"Tourette Syndrome Isn't For Wimps"

Before I get into my post, I want to apologize for my absence from this blog for the past year.  A number of things have kept me from being able to write.  That will be explained on my other blog, Random Thoughts From A Stay-At-Home Mom.

I want to thank one of my friends for the title of this latest post.  When I saw her post this sentence on Facebook this morning, I knew that it was exactly what needed to be shared today.  This simple quote from my friend explains how I've been feeling the past couple of days.

Last summer, Monster Man and Little Man attended Camp Twitch and Shout.  It was Monster Man's third year, Little Man's first.  The experience was wonderful for both of them, and we felt we were so blessed to have the opportunity to send them to such an incredible place once again.  It was a place where they felt that they could feel like they were just like everyone else, a place where they could feel accepted.

Perhaps the hardest part of sending kids to a Tourette Syndrome camp (or any group setting for those with TS) is that they 'tic shop'.  This is where they pick up new tics from others.  In Monster Man's case, it meant that he came home last summer with three new vocal tics: "Happy, happy, happy", "That's a fact, Jack", and "Yo, my name is Greg!" (his name is not Greg, so we got a kick out of that one).  By about the third day after camp, the new tics had lessened greatly, typical to 'tic shop' fashion.  By the end of the first week home, they had practically disappeared.

The boys attended Camp Twitch and Shout again this summer.  Monster Man's fourth year, Little Man's second.  This time, the new tics that Monster Man picked up were not as easy-going as the vocal tics that he picked up last year.  He instead picked up a punching tic, one where he grunts rather loudly while repeatedly punching.  It's not that he's punching others, but instead that he's punching tables, desks, walls, cabinets... anything hard that helps him feel the sensation his body is looking for.  We're trying to encourage him to punch softer things, like pillows, the couch, or the bed.  While it's helping him to relieve the urge to punch, it isn't fulfilling the sense of pain that his brain seems to be looking for.

Instead of decreasing in frequency and intensity like typical 'tic shop' tics, this one actually seems to be increasing.  I actually had to take him to the doctor today to have his bruised, swollen wrist checked and to have his meds temporarily increased in hopes of helping him to get past this particular phase with his tics.  It is heartbreaking to see him go through all of this pain and frustration, sometimes having tic 'attacks' that last 30 minutes with little break for his body to calm down.  It is exhausting for him, and he is frustrated to know that he can't control this urge to punch right now.

Sadly, this punch tic seems to be fairly common, and it's not the only tic that can end up hurting the ticcer. Some beat their head, their elbows, or their shoulders.  Some kick.  Some bend their bodies in positions that hurt, or forcefully push their bodies into positions that sometimes even cause broken bones.  Some people with TS have pseudo seizures, which look much like a seizure but stop just as quickly as they come on.  Some go into a temporary paralysis, unable to move their bodies as they become limp and just fall to the ground.

Sure there are tics that can make people laugh.  We came to enjoy "Yo, my name is Greg!" in the short time it was in our house.  Some can make people smile, like chirping, blowing kisses, or saying "Happy, happy, happy."  A fellow TS mom recently commented on how big of hearts our TS children have.  They can be such loving children, and they are true blessings.  But it is important to remember that "Tourette Syndrome isn't for wimps".  Our kids really do go through a lot of pain with their experiences.  And that is exactly why we will continue to fight for awareness of what Tourette Syndrome really is.  Our kids shouldn't just feel accepted and 'normal' one week a year.  They should have that acceptance everyday, everywhere.

Spin For Kids

I know I have mentioned Camp Twitch and Shout several times in other posts, but if you aren't sure what Camp Twitch and Shout is, it's a wonderful camp experience for children with Tourette Syndrome. It's a place where my Monster Man (and now my Little Man, as well) can connect with other kids that have TS, getting a chance to feel 'normal' for a week. While I don't think that everyone should always be the same, I recognize the value of having a place where they don't feel so out of place, so alone with their daily struggles. For Monster Man, Camp Twitch and Shout has been a little slice of heaven on earth.
Camp Twitch and Shout is a camp partner of Camp Twin Lakes, a wonderful organization that offers camping experiences for children and families going through so many struggles - medically, emotionally, and more! Camp Twin Lakes depends on donations to make these great camps possible.

