and worried about that are now off my radar screen. Seeing them struggle can be one of the most gut wrenching experiences you will ever feel. You worry about their health, their emotional health, and what the future will bring. Underneath you know that this child is smart, sensitive, and has a good soul. But, it can be overwhelming and confusing at the times when we can’t see beyond end of our noses.

With TS it is best to just deal with what is presently in front of you, but with a goal of what you hope to accomplish. Some issues you will have little control of, and many you can help make better. With whatever struggle they are facing, try and look at what it might be like without the struggle – this will help guide your plan. If your goal is for them to be independent, then at times you will have to let go and work on creating that independence. Your child will ALWAYS need you…just not for the day to day tasks that they eventually will need to accomplish on their own. Autonomy and independence is a good goal!

One of the earliest struggles for us was sleep…or lack of. We had one simple goal…sleep. Many nights I would sit on the floor of my son’s room and read for an hour or so, and hold his hand until he fell asleep. I have a good friend that told me that I was crazy, and that it was not helping him in any way…she was right…I just didn’t know what else to do. The typical strategies didn’t work, and on top of that I had the additional sadness of listening to him have so many fears and worries at night. Many parents eventually end up doing the bedroom shuffle, or with the kids in the bed with them.

What I came to understand later is that most people with TS struggle at night. Gillian stated in Rick Fowler’s documentary “Inside Tourette Syndrome”, that sometimes at night TS can be at it’s loudest, and sleep can be extremely difficult to accomplish. Adequate sleep is an important aspect of our health, and emotional health. Benadryl works for some, but can lead to morning hangovers and hype some children up instead of calming down. When they are really struggling melatonin can be helpful and is safe short term and occasionally. Melatonin just helps them fall asleep faster and is shorter acting. It is given right before sleep (within 30 minutes is best). I have heard of a few children with TS who have been diagnosed with Sleep Apnea also so please check with your pediatrician if this seems like an ongoing chronic issue.

It is first helpful try to identify what is going on first. In Rick’s documentary he talks about the “intrusive thoughts” that interrupt him like a break in a radio signal. They can sabotage your focus during the day, but can really let loose at night. There can be the cyclical worrying that goes with OCD, or just general anxiety. Try to talk about this with your child and hear what they are experiencing. When you understand…you can start to be a support and help. Your goal is to have them become more successful at developing self-soothing habits. But, like with anything Tourette, it may not be 100%.  Over time, changes will come and go with different stages of growth, or additional stressors in their lives. Some approaches to sleep issues can be worked out with a therapist, adding (or adjusting) medication for anxiety/OCD, or just being creative and finding some strategies with your child. Involving them in the process will help them begin to learn that they can develop coping skills on their own. Also, keep in touch with your medical professional about this issue if needed.

Here are some of the things that we tried at home and worked at times:

* I loved reading to my son, so even though people may not always have the time to create this ritual…looking back I still would have done it. But, here’s where I would do it differently…I would read to him somewhere other than in his bedroom. Find a comfy chair or place that you can meet nightly to read at. I would also not do it every night and develop some nights off when you don’t read. This will help them develop some flexibility and creativity in finding their own back up plan. Of course it’s great to guide them with suggestions.

* He loved to read to himself, but sometimes he was too antsy, so we used books on tape for a little while. Books on tape can be a great help for children who struggle with reading, young children, or ones that are ticcing a lot before sleep. Again it may help to listen to them somewhere else besides their bedroom. He would read all kinds of chapter books, but had the problem of not being able to stop and put them down. He actually discovered some different types of books that worked really well for him. He developed a love of funny poems (Silverstein or Prelutsky), or comic books. Superhero comics were great, but our favorite were the larger comic books of Calvin and Hobbs, Garfield, Foxtrot, Farside, or the Simpsons. He described them as helping him get rid of all those bad thoughts that were in his head…they would replace the bad with good and funny thoughts…and finally get some rest. He liked to describe himself as being Calvin 🙂 .

* You can try a relaxation tape to listen to at night, or some nice relaxing music in their room. My husband loved putting a playlist together for both of my children. Many stores have displays with lots of Zen-type CDs to listen to – my son loved pushing the buttons to hear them. Another thought is using white noise generators, soothing music, or sounds of nature. There are several relaxation CDs for children available including: “I Can Relax! A Relaxation CD for Children” by Donna Pincus, “Indigo Dreams” and “Indigo Ocean Dreams” by Lori Lite, and “Relaxation and Self Regulation Techniques for Children and Teens” by Mary Karapetian Alvord. There is also an adult version by Lori Lite called “Indigo Dreams: Adult Relaxation-Guided Meditation”.

“Sleep Hygiene” can also be an important component, along with the relaxation techniques. These are the things you do, and the habits you form to create a better environment for sleep. There is a link listed below to explain more about it.

Recognizing causes of sleeping difficulties, creating a handful of strategies, techniques, and habits so that you have some options and flexibility are important. Working with a therapist or healthcare professional, or just getting creative, will help produce a healthier morning start to your child’s day. It is also important that your child feel independent and have successes. We want to give them confidence to branch out and try new things, develop the skill to problem solve, and get to know themselves a little better. After using multiple strategies, my son eventually found his own ways to help himself fall asleep. I wasn’t needed anymore (a mixed emotion), but I finally felt some normalcy after years of working at it…he grew up…and we all got some sleep 🙂 .

There is some information on the CDC website about sleep at http://www.cdc.gov/features/sleep/ .

Also, I also found a great basic outline about “sleep hygiene” from the Seattle Children’s Hospital that I liked at: http://webcache.googleusercontent.com/search?q=cache:qNckd1MqJPMJ:www.seattlechildrens.org/pdf/PE1066.pdf+&cd=1&hl=en&ct=clnk&gl=us&client=safari



Seven: Butting in can be ok

Since the arrival of children in our lives, we have never lived near family or relatives. They have always been a days drive, or a plane trip away. So, for all our years with children it’s pretty much been just the four of us. My daughter is the oldest by 2 1/2 years. When my son was born, he became her new built-in playmate. She included my son in everything…tea parties, dress up, watching videos, playing games, or just running around in the yard. She insisted that he participate in everything she came up with for them to do…and he just happily followed along.

