Public Service Announcement

After our cute little tic that disrupted our announcements in church. I texted our Bishop and we decided it was time for a public service announcement on Tourette.
The one I have given in the past goes as follows:

Tourette's Syndrome is a neurological condition that causes a chemical imbalance in the brain, our brain releases chemicals to tell us to move or speak, People with Tourette have an excess of these chemicals. this causes a tic. A tic is a sudden rapid recurrent stereotypical motor or vocal involvement… or in lay mans terms a movement or sound that your body makes that you cannot control.

There are 3 different kinds of tics,

Vocal Tics sneezing Sniffing and Monkey mans Singing (Coprolalia)

Motor Tics jumping, clapping, facial movements any movement that your body can make

and Tics of the mind (which is kind of like OCD)

What does this mean to you and me?

well for me, I have 3 kids with Tourette Syndrome, that just means that my life at home just got a lot more exciting. my kids are just like everyone elses, they make me Happy, Proud, Sad, Worried, just like everyone elses kids, but my kids also make weird noises, jerky crazy movements, and some times say Social Inappropriate words. But, I Love them even with all the “Tourette Craziness”

I know that Heavenly Father has blessed our family with Tourette, we have become a stronger family. one who has empathy for each other, and others. I am thankful for our ability to cope with this disorder that affects every aspect of our lives. even church

What does this mean to you?

That you guys get to go on this fantastic ride with us, when you are in church or other social interactions with our kids you may get to see the effects of Tourette, You may hear monkey man’s silly words, or see Baby Mermaids crazy faces… do we expect you to not jump in surprise? no, because we still do that, but we would like understanding. that our kids reverent behaviors may look different than yours..

I think in the past this has gone over pretty well. There are a few things that are a bit "controversial" and I will explain why I say these things.

The first thing that the Tourette community shys away from is the tic of Coprolalia. Why do we shy away from this? Because, traditionally everything you see about tourette includes coprolalia, when ever you see it in a movie, or you say my kids have Tourette, the first thing people think is that your kids are going to swear all the time. The fact of tourette truth is that only 10% of the Tourette population have Coprolalia. The reason why I explain that is because Book Worm has Coprolalia. Fun times.

The second thing that I usually get slack from is the use of the term "blessed our family with Tourette"  as far as I am concerned Tourette is NOT a blessing. If I thought it would do any good, I would pout an cry and ask for it to be taken away. But as it is not going anywhere, (as far as I can see in the predictable future) and it is something that will affect our family as far as the eye can see. I have to see the positive affects that Tourette has on my life. I truly do believe that the people that we have met are Amazing people. People who are strong in the face of adversity. Who do amazing things with an incredibly difficult disorder. People who inspire me. also that we have become a more empathetic family. We care about other peoples struggles, not just ourselves. We have become more protective, and kinder to each other, and we have learned to love each other even in hard situations. Are we perfect...Heavens NO!  anyone who lives by us will probably tell you quite the opposite. bet we are working on becoming better.

The third thing that I am needing your help with is because people say that I need more of a call to action. what things in particular do I want people to do? How can they help my kids?  What does the kind of help I am looking for look like? I am a crier, just putting it out there. So by the time I am done reading this the tears will be flowing. I need some concise points added of what things help. I'm really good at telling about Tourette, how I feel about Tourette, how we deal with Tourette. But telling others how to deal with it is hard for me!  So any help would be appreciated.

Tourette and Church. need I say more

So, Since I have only had 6 posts up to this point, and our tourette life goes back 4 years, you are missing a lot of info! Baby Mermaid was our first Diagnosed child with Tourette. Then Brian, My DH was self diagnosed. Which, in our tourette circles means that he has all the requirements for a tourette diagnosis, but why bother...(he is an old man). Then our sweet Monkey Man was diagnosed, We are LUCKY with Baby Mermaid because she just has Tourette, none of the comorbid disorders that go along with it. Monkey Man has the Tri-taverate of Tourettes, Anxiety, OCD, ADHD, He also has been diagnosed with executive Dysfunction. Then we were blindsided with a Diagnosis for Book Worm. wow! that is a lot of info in one paragraph!
Needless to say we have been doing a lot of Tourette. Its kind of a big deal at our house where 4 of the 6 have tics. I Have a friend through the Tourette Syndrome association named Whitney Fits-Flygare. She says if you have seen one kid with Tourette, you have seen one kid with Tourette. Meaning that Tourette looks different in everyone, and everyone needs different things when it comes to tourettes. Baby Mermaid has lots of physical tic's and needs very little advocation on my part. She is really good at explaining and people not having a problem with it. Yes some times she runs into problems, but she knows that I am in her corner. all she has to do is give a yell and I come running. Monkey Man is way more vocal in his tic's. He is still having a hard time standing up and explaining, and we have run into the problem of people not believing him. Our new ward (congregation) Is really great. but its always changing. Today in the middle of announcements he dropped the dirk...

