Camp Twitch and Shout Family Weekend 2010

In the cafeteria at Camp Twitch and Shout

We just got back from our second annual Camp Twitch and Shout Family Weekend at Camp Twin Lakes in Winder, GA.  And just like last year’s weekend this one was equally inspiring.

Over the past 6 years, I have had the fortune of meeting so many families whose lives have been touched by Tourette Syndrome.

There were several moments during camp that I had the opportunity to stand back and watch.  As the excitement filled the air, the tics were unleashed in domino fashion.  Wall pounding, clapping, stomach punching, screaming, squatting, jumping, blinking.  Of course this is only a small representation of what I saw and heard.

But if I was asked to describe in one word what I really saw it would be strength – strength in both parents and kids.

Kids with TS look like everyone else.  There are no physical markers and they are quite often highly intelligent.  As a result they are at risk of being misunderstood and mismanaged.  To the outsider TS can appear to be nothing more than bad behavior as opposed to what it really is, a neurological condition.

I have been on the receiving end of many judgmental looks from other parents.  Looks that say you are a bad mother and have no control over your child.  But what they really need to know is that my child has no control over himself.  What they really need to know is that I am a good mother who will do whatever it takes to make sure my child is treated fairly.

Can you tell who has Tourette's?

Imagine being told we aren’t really interested in a student like your daughter.

Imagine watching as your child repeatedly slams his fists into his already bruised thighs.

Imagine worrying every day about your child being bullied or made fun of.

Imagine, as a parent, choosing to let your child pound his fists into you, in order to prevent him from hurting himself.

Imagine being a teenager trying to fit in and always standing out in a crowd.

Imagine going to see a movie with the constant fear that you might be asked to leave at any time.

Imagine being told to be still or be quiet when your body won’t let you do either.

Imagine having to squat and touch the floor every fourth step.

Imagine being in a wheelchair because your tics make it difficult for you to even walk.

Now imagine a place where none of this matters.  A place where no one judges you, or laughs at you.  A place where you belong.  This is Camp Twitch and Shout.  And for parents the family weekend is a place where, despite the fact that your child is hitting you, or spiraling into a TS meltdown no one will stare or question your parenting abilities.

The best part of the weekend for many parents isn’t the canoes, or kayaks, or even the ‘Smores.  It’s sharing our stories and discovering the similarities.  Just knowing that there are other parents who have cried at night out of fear and frustration; that there are other parents who worry what the future holds for their children – just knowing this makes everything okay.

We are a family at Camp Twitch and Shout and though we are spread out all over the country, I really don’t think we could be any closer.

*Visit these helpful links for more information:
TICS of Georgia
Moxie Momma’s Tic Dock
Brad Cohen Tourette Foundation
Camp Twitch and Shout

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Yoga + Tourette’s = A Powerful Lesson

photo credit: h.koppdelaney

I’m pleased to have this guest post from my friend Jennifer McIlvain.  I had the pleasure of meeting Jenny at last year’s Camp Twitch and Shout family weekend.  After reading this please pass it along to someone and spread the chain of awareness.

mantra:         a word or formula, chanted or sung  . . . as an incantation or prayer.

By this time of year, many of us have given up on our New Year’s resolutions.  Although getting in shape is a great notion, I suggest that we try to make the most of 2010  by resolving to accept diversity in our daily lives.

I am a person living with Tourette’s Syndrome (TS), a neurological condition that results in involuntary movements and vocalizations called tics. During the past few years, I’ve made an effort to educate others on the value of diversity. Earlier in the year I decided to venture out of my comfort zone and try yoga. I was quickly reminded of how much opportunity there is for others to embrace a tolerant attitude.

Members of my family have often spoken about the benefits of learning and practicing yoga. Before I made my appointment at a local yoga studio, I informed the owner about my situation. When they assured me that there wouldn’t be any problem, I began to look forward to the class. However, after taking a few classes, I received a call from the owners. They asked me not to attend group classes again because my tics were disruptive.

Of course I was upset – not just with the business owners who had insisted that I was welcome in the yoga class. But I was also somewhat upset with myself. I asked myself, “What could I have done differently so that I would not feel excluded — again?” In the end, I realized that I had done what I thought was right. I talked to the owners about Tourette’s in advance. I described my tics and explained TS in detail. They still welcomed me to the class.