As he got older and his anxieties were starting surface a little more, there were days that I just couldn’t push him to do things for fear of stressing him out. He had such strong reactions to everything. I put a lot of energy in to trying to create a stress-free environment…I was getting good at avoiding conflict. Whether it be his frustrations, explosions, or meltdowns…I just couldn’t handle it. Trying something new, shifting gears in our schedule, or transitioning from one activity to another were all struggles. I couldn’t figure out where to be supportive, or when to challenge him.

When my son entered 6th grade, my daughter was in the 8th grade at the same middle school. Still having difficulty with fine motor skills, it was hard for him to button things or tie his shoes. I sent him off to school with elastic waist pants, slip on shoes, and a rolling backpack. I thought I had helped by getting him some nice collared shirts to wear over the waist band. I also felt that I was doing great when I found some decent slip on shoes…moving a step beyond velcro. During his first semester there, my daughter gave me a lot of grief. She would roll her eyes and say “Mom…not cool”…and of course I told her to butt out.

She decided her first task was to teach him to tie his shoes again. This was a big struggle for me, and I had just given up.  But, she pushed and succeeded…so it was on to lace up sneakers…mission accomplished.

Over the Holiday break she thought of a present to get him, and asked to go to the store. When we arrived, she picked out a nice regular backpack…which was her next mission…and of course I again told her not to push the issue and butt out again…but this was what she wanted. Before returning to school after the break, she helped him transition his belongings into his new one and off he went. I didn’t want to call attention to it, so I didn’t ask anything about it at first. After about a week of not hearing any complaining, I finally asked him, “did anyone notice your new backpack?”. He answered, “duh…everyone”.

She was on a roll, so during the spring semester her next goal was to transition him to wearing blue jeans. I was finally learning…and this time I was not against the idea. She helped him pick them out…it was time to ditch the elastic waist jeans and the sweat pants. Again…she was right and he transitioned a lot smoother than I could have ever imagined. Throughout 6th grade she had successfully increased his ability to fit in.

After his first semester of college, he was a little frustrated that he was not meeting people as easily as he would like to. He is very much an introvert…but introverts need friends too. Making new friends is harder for him, and his school buddies that he has had since elementary school weren’t there to help. My daughter pledged a sorority this past year and was having such a great experience that she wanted him to have the same. She carefully asked lots of questions about a Fraternity that she thought he might like. She made sure that partying was not a factor, and that hazing was not a requirement. She thought it would be a good match and that they had a lot of the same interests that he did…so she gave them his contact information. Being in a Fraternity was not something he would have ever considered, and when they first contacted him he said no. He was furious at his sister for giving them his name. But, they didn’t take no at first, and asked him to come by again. We talked him in to going over and meeting them. When he finally went over…he felt right at home and loved it. He has since thanked his sister, gotten out of his dorm room a little more, and now feels a part of something at his school.

We accept and love our children unconditionally for who they are. My daughter saw something more, the need for him to succeed and fit in socially during those years. Still in survival mode, I was just focused on wanting him to be happy, decreasing his stress level, and helping him with the struggles he was having academically…I still saw him as being fragile.

To this day their interests, activities, and lives are still very different. There are many times where he still accuses her of being bossy, and not understanding him. There were also times where her stubbornness surfaced. He had spent all of high school trying to get her to play the video games that he enjoyed without success. After her first semester at college, she came home and was able to beat him in one of his own video games. His response to her was, “all these years we could have been playing something I liked, and you go away to college and come home good at it…not fair?!”

There are times when we need the help of others to see things that we don’t, or to help us push forward when we can’t. So don’t dismiss suggestions of creating some normalcy in their lives. The transitions he made during that year encouraged us to push him a little more. My son to this day is a self-professed nerd, and proud of it…and we are proud of him too. He is smart, funny, sensitive, and loving. Nerds rule in our home…just now with a little more style. I still need to be reminded to let him do things himself…but the reminders usually are coming from him. Looking back over those years, it was nice to have some help within our own home…it was ok for her to butt in.


Six: Cracks in the pavement

It took us awhile to understand the tremendous impact that the co-morbid (or associated) disorders can have on a person with TS. It makes sense…if an individual is worried, anxious, depressed, obsessing, failing in school, isolated without friends, or having sensory issues…it will affect how their tics are expressed. A possible list of associated issues may include:

* Obsessive Compulsive Disorder (OCD)    * Anxiety    * Depression    * ADD/ADHD    * Sensory issues    * Executive Dysfunction    * Social Skills Deficits    * Learning disabilities or struggles

Any one of the disorders listed above can be a significant weakness. If you have more than one…the struggle can be much greater. I like analogies…so let’s think of a person’s weakness or struggle as a crack in the pavement of a road. When pressure is put on these cracks…they get wider, deeper, and larger… like watching the pot holes appear after the winter weather has exerted it’s stress on the road. The crack may be small and there for a long time, but until enough pressure is put on this weakness…you may not even know it’s there. An individual may have found a way to accommodate it, or even cover it up…our kids are smart. My son’s attention issues were not apparent until middle school. Another child that I know was able to hold it together until Freshman year in high school, and then it all fell apart. So being aware of the potential common problems will help you navigate them a little better if they start to appear.

It is possible for individuals with Tourette syndrome to just have tics, and not the other issues that are common with the diagnosis. But I still think it’s good to familiarize yourself with the co-morbidities when seeking help or treatment for a child who is exhibiting symptoms of TS. Many times if you address these underlying issues properly, the result may be a decrease in the physical symptoms. I mentioned in an earlier post…even though TS is physical in nature, it is important to look at the internal and external environments, and the effect they may be having on how the tics are expressed.