This October, I am heading up the Camp Twitch and Shout team for a Camp Twin Lakes fundraiser, Spin For Kids. Our team goal is to reach $5000 in donations, and I am hoping to have somewhere around 20 riders on our team. Please join us in reaching our goal. If you live in Georgia, please consider joining the Camp Twitch and Shout team. If you are unable to join the team, please consider making a donation to sponsor a rider and help our team reach (or possibly surpass!) it's goal.  You don't have to make a decision right away, as the ride isn't until October 20, but our team would appreciate you taking a moment to consider riding or sponsoring.  Thank you in advance!
 
Click Here to Donate

Please Check Out This Video

Camp Twitch and Shout - The Movie from Emmett Williams on Vimeo.

Monster Man has been telling me for quite some time now that there is a video available called 'Camp Twitch and Shout: The Movie'. He couldn't find it on YouTube, and he wasn't sure where to find it, but he knew that it existed. He has been wanting to see it ever since he first found out about it. This morning, I found the link to the video posted in a recent post on the Camp Twitch and Shout Facebook Page. The video, which is about 30 minutes long, is so much more than I expected it to be! I knew that it would explain about camp, and about how camp benefits the campers. What I didn't expect was that it would be an incredible source of information for educating others about Tourette Syndrome. Please watch the video and share it. Let's help spread awareness!

Family Camp Photos

I just realized that I never did update and tell everyone how Camp Twitch and Shout's family camp went.  I apologize for not doing so sooner.

The month of September was crazy for us.  Georgia Boy had a business trip to England, which left me home with Angel Baby, Monster Man, and Little Man for two weeks.  Family camp happened to fall during the time that he was gone, so the kids and I went to camp without him.  My mom was supposed to go with us, but she was unable to take the time off of work.  It was a great experience for the kids and I to have this extra time alone, and it gave us a fun distraction from missing their Daddy.

The camp weekend was filled with activity!  Dodgeball, kayaking, archery, wall climbing... There were so many great activities that we all got to enjoy.

Meal times were great, and they were often followed by dancing while the kids got to dress up in different costumes.

The kids were shocked that I was more than willing to dig for worms and even put them on the hooks when we went fishing.

What would a camp experience be without some s'mores?!

The group was smaller than usual, but we still had a blast.  We're already looking forward to next year's family camp!

Update on Family Camp

As you might have noticed, the widget on the side of the page ------->  has been changed to one specifically raising money for Camp Twitch and Shout.  This change has been made because we now have enough money for our family to attend Camp Twitch and Shout's family camp weekend.

We'd had a few unexpected expenses that took away the money we had saved for camp.  Georgia Boy has to travel for work soon, and he had some travel expenses that we're still waiting to be reimbursed for.  To top it off, he ended up needed both new tires on his car and a repair for a leak that made the car unsafe to drive.  It's amazing how fast something like that can hit and take away the money we'd saved up.

I originally started my fundraising specifically on GoFundMe.com.  I encountered a few problems with the links not wanting to post to that site, so I also added a wish on WishUponAHero.com to help bring in the money we needed.  We also had a garage sale to help earn what money we could to help pay for camp.  As of today, we officially have enough money to pay for family camp in full!

We do not like having to ask for help with things like this, so we have made the promise to ourselves that we will pay it forward by donating to Camp Twitch and Shout in hopes that it will help pay for another child to attend camp next summer.  To help with this, we've started a new fundraising page on GoFundMe that will allow us to take in extra donations specifically to help the camp.  When we're ready to send the funds to the camp, we can add our own to the total.

We are now looking forward both to attending family camp and to helping raise funds to help keep Camp Twitch and Shout affordable for families like ours.

A New Widget

I have added a new widget to the side of my blog.  It will be here for about the next month, when it will change to something a little different.   We're trying to save up for this year's family camp at Camp Twitch and Shout.  I don't usually like asking for help, but we've run across a slight (temporary) situation that is kind of freezing the money that we'd planned to use for family camp.  My husband is going to have to go out of town soon for work, and he's having to pay for his expenses and then be reimbursed.  This means that the money we'd planned for family camp is now going to have to be used to pay his expenses.  It was a hard decision for me, but I decided to give Gofundme.com a try.