Tourette’s is my constant companion and has taught me many lessons.  This experience is another lesson that I can honestly thank TS for teaching me. In hindsight, the business owners could’ve asked me more questions. I could’ve gone to meet them for a few minutes. No one really understands diversity until they experience it face-to-face.

I do not consider myself disabled.  Neither do my parents, my siblings, my husband, my son or anyone who knows me really well. I wake up every morning and try to embrace what the day has to offer – my tics are with me for the ride. However, that ride did not extend to a particular yoga studio.

Ultimately, I believe that it’s only when people take the time to educate themselves about TS that the pointing and staring will decrease. Whether a person vocalizes Tourette’s tics, grows a long beard due to religious reasons, or uses a wheelchair, he or she has probably been on the receiving end of a confused look or not-so-quiet whisper. There are alternative and more effective approaches to take – for individuals and for business owners.

Like any other type of self-improvement, keeping an open mind and educating yourself about the differences — and similarities — among others is rewarding in countless ways. I have hope for 2010. It’s only April.

A Hopeful Guide for Business Owners:
Here are five simple tips for business owners who may be approached by individuals with special needs.

1.   Please ask questions – lots of them. We don’t mind. We prefer that you ask us as many questions as possible rather than promising something that you can’t deliver. We can talk (face-to-face, preferably) for as long as needed until you are comfortable with the situation.

2.   Do a little research. Simple resources like wikipedia.org, offer plenty of easy-to-understand information. If you don’t do the research, ask someone to do it for you.

3.   Make sure that your staff is on board. Employees who smirk and stare can undermine your efforts at welcoming a  diverse base of customers.  It’s critical that employees understand and support a company’s efforts.

4.   Ask around. If necessary, offer a recommendation. Find out if there are others in your area who can accommodate individuals with special needs. If you are unable to help, become a resource. The word of mouth advertising you’ll receive will be worth it.

5.   Keep an open mind. Don’t assume that because you haven’t worked with someone “different” before, that you won’t ever be able to. Be creative with your programs and think of the possible solutions and benefits for all involved.

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My Life in Letters – “T” is for Tourette, Tic and Twitch

Jacob and one of his amazing counselors Rhett

I just got back from picking my oldest up from summer camp.  It was exactly what you would expect from a summer camp – swimming, archery, fishing, arts and crafts, s’mores and campfires mixed with the noise of a hundred plus excited kids.  Some of the noise, however, might surprise some people – grunting, snorting, barking, screaming the sound of a hundred plus kids who have Tourette Syndrome (TS).

Jacob and his counselor Ayan

For these kids Camp Twitch and Shout represents so much more than a chance to  experience a parent-free week surrounded by new friends and plenty of fun.  Camp Twitch and Shout is a refuge for many of them, maybe the only time during the whole year when they can tic without having people judge them.  And for the parents who entrust their children to the camp counselors for 5 days with absolutely no contact, Camp Twitch and Shout is perhaps the only time when they can rest easy knowing their children are not being bullied or made fun of.

Landon, Jacob and David

During the closing ceremonies on Friday I sat back and watched these kids in amazement. One child was pounding his fists into his thighs as hard as he could.  One little girl let out a shrill scream to rival that of any horror flick.  Each one of them struggles on a daily basis to have some control over the tics that have taken over their bodies.  And yet I saw nothing but strength in every one of them.

One of the counselors took the stage and spoke to the crowd.  “I just wanted to say that this is a camp for kids with superpowers.”  At that very moment one of the younger girls screamed.  “See,” he continued, “there’s one now.”  Another camper ticced.  “And there’s another and another over there.”

And I couldn’t agree more.  Are these kids different?  Absolutely.  And although to many the differences to be seen are only the obvious ones, the ticcing ones, to me and to every other parent of a child with TS, the differences go far deeper than that and only serve to validate what we have always known in our hearts, our kids are superheroes.

Our kids are different because they get it.  They live with adversity, so they will seek to banish it in the lives of others.  They stand out wherever they go and it’s not because they have TS, it’s because they are accepting of others who are different.  They are compassionate and tolerant and seek justice for all regardless of what their challenges might be.  They are fearless and truly extraordinary.

How lucky are we as parents to be raising  a new breed of superheros who are certain to make the Justice League look like the comic book characters that they are?

Truth, justice and Tourette Syndrome – history in the making.