A good psycho-educational evaluation can become a valuable tool. A thorough interview and proper testing will help guide you, your medical professionals, and the schools to the specific areas that may need to be addressed. The first visit for this type of an evaluation will be an intake of information about your child. This comprehensive history will help determine what type of testing will be done during their next visit.

*If you have started to journal about your child prior to the visit, this is where it will definitely come in handy. A parent’s insights and observations will help the professionals who will be doing the testing. The following is an example of some types of observations you might have that would help:

A list of moods, behaviors, rituals, repetitive habits, obsessions, worries, friendships, food issues, tics, relationships, organization or lack of, academic progress or struggles, handwriting, reaction to certain clothing materials or sensory difficulties with noise or touch, movements, self injurious behaviors, hair pulling, skin picking, noises, sleep disturbances, sleep walking, bed wetting, fears, physical discomfort like abdominal pain or difficulty breathing, headaches, poor hygiene, lack of coordination, do they have trouble tying shoes or dressing themselves, hear voices, suicidal thoughts or gestures, etc…You can also look back at the list of possible tics linked near the bottom of the post called “In the beginning”.

*Remember to also bring a list of strengths with you such as the activities that they are participating in, successes in school, awards, friendships, and relationships. Do they play an instrument or have a hobby? This type of testing should also confirm and expose your child’s gifts as well.

The results…well, this can be the overwhelming part. You will be handed a stack of papers with observations and findings, along with an explanation of all of the tests that were performed. We left with all of this wonderful new information and the physician said, “do you have any questions?”. I think sometimes they forget that although this is routine for them…it’s like learning a new language for us. Over the next week we started accumulating a lot of questions, so a return visit really helped us out. If you can set it up ahead of time – ask to schedule a follow up visit after you have absorbed all of this information. This can be either with the person who did the evaluation, or with the physician that you will be working with. If you have not decided on a treating physician yet, don’t be afraid to tell them that you may have questions, and how to best get them answered. This can be done by setting up a follow up appointment, or a phone call in a week or so. You will need a little time to go over it, and then the opportunity to go over all of your questions. The results will be the beginning of a plan to move forward…prioritizing and addressing your child’s unique needs.

Whether it is trying to fill in the cracks, or creating an alternate route…discovering your child’s strengths and weakness will be a valuable tool for their future. Many of the struggles can be improved, supported, or accommodated when you understand them. The opportunity to also look at your child’s abilities and gifts will also help create an environment that will set them up for success. All this will help you move forward with a better map, where the goal is to help smooth the road out a little for your child.



Five: I have permission…

I am going to interrupt all the Tourette talk right here for a VERY good reason. For those of you that have more than one child, and especially if that child does not appear to have any difficulties at the moment…this is for you.

During the height of the craziness, I started talking to a counselor myself…it was time to put my oxygen mask on.  On my first visit, I went on and on about my son and all that we were going through.  She stopped me and asked “do you have another child”? I said yes, I have a daughter about 2 years older than my son.  She asked me about the things that I do with her, and what kind of things she needed from me.  I went on to say how wonderful, and smart, and pretty she was. That she had many friends and didn’t really need me right now, but my son did.  I grew up in a family with 5 children, where private time and attention from our hard working parents was stretched thin.  They were amazing parents and did the best they could…but we were a big family. I told her that I didn’t feel at times like I got a lot of attention growing up, and that I was probably better for it. I felt that it was important to feel independent and not be needy. My husband was picking up my slack with her, and they had become a great daddy-daughter team. I was even more insightful when I told her something my son said to me not long before our visit. He had said, “what a lucky family we are mommy, I have you and she has daddy”…that said volumes.

She stopped me and said that I turned out ok in spite of being a part of a big family, not because of it.  A lightbulb went off in my head…every child needs their mom in some way…why did I feel like she didn’t need me…or that I didn’t need her? She explained how sibling relationships grow stronger when parents show interest and concern to everyone and help each of them feel loved and valued. Without this, they may grow up not understanding each other. The child who is not getting the attention may eventually resent the one who is. It made me think about my own sibling relationship struggles, and how important it was to me that my children grow up closer and support each other in the future. She said the key to accomplishing this was to spend time with each of them. Time…oh my goodness…that was the last thing I had right now…but she was right. That’s when she said “I give you permission to take time out to show your daughter that you love her and are concerned about her well being also”. It was the best permission slip I had ever gotten. This statement helped me realize how important both my children were to me.

My first thought was to remember the years before my son was born, when my husband was working long hours, and it was just the two of us…mommy and daughter. She’s all grown up now. Yesterday we had a mommy-daughter day at her college that reminded me of this time in our lives. I know everyone says this…but it is very true…enjoy every moment, because they are out of the house before you know it. The time has come when I don’t know everything anymore, and she is sailing through life without me…as hard as it is for me…it’s the way it’s supposed to be. But in reconnecting with her during the high school years, I don’t feel like I missed out on as much as I could have. I will forever be thankful to that therapist from the bottom of my heart. I love my children equally, and although I have not been a perfect parent, I feel fortunate to have taken the time out to do the best I could.

With Tourette syndrome comes lots of stress that can result in strained relationships. It can be with your spouse, children, family, and even your best friends. Many marriages suffer through these difficult years. For me it became all consuming at times, and I barely had the emotional reserve for anyone else around me. All this strain will also put your emotional health at risk, leaving everyone on a sinking ship. Keep in touch with your physician, know the signs of depression, seek treatment if needed, and don’t feel bad or ashamed – it’s a lot to handle. I know this can seem impossible, but you have permission to take time out of your quest to find all the answers for your struggling child to stop and take care of yourself. You have permission to give your love and attention to your friends, spouse, significant other, and your other children too 🙂 .