The current widget is being used as a way to accept donations to help us with the cost of family camp.  Any help we can get with the cost of camp is very much appreciated.  Monster Man's birthday is next month, and I would love to be able to tell him for his birthday that family camp is paid for (whether by partial donations or not).  Even a small donation of around $5 will help make camp more affordable for this session.

I plan to pay the favor forward, giving money directly to the camp to help keep the costs down for next summer's campers, which brings me to the widget that I plan to replace the current widget with.  Once family camp is over, I am planning to replace the widget with another Gofundme.com widget, this time being one that will go to Camp Twitch and Shout to help other campers.

Please check out the new widget (and the one that will replace it) and, if you feel led to, please make a donation to help the camp.  Camp Twitch and Shout means so much to our family, and I am looking forward to doing my best to help the camp soon!

Camp Twin Lakes

I thought I'd post something a little different for day 5 of Tourette Syndrome Awareness Month.  I've mentioned in previous posts about Camp Twitch and Shout, the wonderful camp that Monster Man attended last summer, and that we attended as a family in the fall.  Camp Twitch and Shout is a week-long summer camp for children ages 7 to 17 that have Tourette Syndrome.  For that week, the kids are free to tic to their heart's desire.  There is no one staring at them while they twitch, no one feeling disrupted by their need to shout.  It's a special place where they can feel 100% 'normal'.  In the fall, families come together for a weekend filled with camp activities, a little bit of education for the parents, and (most importantly to us) the chance to connect with other families that know what we experience daily.

Camp Twitch and Shout is one of several wonderful camps offered through Camp Twin Lakes.  Camp Twin Lakes holds several different camps for children living with disabilities, life threatening diseases, or other challenges.  There are camps for children with Tourette Syndrome, diabetes, weight management issues, Autism spectrum disorders, developmental or intellectual disabilities, burn injuries, asthma, sickle cell disease, spina bifida, cancer, celiac disease, muscular dystrophy, juvenile arthritis, hearing impairment, brain injuries, bleeding disorders, epilepsy, amputations, and so many other situations, including some camps for children living with family members going through some of these situations.  All of these camps offer their campers a chance to connect, a chance to feel like they are truly accepted, a chance to feel like they belong.

Camp Twin Lakes is one of five organizations in the running today for a chance to win a Toyota vehicle.  Each day for 100 days, Toyota is giving away a vehicle to an organization that is trying to make a difference.  Camp Twin Lakes could really use the Toyota Tundra.  Among the many ways that the camp could benefit from having this vehicle is their newest program, Camp-To-Go, which allows Camp Twin Lakes to have camp activities in children's hospitals around Georgia.  It's such a great opportunity for children who can't make it to a camp location due to their medical needs.

Please take a few moments today to check out the Toyota 100 Cars for Good page on Facebook.  While you're there, please put in your vote to help Camp Twin Lakes be today's winner.  Voting begins at 10am Eastern time, and runs until 11:59pm.

Check-up Time

It was time for Monster Man's yearly check-up today.  In a way, he was looking forward to it because that meant he could get his physical for Camp Twitch and Shout completed, making him one step closer to the camp he loves so dearly.  All weekend, we talked about his check-up and needing to get the forms filled out for camp.  I wanted to make sure that he knew well in advance that we were going to the doctor because I know how he can get when it comes to things like doctor's visits and (dare I even say it?!) shots.  I didn't want him to feel like I'd blindsided him, taking him with no warning.  I figured if we talked about it ahead of time, he wouldn't be as anxious about it when it was actually time for the appointment.

Like even the best laid plans, my plans didn't quite work out, either.  I'd made the appointment for the middle of day, at a time when I knew that both Angel Baby and Little Man would still be in school.  With them in school, I'd be able to focus all of my attention of Monster Man.  Little Man, however, started getting sick over the weekend, and he ended up at the doctor's office right alongside his brother.  Little Man, it turned out, had bronchitis, so I was glad I decided to take him to the doctor, but it did mean I wasn't able to focus as much attention on calming Monster Man's nerves as I'd liked to.