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Five Things Friday – Misconceptions about Tourette Syndrome

I have had several conversations with people who make false assumptions about my son based on the information that the media provides about Tourette’s.  It angers me that many of the media sources who do stories on TS or make reference to TS do so in a very sensationalized manner, leaving the general public to assume that TS is a cursing disease and is punchline fodder.

With megaphone in hand I am telling anyone who will listen what TS is, and more importantly what it isn’t. That said, here are five of the most common misconceptions that I have seen with regards to Tourette Syndrome.

Misconception 1:  TS is a swearing disease.  The images that we see on TV are inaccurate.  Less than 10% of patients with TS have coprolalia – a condition that causes them to use obscene language.

Misconception 2:  TS patients make funny sounds and move in odd ways – that’s it.  Unfortunately, a diagnosis of TS usually doesn’t come alone.  TS is notorious for bringing a few friends along for the ride.  OCD, ADD, ADHD are some of the co-morbid conditions often associated with Tourettes.

Misconception 3:  TS is very rare.  Many cases of Tourette’s are not correctly identified or are so mild they go undiagnosed.  However, according to statistics between 1 and 10 children per 1000 have Tourette’s and as many as 10 per 1000 people have some form of a tic disorder.

Misconception 4:  TS patients are debilitated by their condition and cannot lead productive lives.  Many people, when I tell them that my son has TS, ask if he is able to go to school with “normal” kids.  After I take a deep breath I assure them that my son is just as “normal” as any other kid (whatever that means) and that yes, he can hang out with the regular crowd.  TS does not prevent him from doing anything.  And while some cases are more severe than others, and can affect one’s life adversely, most people with TS lead very active, productive lives.

Misconception 5:  People with TS can control their tics if they really want to.  Try this:  Hold your breath as long as you can.  Can you hold it for 30 seconds?  A minute?  Longer?  Maybe, but at some point you will need to breathe.  And if you’ve held it for a long time, you will find yourself gasping for air.  TS patients can suppress tics for short periods, but it’s very uncomfortable (so I’m told by my son) and usually results in an explosion of tics.  Telling someone to stop ticcing is like telling someone to stop breathing or blinking.  It’s possible, but not for long.

May 15 – June 15 is National Tourette’s Awareness Month.  Take a minute to visit this link and educate yourself on TS. Then pass this on to someone else. Let’s start a chain of awareness so that kids like Jacob can be understood and accepted.

Also be sure to visit my Tic Dock page to read more about TS and how it has affected my life.

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Giving up vs. Letting up

I’m a part of a group of incredible internet moms whose kids have Tourette Syndrome.  Each woman is in a different stage of her journey and each woman respects the uniqueness of every journey represented in our group.  I am very thankful for this group and for the woman who got us all together in one place.

We have all succumbed to fits of anger and depression and found that, at those times, this group of phenomenal women has been our lifeline.  We have laughed and cried together.  We have shared our disappointments regarding our children and ourselves.  We have let our guard down and trusted these women that we only know through words.  We have found strength in our numbers.

But despite the strength that I have discovered within myself, I still stumble and I still doubt.  I find myself reading each post, digesting all the methods and medicines that have been tried, and wondering, have I given up on Jacob by choosing not to continue actively searching for a cure, a fix?

It’s been six years since Jacob’s diagnosis and I’ve tried several things – vitamin therapy, halfhearted diet restrictions, behavior management – several things before I decided that it was time not to give up but to let up.  And now I’m questioning whether there is a difference between giving up and letting up.

I was worried that that was exactly what I had done – given up on Jacob – given up on trying to help him.  So I turned to the source.  On the way to school I asked Jacob, “Do you feel like I need to keep trying, keep looking for something to help you. Like maybe I’m not doing enough for you, that I’ve given up on you with the whole Tourette’s thing?”

And he said in all his 12 year old wisdom, “Mom, I have Tourette’s because I’m supposed to have  Tourette’s.  This is who I am.  I’m meant to have this.  You can’t fix me and I don’t need to be fixed.”

Which is what I thought anyway.  My gut instinct told me you’ve done everything you can.  He’s happy.  He’s healthy.  He’s doing well in school.  Yeah, he still tics, but that’s just who he is.  A diabetic even when they are on medication, and living a healthy life still has diabetes.  No matter what I do he will still have Tourette’s – it’s neurological.  That’s how he was born.  There is no cure.  Not yet.