National Institute of Mental Health: What is Depression?  http://www.nimh.nih.gov/health/publications/depression/index.shtml

A nice article about “How to handle your depression, and your child’s special needs”: http://www.dfwchild.com/Thrive/features/118/How-to-Handle-Your-Depression-and-Your-Childs-Special-Needs

Four: Looking under the umbrella

The psycho-educational evaluation we had done over the summer went really well, but everything was still overwhelming.  The doctor had just mentioned the possibility of Tourette syndrome at this point, so we continued to look for other possible answers. The school did a good job of embracing our new concerns, and their counselor at the time was understanding and willing to help. So for right now, this environment was good.

But I did what every good caring parent given this type of news does…headed to the internet! This can be one of the most overwhelming things we can do to ourselves. But what else could these symptoms mean? In my internet search, I came up with more information on sensory integration disorder, PANDAS, or anything else that I could find that wasn’t Tourette syndrome. I continued to think that this could just be a manifestation of his anxiety. I got the advice, the articles, the information…and of course the confusion?!  I finally stopped with the internet searching, and decided to meet with a human being instead to help sort things out.

Instead of going to our Pediatrician or to a Pediatric Neurologist, we headed to a Psychiatrist who was recommended to us. He seemed kind and confident, and that he knew what to do. Even though we are both in the medical profession, this was new territory for us and not our field of expertise.  We left his office with five (yes 5) prescriptions to fill on the way home to start fixing all of his problems.  He had told us that he knew Tourette syndrome, and that these all made sense and were a great combination that he had tried before and worked well. The next week our child went from periods of lethargy, to moments of intense anger. He had bouts of frustration before, but not like this.

We returned to this physician who then told us that we had not given the medication enough time, and that we needed to start therapy for his anger. This included separate therapy sessions to help us work on our parenting issue…because of course some of this has to be our fault.  We started our therapy immediately.  The therapist worked with our son on managing his anger.  Then he wanted the therapist to meet with my husband and I separately, because now I guess he thought there might be an issue with our marriage? Our son ended up running out of his session, my husband was able to get through his, and then I ended up losing my temper because all the therapist wanted to talk about was our life in the bedroom, and nothing about our child…? During my appointment the therapist was actually lying on the couch in the office with his feet up on it…while I was sitting in the chair…it was creepy to say the least. I was fairly new to the south and I don’t think he was expecting the NJ girl reaction that surfaced…he sat up pretty quick, and those were our last sessions with the therapist.

Within the next week or so my son started hallucinating. He wouldn’t leave my side because of all the bad things that he was convinced were going to happen…that was it – we were done. We started the search for a new physician, a confirmation of a diagnosis, and helped our son get off of all the prescribed meds that were given to him.  He came back to his wiggly, typically stressed, but sensitive self within a few weeks. It was time to start with someone else from scratch…NOTE: Do not stop or withdraw medications without a physician’s guidance, this can be dangerous – you can always go back to your pediatrician for help. Also NOTE: If a physician gives your child 5 prescriptions on the first visit…run.

Lessons learned…

If you are presented with the task of choosing a physician, I would have done it differently and finally did.  We ended up making the right choice the second time around.

We eventually got a diagnosis of TS confirmed by a pediatric neurologist. She gave us clonidine for his tics, but he was exhausted all the time, and falling asleep in class. So this was the next prescription we decided to discontinue. His tics were not his most significant problem at the time, but we were still in the “fixing it all” mode. Finally we started looking at what we realized was his most important issues, including a lot of anxiety. So we asked our pediatrician for a list of three pediatric psychiatrists in our area that she would recommend.  There are very few clinics that specialize in Tourette syndrome around the country. We knew that the travel and expense of working with someone far away can be another cause of stress on a young child…missed school days, and the need to take more time off to return if things are not working out well with treatment. Telemedicine will help resolve some of these problems soon – but having a physician close by that worked well with us was extremely helpful.

Instead of subjecting our son to the interview process, we made appointments to meet the doctors without him.  Insurance paid for one of the visits, but the rest was out of our pockets.  An option other than planning a full hour appointment was to schedule a 30 minute visit, which was $75 instead of $150. The half hour ended up being plenty of time to find out who we were most comfortable with. I really liked that we didn’t involve our son which may have caused him any additional stress at this point. This expense was well worth the investment, and the physician we chose to work with is still available to us today.

When walking in to a physician’s office, there is a ton of pressure on parents to get the information about their young child right.  The physician may rely heavily on the information that you give them during the appointment. The issues with TS can be complex and confusing to both parents and medical professionals. That’s why I mention starting with a journal…take the time to write down all of the issues, symptoms, concerns, and dates of onset if possible before your visit. You don’t have to have the answers (to all of us internet gurus), just the observations and questions.

If you go in to the medical professional’s office with a long laundry list of issues…you will lose them.  Take the time to review your journal with your spouse, significant other, or good friend. This will help you look at what is going on and rank the issues from most concerning to the least concerning. You might end up only getting to the top 2 or 3 during your doctor’s visit. Include your child in the process to see how they feel, what is most important to them, along with the issues that they see as the most difficult.  Starting the dialogue and communication with your child, even when they are young, will be the key to creating a successful approach to understanding their unique strengths and weaknesses. It will help guide you to the best treatments, and if needed medication.

There is a lot of information out there describing what to expect from working with a psychiatrist or physician, but not a ton about how to interview one.  You might come up with some additional questions that might be helpful to others and are welcome to share them in the comment section after this post. It is important to come up with a list of questions that you are most comfortable with. Here are a few sample questions for interviewing a physician to help get you started:

1. What is your understanding of Tourette syndrome?  Since this is a possibility, you want to make sure that they are able to describe the diagnosis well, along with the other possible co-morbid (associated) disorders that may go with it.

2. How do you go about deciding what issues are most important with this child? Remember that it is important to hear that each child with Tourette is not the same, and that there will be varying degrees of difficulties – no 2 are alike.

3. Is there any other testing or further evaluations that you recommend? If they have not had a psycho-educational evaluation, this might be where it is suggested.