As it turned out, Monster Man needed all the help he could get.  When we went into the first room, where he had his vision and blood pressure checked, he started getting worked up about having to have his iron level checked.  Once he found out he had to have his finger pricked, he started to melt down.  We were able to calm him down long enough to get his finger pricked and the iron tested, but that was about it.  By the time that we got into the room, he was in tears because he realized he was going to have to have shots.  I'm actually surprised that the family in the room next to us couldn't hear him raising his voice to announce that "You can give me my shots over my dead body.  You'll have to kill me first," and asking "Why can't they put me to sleep to give me my shots?"  I resorted to giving him one of his anti-histamine tablets, which we use to calm him down when his anxiety or his rage are acting up.  His pediatrician had not heard how upset he can get before, and she could hear him through the door crying that I couldn't make him take his pill and that I wasn't his boss.  Oh what fun we were already having at that point, and the doctor hadn't even walked into the room yet!

For the most part, the appointment itself went well.  Despite his anxiety level, he was able to make it through the appointment and through Little Man's appointment without losing it, right up until the moment when it was clear he couldn't hold off on getting his shots any longer.  At the point when the nurse entered the room, he started crying again, and it ended up taking another nurse holding one arm still while I held the other for the one nurse to be able to give him both of his shots.  It was only two shots, unlike the six that he just knew we were going to "kill" him by giving him.  They were over in less time than it took to give him his pill, not counting the time it took to get him under control long enough to give the shots.  It is heartbreaking to watch him fight so hard, especially since he gets so strong and hard to control!

When all was said and done, though, he looked up at the nurses and me and said "That wasn't so bad.  That was stupid."  He let me know multiple times over the next half hour that he felt really, really stupid for fighting so hard and getting so worked up.

He says that he won't be so worked up next time, but I'm not holding my breath with that one.  I've heard that from him before.  I think the anxiety he gets just builds up so much for him, and it makes the whole idea of shots seem ten times worse than they really are.

A video that explains Camp Twitch and Shout

This video was put together by one of the many inspiring girls at Camp Twitch and Shout, the wonderful camp that Monster Man attended over the summer and that our family attended for family camp a couple of weeks ago. The song playing in the background is one of the main theme songs that the kids learn at camp, R. Kelly's 'The World's Greatest'. It is such a positive message to teach these kids, that they can be what they inspire to be. The boy speaking at the end, sharing his wish for the camp, is Monster Man.

There are many great ways to help Camp Twitch and Shout, including 'Spin for Kids' and 'Denim and Pearls', as well as through the Pampered Chef fundraisers I have been holding (I will be holding another closer to Christmas). If you are interested in helping Camp Twitch and Shout, please check out the website.

Camp Twitch and Shout Family Camp

I've mentioned previously that Monster Man attended Camp Twitch and Shout over the summer, and that the camp has come to mean a lot to him and to our family as a whole.  During the weekend of September 23 - 25, we got to experience Camp Twitch and Shout as a family.

When we arrived at the camp on Friday night, we were a little nervous.  We knew we would be sharing our cabin with another family, but we didn't know who that family would be.  What would it be like to be put in a cabin with a family we didn't even know?  I guess that is what Monster Man must've felt like when we first dropped him off at camp over the summer.  

We'd barely gotten a chance to introduce ourselves to our roommates (which, thankfully, turned out to be the family of one of the boys from Monster Man's summer cabin) when it was time for dinner, followed by some get-to-know-you games and then a dodgeball tournament.

The tournament was followed by s'mores around a campfire and then bedtime.  We had to turn in early because our Saturday was packed with activities.  Shortly after our breakfast, the kids were taken off in supervised groups while the parents had some time for a quick meeting followed by some Minute-To-Win-It games.

Afterward, we had some family time.  We took a few minutes to practice some archery, and then my hubby and the kids all went either kayaking or on paddle boats.

After lunch, the kids went back in their supervised groups while the adults got to enjoy some activities without the kids.  For my hubby, this meant wall-climbing.