But at what point do I step back and say this is who he is?  It’s okay.  It’s okay for him to be a kid with Tourette’s.  But that’s not all he is.  He’s not just the kid with TS.  In fact, that’s such a small part of who he is.  He’s the tech kid.  He’s the kid who can fix my computer.  He’s the kid who can make his four year old brother double over in laughter and believe in magic.  He’s the kid who teaches himself calculus in  his spare time.  He’s the kid who makes awesome You Tube videos on how to modify Nerf guns.

He’s that kid.  He’s that kid first and then he just happens to be a kid who has TS. No matter what I do he’s still going to have TS and he’s still going be okay.

I’m not judging people who haven’t gotten to this point.  It took me 6 years, and maybe some people will never get to this point.  That’s fine too because the bottom line is that as mothers we are doing what we feel we need to do for  our kids.

I felt after 6 years that I needed to stop trying to fix Jacob.  I needed to stop trying to figure him out,  because I knew what was going on with him.  I knew he had TS.

I’m not a scientist; I can’t find the cure.  People are working on that for my son.  But you know what people aren’t working on for my son? Having a relationship with him.  Getting to know him aside from his TS.  And that’s what I needed to spend my time on.

I needed to spend my time on getting to know this amazing kid.  I needed to spend my time hanging out with him and not trying to fix him or solve his puzzle every time I looked at him.  That’s not what I’m supposed to do.

I’m supposed to enjoy him and the whole time that I was trying to fix him I wasn’t enjoying him.  I wasn’t enjoying him at all because I was stressed that I couldn’t do what I thought I needed to do for him.

But you know what?  What I needed to do for him was actually pretty simple.  I needed to be his mother.  And to listen to him.  And enjoy him.  That’s what I needed to do.

I see now that there is a huge difference between giving up and letting up.  Giving up means you lose hope and feel defeated and let your garden die.  Letting up means that you stop and smell the flowers that have bloomed right in front of you while you were reading a book on how to grow your garden.

Despite the gardener’s best intentions, Nature will improvise.  ~Michael P. Garafalo, gardendigest.com

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Special Post about Tourette Syndrome

Please watch this video about kids with Tourette Syndrome. It’s what my son deals with on a daily basis. Teach tolerance and acceptance. And above all else educate others. If you know someone who does not understand what Tourette Syndrome is please forward this video.

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Ripples

photo credit: Marc A. Sporys

“Good Ripples” from the TV show Joan of Arcadia. The term is used when a person’s actions (however small) end up having a positive outcome. ‘Good Ripples’ are felt in just about every episode of the show as God asks Joan to do small or big tasks which sometimes seem to her to be pointless. Joan doesn’t always see the positive effects of her actions, but that doesn’t mean they aren’t significant. -excerpted from Urban Dictionary

If you’ve ever dropped a stone in the water, you’ve experienced the incredible difference one small action can make.  Just watch the ripples vibrate out from the center and dance across the water’s surface – that’s how karma works – with a rippling effect.

Imagine yourself as the stone that has been dropped onto the Earth and open yourself up to the possibility that you can have that same rippling effect.  But ripples aren’t always good and that’s something very important to know.  It doesn’t matter what kind of stone is dropped there will always be resulting ripples.

Someone dropped a stone in my pond today, but it was more like a heavy boulder being catapulted from across enemy lines.  Bad ripples all around.

I was sitting in Atlanta Bread Company this morning having my coffee when a man approached me and struck up a conversation about my Apple computer.  The ensuing conversation revolved around my writing and the subjects that I enjoy writing about. 

I began to tell him about Jacob and my passion for educating others about Tourette Syndrome.  Before I could say much more he said, “So does he go around yelling screw you to everyone?’  And he started laughing.  Bad ripples.

I rattled off my usual explanation of coprolalia and explained that only 10% of those with TS have this form, yada, yada, yada.  My ears were buzzing and my heart was racing.  I was infuriated and yet I said nothing more about it. 

It wasn’t until he left that the effect of the ripples hit me.  As I replayed the conversation in my mind I remembered him saying that he was a local family practitioner.  A family doctor!  A doctor who knows better than to make fun of someone who has a medical condition.  The more I thought about it the angrier I got.

I had a decision to make.  I could continue the bad ripple effect by brooding over this and spreading bad ripples all over town or I could do something productive to turn those ripples into good ones.