4. What is your knowledge of alternative approaches to treatment?  Do they know about or recommend Cognitive Behavioral Therapy Intervention (CBIT), or other possible therapies.

5. Do you do counseling, or do you have counselors that you work with and recommend?  At the beginning you may be visiting the psychiatrist more often, but once the treatment has been established and things seem stable, then your visits with the psychiatrist may be every two to three months. Additional therapy may be needed. If they don’t do the therapy themselves, the communication between the two professionals will be important.

6. What medications do you typically recommend and how do you approach treatment?  Do they talk about suppressing the tics (which really may not always be the most concerning problem), or take the time to see if there are other pressing problems underneath such as anxiety, depression, OCD, rage, ADD/ADHD, or learning disabilities.  Many times successful treatment of the co-morbid disorders may lessen the tics tremendously – it did for us. Do they recommend a period of time for counseling and getting to know your child better before starting medication?

7. How do you approach medications with a child?  Do they hand you 1 at a time, or throw you five?  A conservative approach seeks to find which is the most important symptom to deal with, and switching or adding additional medications as needed. There are no tests for Tourette, and there can be a time of trial and error until you reach the right balance with medication.  If you are with a physician that you have a good relationship with – communication and honesty will lead you all in the right direction.

Note: Continue journaling between visits to the physician.  If the decision is to start medicine, you and your physician will be deciding which are the most pressing symptoms that might be helped with medication.  You want to note the behaviors or symptoms that you are hoping to be resolved with the medicine before starting the medicine.  Keep track of those that you have listed, and when the symptoms or behaviors seem to be getting better or resolved.  You also want to note if they aren’t being resolved, or if other symptoms or issues start to appear.

8. Go with your gut.  The physician that makes you comfortable and gives you confidence in them will do the same for your child.

You’ve started your journalling, and are in the process of finding a physician who you feel comfortable working with. Next time we’ll start to get a glimpse of what might be under the umbrella.

Note: Physicians are bound by privacy laws called HIPAA.  This is a federal rule that is enforced by the office of civil rights. It stands for “Health Insurance Portability and Accountability Act”. This rule sets the national standards, and protects the privacy of individually identifiable health information.  In other words, they can’t discuss anything you say with anyone without your permission.  Take the time to read the paper you are required to sign when starting treatment.



Three: The Umbrella

In May of 2002, we had our first observation that led to the beginning of a very crazy year. This was when we had the visit to his school from the psychologist that I mentioned in the last post. Her impressions and observations included the following:

Repeatedly stretching out his hands, snapping fingers, eye blinking. Folding his arms & putting his head in his arms over and over, touching everything…touching the wall and then rubbing his eyes repeatedly in a sequence. He walked around the room swinging his arms repeating a complex motor sequence – crossing his arms, putting his head in his arms, and then sweeping the floor with his hands. His arms moved in random ways that did not appear to be directed toward any goal.  She noticed facial tics, and that he was making mouth sounds. He would repeat words or phrases constantly. None of this seemed to be goal directed, or for the purpose of attracting attention…she saw that he seemed oblivious to them.

At home we noticed head rolling, gasping, grunting noises, touching things like door knobs in repetitive sequences, shoulder shrugging, along with some vocal noises such as “ch-ch-ch” or “sh-sh-sh”, and “woop-woop-woop”. There were school issues that were starting to surface also.

So here it was, the red flags were raised and we started down the path of dissecting everything that he did in the hopes of finding an answer.  In looking back at all that happened, the list below seems incredibly crazy now – but I was a frantic mom on a mission to figure out my amazing little mystery boy…I was scared and no one was there to sit me down and reassure me that things may seem overwhelming now…but hang in there.  With each evaluation my fears were confirmed, or it added more concerns to my already overflowing plate. New words and new issues led to being even more overwhelmed. Over the next year, the following mission was a result of this search for answers:

1.  July: a Neuropsychological Evaluation from a local Neuropsychologist

2.  August: Securing an IEP with additional testing at his school

3.  August: An occupational therapy evaluation at a local hospital (therapy began)

4.  August: A vision therapy evaluation by a local eye doctor

5.  October: Sought the help of a local Psychiatrist (I will describe this nightmare next)

6.  December: An auditory processing evaluation at the local University

7.  January:  An educational evaluation by a Tutoring center  (tutoring began)

8.  January:  An evaluation by a Pediatric Neurologist (since it was over a year since symptoms were noticed, a Tourette syndrome diagnosis was confirmed)

9.  February:  Another comprehensive Psycho-educational evaluation…I had just heard that this facility did amazing detailed evaluations (and they did)

10.  April:  Social skills evaluation at a center for social skills training

And the therapy continued this whole time…oh my goodness!?  We spent a fortune on testing, an incredible amount of time, and were now spending a fortune on therapies to fix it all…

Lessons learned…

My first thing to say to other parents is to slow down and take a deep breath…

I expected everyone else to give me the answers, but I hadn’t really taken the time to sit back and really look at what I was seeing, and what I knew about my child. In hindsight, I wish that I had trusted that I knew more about my unique and confusing young child than I thought I did. I was not an expert on the disorder, but I was the expert on my child. I knew how sweet, how smart, and how sensitive he was.  But I also knew what a difficult time he was having, and where he was having it. I had already become a great observer of my child without realizing it. Parents have a lot to contribute. But, I was super stressed…and I hate to admit it…even with all my good intentions, I was becoming another stressor in his life.  I wish I had a mentor, someone to hold my hand and slap me silly when I was anxious and obsessing. I did have a really good friend that tried…but I didn’t listen very well thinking that she just couldn’t understand. My anxiety was leading to depression. I was not putting my oxygen mask on…I was just running around trying to find someone else to help me figure it all out. I truly felt that my husband and I were alone.  It was my child, and I would go to the ends of the earth to make things right for him.  My fears started reaching far in to the future, and this future was with a diagnosis that I still did not understand.  His issues seemed to be going beyond the first red flags that were the tics.  But, I didn’t think of it yet as part of the diagnosis – I felt like I was juggling several separate diagnoses that were not related to each other. It was all over the place. I was standing out in the rain holding the umbrella in my hand. I didn’t realize yet that I needed to open it, shield myself from the rain, and take some time to look at what was underneath it.