After a kickball game and some more family time, it was time for a cookout in the pavilion.  Angel Baby enjoyed this a lot, since she ended up dancing before dinner with some of the counselors and campers.

That night, despite the cool temps, we had a pool party and a build-your-own ice cream sundae event.  We all enjoyed both events before turning in for the night. 

Sunday morning was a little sad.  While we enjoyed the activities that were planned, we knew that our time together was coming to an end.  After breakfast, we spent some family time doing activities we enjoyed.  We spent a little time fishing, and Little Man caught his first fish.

After our family time, the families all came together for some messy olymp-tics games.  

We barely had time to clean up before it was time for lunch and then closing ceremonies.  As part of the closing ceremonies, we were asked to write our wishes for Tourette Syndrome or for Camp Twitch and Shout on a card, which we attached to a balloon and let go at the end of the ceremony.  During the closing ceremony, everyone was invited to come up on stage and share his or her wish with the other campers.  Monster Man shared his wish, that he could have camp everyday, with the crowd before we released the balloons.

We were sad to see family camp come to an end, and to have to say goodbye to all the new friends we made while we were there.  We are already looking forward to Camp Twitch and Shout's family camp next year!

Fundraiser for Camp Twitch and Shout

Camp Twitch and Shout, located at Camp Will-A-Way in Winder (in partnership with Camp Twin Lakes), is a week-long camp for children ages 7 to 17 who have Tourette Syndrome. As many of you know, Monster Man attended this camp over the summer. It did amazing things for him, helping him connect with others like himself while boosting his self-confidence. Camp Twitch and Shout has given so much to my son, and I want to help give back to the camp. More information about the camp can be found at http://www.camptwitchandsh
out.com/

From now until noon on August 31, I am hosting a fundraiser for Camp Twitch and Shout through my Pampered Chef website. Depending on the total sales, Camp Twitch and Shout will receive between 10% and 15% of the sales. In addition to the percentage, Camp Twitch and Shout will receive an additional $3 per cooking show (in the Atlanta area) or catalog show (anywhere in the U.S.) that is booked through the fundraiser. Even if you are not interested in purchasing any Pampered Chef items at this time, you can still contribute to this fundraiser either by booking a show or by passing on this information to others. Please feel free to send this invite to your family, friends, co-workers, etc so that they might be able to help raise money for Camp Twitch and Shout.

To check out the fundraiser, please visit my page at www.pamperedchef.biz/alissadorough. Once you are on the site, click on the words "Shop Now". When prompted to choose a host, you can either enter 'Camp Twitch and Shout' OR use the host name 'Twitch Shout'. This will allow you to view the catalog. If you are interested in setting up your own show to contribute the additional $3, please use the 'host a show' option to contact me. I will then be able to call you back to set up your show.

Thank you in advance for your help with this fundraiser!

Alissa Dorough - Pampered Chef Independent Consultant

www.pamperedchef.biz/alissadorough

Camp Twitch and Shout

Monster Man had the honor of attending Camp Twitch and Shout last week.  This incredible camp offers kids with Tourette Syndrome the chance to spend a week with other kids like themselves, being themselves and not having to worry about hiding their need to 'twitch and shout'.

When we first dropped Monster Man off at his camp last Sunday, we were a little concerned about how he would do.  After everything we had read about the camp, and after the wonderful tour and friendly staff, we had no concerns about it being the right place for our son, but we weren't sure if he was ready for a week away from us.  We had some many questions about how he would react being away for so long, whether or not he'd have a rage episode, if he'd try to test the limits while swimming, etc.

Thankfully, the counselors had taken the time to get to know everything that we reported might present a problem during the week.  They had come to the camp prepared for anything Monster Man might throw at them, and they did an amazing job giving him what he has told us was 'an amazing week'.

Monster Man loved the camp so much that he was in tears when I went to pick him up, sad to be leaving his new friends behind him.  He is already counting down the days until the family camp in September, as well as making plans for his trip to camp next summer.

I am so thankful that he has Camp Twitch and Shout to help him make new friends like himself and to help him discover that he isn't so different after all (and that being different is a great thing to be!).