Fortunately, I’m a good ripple sort of girl, so I decided on a two part plan of action.  First, I felt the need to write this post to remind others of the effect even the smallest comment can have on a person.

Second, I realized that the bad ripples were still there because I felt like I had let Jacob down by allowing this man to get away with what he said without letting him know that it’s people like him, who feel the need to make a joke about something serious, who are the ones that perpetuate the very stereotype I am working so hard to dispel.  As Jacob’s mother how could I sit back and let this man, this doctor, essentially make fun of my child?

He will be back for his coffee tomorrow and I will be waiting to cast my stone into his pond.  I won’t be angry.  I won’t be argumentative.  But I will be an advocate for my son.  I will let this man know that my son, and others like him, deserve more than to be the butt of some ignorant joke.  I will let him know that as a medical professional he should have known better.  And I will leave him with my good ripples.  Ripples from a mother who loves her son as he is.  A mother who wants a world for her son that is not filled with bad ripples.

What kind of ripples will you make today?

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Moxie talks about Tourette’s and how it has affected the family

The sound and video are off on the clip so you might just want to listen to it and not watch it. Just sayin’.

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Moxie talks about Jacob’s Tourette’s

This was part of an interview that we did for a possible documentary that never came to be. Jacob is the one behind the camera, so you can hear him ticcing on and off. There’s also a great deal of wind noise.

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He’s Not Broken

Me and my inspiration

Hello everyone. My name is Michelle and I’m addicted to trying to fix my son.

It’s been nearly 6 years since my son’s diagnosis with Tourette’s Syndrome. Five of those years I spent moving through a series of emotions that I now realize are very much like the 12 step program that groups like AA rely on. I realize now that I had an addiction that took me years to overcome.

Even before Jacob was diagnosed with TS, thanks to the powerful and sometimes destructive voice of the internet, I knew. I knew that Jacob was behaving in a way that fit the criteria for Tourette’s. I knew but I wouldn’t let myself believe it. I figured if I believed it then I was sealing his fate and condemning him to a life of never fitting in and being bullied, a life plagued with low self-esteem. I spent hours online searching and searching for something that would justify my denial. I was exhausted emotionally and mentally from spending so much energy on fixing Jacob.

When Jacob was diagnosed I went into immediate panic mode. Did I give this to him? Was it my fault?  What did I do wrong?  I hated myself for the future I had given him. With this thoughts reeling through my mind, I began to slowly disappear into my son’s TS, and it consumed my every waking, and sometimes sleeping, moment.  I searched for answers, cures, solutions – anything to take this away from him.  Anything to fix him.

We tried vitamin therapy and behavior management.  But nothing changed. Jacob still made funny noises. He still moved his body in odd ways. He still fit the criteria for Tourettes.

I became furious.  Furious at myself.  Furious at God.  Furious at parents who had kids who didn’t have Tourette’s. My anxiety fed Jacob’s anxiety and many days were spent in a very dark place within myself.  My anger and resentment were stealing my life with my son.  I was mad at the world and yet, still my son ticced.

I spent many nights bargaining with God.  If you take this away I will take whatever you give me.  Make me tic.  Make me suffer, but not my son.  I’d wake up hopeful, until I heard the snorting and I would crumble inside.  Another bargain denied. I begged for a miracle, and yet still my son ticced.

I began to withdraw from life.  I was so sad for my son.  But I was also sad for me, for what I had lost.  I had the child I always dreamed of, but he wasn’t the child I had expected.  And now, I lamented the son I would never have.  This made me even more depressed because certainly I was an awful mother for feeling like this.  I didn’t love my son any less at all, I just wasn’t prepared for this particular child.  I cried all the time.  And yet still my son ticced.

Then something started to happen.  I began to meet other people with similar kids.  I also met adults, successful adults with Tourette’s.  I began to accept things as they were and trust that this was the life I was meant to have.  I could continue to live in misery and defeat, or I could embrace this and make a difference.  I started really looking at Jacob and I noticed the darnedest thing.  His Tourette’s didn’t bother him.  It didn’t stop him from being a “normal” kid.  So why did it bother me?  Once I started paying attention to how life really was for Jacob and not how I perceived it to be, once I started accepting things the way they really were, my life changed and so did I.

I finally realized something that took me 5 years to learn – my son is not broken.

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