Journal, journal, journal…go out and buy a journal and start jotting things down.  Dates, observations, symptoms, and concerns.  I’ll talk a little more about this in the next post. When you feel more comfortable with being able to sort out and articulate your child’s issues that are most concerning to you, then make an appointment to see your pediatrician. A good physical examination is a great place to start. A pediatric neurology evaluation might be next to confirm a diagnosis. Your doctor should be able to give you a few references for a good psycho-educational evaluation also. It usually takes a few months to get an appointment for this type of evaluation. They can be pricey, but your physician may be able to help you find where to get one for less, or that your insurance will cover.

Our son’s psycho-educational evaluation involved 3 visits. The first visit included a discussion with us without our son, then a little time with him in the room with us. The psychologist also spent some time with him alone.  This visit gave her enough information to formulate a direction to go in. It helped guide what type of testing needed to be done when we were to return the next week.  The second visit involved just our son and all of the testing. The third visit was the summary and explanation of the results and their impressions. This was extremely helpful. The following is a link to explain the process in more detail.

What is a psycho-educational evaluation? http://privateschool.about.com/od/questions/a/What-Is-A-Psycho-Educational-Evaluation.htm







Two: Meeting Andrew

After we had the diagnosis, I decided to do what I do with most things that I get involved with…dive right in. We signed up for the National TSA conference in Alexandria, Virginia. I wanted to be with people who knew more than I did, and was desperate for information…it just seemed like the logical place to go.

My husband was not able to go on this trip, so my son and I took the trip together. We talked a lot in the car and on the plane about meeting others with Tourette syndrome. Besides knowing Rick, an adult in our home town with TS, this was the first time we would be in a place where we would meet a lot of people with TS. I set him up with their conference program for kids while we were there so he would have the chance to meet other children with TS.

We arrived at the conference hotel, and one of the first people I met was a man named Andrew who had severe TS at the time. We met him hanging out in the lobby with many other adults with TS at the conference. Rick from our hometown was sitting with Andrew, so I headed over. I remember that feeling of being anxious, but relaxed at the same time. It didn’t matter to me what his symptoms were…I felt like there were no guarantees that this was not our future…I was there to learn.

As we talked with my son at my side, a slew of obscenities came out several times. When first meeting someone with coprolalia, it can take you off guard. I have to say that I wasn’t sure if I should say “thank you” to Andrew when he said “nice tits”?  But in between his bouts of tics, we had a really nice conversation that made me smile and put me completely at ease. He has a wonderful British accent, and I remember him saying that our conversation was “charming”. I had just met one of the nicest people ever. When we left I asked my son if he had any questions, and he said, “no Mom, he was really nice!” I made sure that we had the chance to sit with Andrew several times throughout the conference…not because of my curiosity anymore, but because I truly enjoyed him. He helped me more in those few days than he will ever know. Being able to see others accept him, and knowing that I now had the ability to look beyond this disorder was comforting. I returned home and shared my experience with my husband. It was the first time I felt like I was able let him know that no matter what, we were going to get through this, and our little guy was going to be alright.

There is a lot of information about coprolalia, but most articles don’t tell you how to react when you meet someone. I think it would also be helpful for parents to have more information on how to raise and advocate for a child with this symptom. For the individual with coprolalia, your reaction can set the tone for how they are seen by others. Sue Connors has written a book called “The Tourette Syndrome & OCD Checklist” which has easy to access and helpful information on TS. In the section specifically for teachers on page 101 she states: “It is first and foremost your understanding of and second your attitude toward the vocal tics that will make or break your success at having a child in your class with TS.” We are planning a post dealing specifically about having a child with coprolalia in the near future.

Tourette’s has not been easy on Andrew in the past, but he is 46 now, married to Amy, and happily employed by the USPS. He recently underwent DBS this past year with great success, but it has not taken his tics completely away. Andrew prides himself on having a great work ethic, and leading a normal life even with the tics that he still has. He goes grocery shopping, eats out, and loves to take walks. People still move away from him at times, but he says that is their problem…not his. He loves the saying “I have Tourette’s but it doesn’t have me”. We love you Andrew 🙂 !

Here is a short clip about Andrew and his DBS: http://www.youtube.com/watch?v=TyW6yJTBhlg

One: In the beginning…

Part 1: What’s going on?

There were frequent outbursts, inflexibility, unusual worries, and behaviors popping up that were as confusing as they were concerning. How can a child be so stressed at the age of 6? Getting him ready for bed at night was sometimes the hardest…having a 6 year old ask you things like “am I going to die tonight?” was frightening and exhausting. Where was all this coming from…we just didn’t get it.

Then I noticed the noises.  The first was a gasping sound. He would take a deep noisy breath as though he was gasping desperately for air. He didn’t really seem to be in any distress, like this was something natural going on. He would gasp like this while eating, and being a nurse my immediate fear was that he was going to aspirate his food. So I would stare at him during meals, replaying the heimlich maneuver over and over again in my head. Then he displayed what looked like fidgeting, and tapping…lots of tapping.  At dinner one night we watched him eat a couple of bites of food, then get up out of his seat, walk around the table once, sit back down, eat a few more bites, and then repeat this ritual until dinner was over. I remember looking at my husband and daughter…all of us perplexed by what we just saw. Later I noticed the head rolling, and the “woop-woop-woop” that began during homework, or again at meals. Next was the constant “shh…shh…shh…shh” sounds. He was also chewing on the front neck of his shirt constantly. I had to bring extra shirts with me when we were out because of the ring of a wet mess that accumulated under his chin, and on his shirt.

This was about the time when we sought the help of a therapist. He was identified as having childhood anxiety, and the therapy began.  By the age of 7 things just seemed to continue… even with the weekly therapy.  We were not ready to consider medicine, so we continued to look for answers, or explanations.  I had noticed that school days seemed to be the worst, and asked the therapist if we could have someone observe him during school. He recommended that another psychologist in their office go and watch him for an afternoon. This first observation was to be the beginning of the slew of testing and office visits that would continue for awhile.

After the psychologist’s visit to his school, we met with her to go over the report. It listed a few pages of what she described as simple and complex tics that he exhibited throughout the day, mostly complex tics.  This was the first time someone mentioned the word “tic”. She started by telling us that her visit went longer than it was supposed to be because it was fascinating to watch him.  In her conclusion, she recommended that we see a pediatric neurologist to evaluate and possibly confirm the diagnosis of Tourette syndrome…I really don’t remember much of the conversation after that. I went home and crawled in to bed for what seemed like weeks, hoping that this wasn’t true – there had to be another explanation.  How could my smart, sweet but complicated 7 year old have a disorder that I knew could be socially devastating…that movies make fun of…I know she’s made a mistake…how could we miss something like this?

Now I had more questions, so the frenzy to find the answers began.

Part 2: Learning about TS

In hindsight, what did we really need to know? How could we have avoided some of the stress that we experienced in the years that followed? When you are presented with the possibility of Tourette syndrome, the initial focus almost always becomes the tics. Everyone starts by asking, “what’s a tic”? What does it look like? Is what they are doing a tic or not? Or, how do we stop them? But, for parents I am going to start in another place, because I feel that too many of us get overly focused on fixing the tics. This is not always the part of Tourette syndrome that always needs to be explored first, especially in the early stages. The tics may not need to be fixed right now…or maybe ever.

TS is a complex disorder…it’s best to understand this right from the beginning. There are several factors that may effect how a tic is expressed, and minor tics may not necessarily need treatment…just acceptance.  A wonderful comprehensive textbook simply called “Tourette Syndrome” by Drs. Leckman and Martino was recently published in 2013 by Oxford University Press.  This is where I have been able to get the most up to date information about TS. Dr. Leckman is widely recognized as a master clinician with special skills in the evaluation and treatment of Tourette’s syndrome (TS) and early onset obsessive-compulsive disorder (OCD). He practices at the Yale School of Medicine’s Child Study Center. Dr. Davide Martino is a Clinical Lecturer at Queen Mary University of London and Consultant Neurologist at the South London NHS Trust. His clinical and research activity is devoted to Tourette syndrome and other movement disorders. There are a lot of wonderful resources on the market also.  I’ll be creating a list of resources on the “Resources” page. If you have one that you would like to recommend please let me know.

I like to use the analogy that Tourette syndrome’s tics are like an umbrella that may be covering many other things underneath it. It’s good to understand that tics are influenced by a person’s environments. The “Tourette Syndrome” textbook by Martino and Leckman mentions “internal” and “external” environments. The first is the “internal environment”. What are the possible internal struggles going on with these individuals?  Several co-morbid (associated) disorders have been identified that should be explored when approaching the diagnosis and treatment of someone exhibiting symptoms.  Possibilities can include anxiety, depression, attention deficit disorder (ADD/ADHD), obsessive compulsive disorder (OCD), social skill deficits, processing problems, and learning difficulties or disabilities. So, it’s good to understand that what’s happening on the “inside” has an effect on their symptoms of TS.

Then there is the influence of the “external environment” on the individual.  This is related to relationships and the physical environment that someone with TS is exposed to every day.  Parents need to take a look at school, work, activities, home, or just being out in the community.  How comfortable and understanding are others when around the person with TS? How much, or what kind of influence do they have on this individual? What other external environmental stressors may be effecting them? Does the child experience success or struggles in school or activities? Do they have a good group of friends, or are they being bullied? What’s happening on the “outside” also has an effect on their symptoms of TS.

Tourette syndrome has a neurobiological component.  Neurobiology is defined in the World English Dictionary as “the study of the anatomy, physiology, and biochemistry of the nervous system”.  What does this mean?  Basically, that there is a genetic and a physical component to TS.  Much of the research related to TS involves studying the brain and the nervous system of those effected by the disorder. How their “brain” is wired also has something to do with how their symptoms of TS are expressed.

An area that parents forget to look at is “are there times when the tics seem better”?  Are there times when they are not noticeable? What activities or environments seem to put them at ease, or put the tics on hold?  For some individuals it will be activities that require concentration.  I know of a musician who rarely tics when playing the guitar.  My son would rarely tic when intently focused on reading a book. I think playing video games will most likely be a big one on the list. This can be confusing to parents when there are times the tics seem to be minimal, or missing altogether.

To add to this confusion, Tourette syndrome has periods of “waxing” and “waning”. Waxing will be times when tics seem to increase in severity, and waning is when they seem to decrease, or disappear for days, weeks, and even months. Sometimes tics will disappear all together, and new tics appear in their place. Some will disappear and the reemerge again at another time. Another good reason to start looking beyond the tics, and just keep observing and documenting what you are seeing…it’s a lot to absorb.

So before we go ahead and dissect the physical symptoms of TS, let’s make sure we understand that Tourette syndrome is a complex disorder that can look like, and mean different things to each person.  As parents, we need to be aware of this when seeking information, and help for our children.  In other words, it’s our job to get to know our children better before jumping in to any treatment.

There is a lot of pressure on the parents to get it right.  We walk in to the physician or therapist’s office with a young child who is unable to articulate all that might be going on. What we say during these visits may influence what their treatment will be focused on.  A good physician who understands TS will know this and ask the right questions to guide you.  But, we are still at a point in time where it continues to be difficult for the general medical community to understand all the complexities of TS. I’ll talk about journalling in the next post.

There is a saying…if you want surgery go see a surgeon.  Know that the specialist you choose to go to may influence the direction of treatment. A neurologist or internist may be most comfortable dealing with the tics. A psychiatrist or therapist may look primarily at the emotional-behavioral issues. The answer may be incorporating a team of support that will communicate and work with each other when deciding treatment. For now you may become the “case manager” for your child. The medical community is headed in the right direction, and it’s possible to get the proper treatment close to home. Take the time to develop a good relationship with a caring and understanding physician that is willing to help explore the complexities of the diagnosis with you.

The bottom line…there is no one answer or treatment when presented with the symptoms of Tourette syndrome.  The approach to treatment can start on the right path by understanding more about what might be going on, and prioritizing your child’s unique issues at the current time.  The Tourette’s path is usually a windy road of trying different treatments or medications until you get it right. But hopefully we can smooth it out a bit. Also, be patient…just when you think you’ve got it right…it can change. Tics can increase or decrease over time, and challenges can surface when enough stress is put on an existing weakness that they may have been hiding or compensating for. In the beginning, seek to gain knowledge of the disorder, as well as a good support network of family, friends, and professionals. This will truly be important over time.

Another post soon will look further at the signs and symptoms of the possible co-morbid disorders and their impact on the diagnosis. But, let’s take a quick peek at what a tic looks like, and how a physician diagnoses an individual with a tic disorder, or Tourette syndrome.

Now  the “tics”…here is just a quick break down of motor and vocal tics. Motor tics are muscle movements that do not seem to have a purpose.  A simple motor tic involves one muscle group and is usually brief, while a complex tic involves more than one group of muscles and lasts longer. Less common motor tics can look like inappropriate gestures called “copropraxia”, or can be expressed as self-injurous behaviors. A simple vocal tic is when a person makes a sound or a noise. A complex vocal tic can be a word, phrase, or inappropriate words. This can be also be heard as someone repeating themselves, or repeating something they have heard – called “echolalia” or “palilalia”.  The complex vocal tic that involves inappropriate words is called “coprolalia”. There are also times of tic suppression that can cause a build up of the tics, with a resulting release or explosion of tics when they get home that can last from minutes to hours.

The Diagnostic and Statistical Manual of Mental Disorders (or DSM)  is the standard classification system of mental health disorders used by mental health professionals here in the United States ( http://www.psych.org/practice/dsm ).  In the DSM-V, the most recent addition, there are guidelines to help differentiate between 3 different tic disorders; Tourette syndrome, chronic motor or vocal tic disorder, and a provisional tic disorder.

But, basically a diagnosis of Tourette must encompass:  1. Both multiple motor and at least one vocal tic which may not happen at the same times.  2. Tics for at least a year, either on and off, in bouts, or every day.  3. Tics begin before the age of 18.  4. The symptoms are not due to other diseases or medicines. Chronic motor or vocal tic disorder involves either vocal tics OR motor tics, and has lasted more than a year. Provisional tic disorder can have motor or vocal tics, or both, and it has lasted less than a year.

The Centers for Disease Control, or CDC, has a great discription of the differences of these disorders on their site at http://www.cdc.gov/ncbddd/tourette/diagnosis.html .

The Tourette Foundation of Canada has a great list of possible tics on their site at: http://www.tourette-london.ca/ae0016.htm

Intro: A friendship…

When reflecting back on receiving my son’s diagnosis, I remember wishing I had another parent to talk to who had experience with TS. I needed information, reassurance, and perspective on the disorder. I was desperate to know that someone had walked this path before, and had been through the myriad of emotions that were consuming me at that time.  We ended up muddling through the best we could. Some of you may have a child with more complicated symptoms, and others with milder symptoms. I think that parents going through this process can empathize with all parents who are on this path. Although this blog will be directed primarily to parents or guardians of children who have been, or are in the process of being diagnosed with Tourette syndrome (TS), I hope that anyone connected to an individual with TS may benefit from the information provided.

Over 10 years ago we were thrown in to this world when he was diagnosed.  I still remember the moment the therapist uttered the words “Tourette syndrome”…but the days and weeks after that are still a blur.  Those first years were full of anxiety, confusion, fear, and uncertainty. There were times when we had to fight others for understanding and compassion, and times when we ourselves were the ones fighting just to understand. But overall, it led us to some of the most amazing and wonderful friendships and connections that we would have never made without it.

Some great people will be supporting this blog by contributing their thoughts and experiences with TS. Some will be professionals, and many like me will be just experts on their children and their own experiences. The apple does not always fall far from the tree, and you may be a parent with TS yourself. You may have experienced one or more of the common co-morbid disorders that can go with it such as anxiety, depression, OCD, ADD/ADHD, learning difficulties, social anxiety/difficulties, or sensory issues. Many parents beat themselves up because they feel that they may have genetically contributed to their child’s diagnosis. If you have had some of the same struggles that your child is having…you actually might be the best person for the job.

There will be times when it will be hard to put your oxygen mask on when you are in a crisis yourself. I hope that this blog will serve as the oxygen mask…the chance to step back and learn from others that have been there. After working through the difficulties that come with this diagnosis, and meeting so many people affected by the disorder, we want to be able to share our thoughts and experiences with other parents. Living with, working with, or loving someone with TS allows you to learn how valuable it is to get to know people far below the surface. We spend a lot of time looking at weaknesses and struggles in order to be helpful and supportive, but the journey should also include discovering the talents, strengths, and inner goodness of these individuals.

Tonight (Sunday Feb. 16th, 2014) we will be releasing the first post. Sign up to the right of the page to subscribe to future posts. Then, when a new post is put on this site, an email will come to you to let you know about it. Past posts will be always be available here on the site. The oldest ones will be moved to the archives for you to access at any time.

Welcome to Tics and thoughts about Tourette syndrome (Tats)…I want to let you know that others have been where you are, and hope that sharing our stories will be the beginning of a great friendship for all of us.

Along with sharing our family’s journey with Tourette syndrome (TS), we will be providing some helpful information related to TS, as well as other differences and disorders throughout my posts, as well as on the Resource page.