Now this was exciting because we had a lot of visitors there! and lots of them didn't even know that he has Tourette, let alone why this kid is singing out in the middle of church! I would love to end this story with I just sat there and smiled and totally supported my kid. But lets get real, its loud! It echoed through out the chapel, People looked, I turned red. But I think its O.K. My kid didn't see my face, my kid just saw my fist come up for a fist bump and I put my arm around him and gave him a kiss on the forehead. I love this kid! and I hope he felt that, and I hope he knows how much I respect him for being true to himself!

A new start

When I started this blog I wanted to share with everyone my struggles as a parent with a child with Tourette. Man that is a mouth full. I know when we first got diagnosed, I goggled Tourettes and all I got was scary stuff of how my life was ultimately going to suck, and change, and be hard. I cried a bunch. Lets admit it thats a perfectly good response. I'm not a bad mom for that reaction. Even though at the time it felt wrong. but everyone goes through a mourning period for the change in your kids life. But as life went on and things got better I thought. I have a great Idea! I will have a blog that shows how life is hard, but fun, and manageable with all this Tourette fun! SO I started the blog with great intentions of posting our everyday triumphs, challenges, heartache, all that everyday stuff. but it all felt so mundane and I felt so inadequate in telling my story. but lately I have been thinking that that is exactly why I started this blog. The story of an inadequate mom, telling her story, which isn't big and exciting, just an real life account of one family's boring everyday life with Tourette. so if you will stick with me, and my just everyday mom-ness. We can enjoy the journey together!

Small Victories!

So yesterday we had a small victory! It seems small and unimportant, but I…. on with my story before my tears start again. Baby Mermaid won the quiet game! I know I didn’t even think about the quiet game when she got diagnosed. It seems so inconsequential, but to a 9 year old its everything! With her tic’s being crazy high the last couple of days, (thanksgiving was a dinner and coughing!) I asked her how she controlled her tic’s. She told me that in her class at school they have made a new rule! The only sounds that you can make are breathing and coughing! Even now as I think of this awesome teacher (who in my opinion should get teacher of the year!) and her love for my child, who understands the importance of small happinesses. So any way, life goes on. Things will be o.k. but for now, Things are great!

Just a little struggle!

K I just have to rant and ask for advice! One of Baby Mermaids tics is coughing. When we were first diagnosed with Tourettes I was relived that we had such easy tics and really they are, I don’t want to sound ungrateful because I am really thankful for the smallness of our tics.

However, I have noticed that when we go out to big events, especially if food is being served I start getting the “How could you bring your daughter to this party and let her cough on everything when she is soooo sick” We stress to her the importance of covering her mouth, but still people get visibly upset, I even had an adult cough back at her in her face! I was so upset but I didn’t say anything there because I knew the lady quite well and I would have never wanted to embarrass her in public, but then on the same had do I want my daughter to be embarrassed? Any advice would be great for me to know what to do!

Also on the same note I had some really cute shirts made up and she LOVES them! the first one is…

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The second one is more to do with the coughing! Its a line from Pride and Prejudice! My favorite Jane Austin movie/book! but its not quite done yet so I will post pictures when it comes! by the way, give credit where credit is due! I got these cute shirts from Stitcheroos! Adrienne is great and works really hard to get you just what you need! She ROCKS!!!

Thanks

Heather

Telling Her Class

So, This week Baby Mermaid gave a presentation about Tourettes to her class. I was really nervous but we had practiced and gotten a power point ready for her. I was so proud that she got up and told everyone how things worked in her brain and everything, SHE DID A GREAT JOB!!!! Here is her talk! We got part of it from http://tskids4.tripod.com/TS1.htm

 

First, let’s talk about the brain. We all know that our brains are kept in our heads. Did you also know that the brain is kind of the BOSS of your whole body? The brain has to keep track of what every other part is doing and then try to fix it if a part isn’t doing what it’s supposed to do. If you want your hand to move over and pick up a glass of juice, it’s your brain that is in control of every movement that is needed to get that juice into your hand. But your brain is also responsible for things you don’t even pay attention to. Did you know that when you’re reaching for that glass of juice, your brain is also talking to the muscles in your legs and waist, making them move ‘just right’ so that when you do reach out for the glass, you don’t fall over? I’ll bet you didn’t even think of that!

So, I’ll bet if you try to think of all the things the brain has to pay attention to, you can imagine that it is very, very busy! Since the brain is so busy, it has helpers. You can think of these helpers as little messengers. The messengers carry the brain’s message to the right part of the body. For example, if the brain decides it’s time for the toes to wiggle, it tells a messenger “Hey, go tell those toes to start wiggling!”.

Sometimes people are born with TOO MANY messengers. After all the messengers have been assigned their job, there's a bunch of these messengers left over. They want to help too, but the brain says 'No, I've already got enough helpers. Go sit yourselves in the corner over there and occupy yourselves and stay out of our way."

Well, of course, the extra-messengers soon get bored and angry and decide they're going to help whether the brain likes it or not. So THEY start telling different parts of the body to do stuff. Now, these parts don't know there are extra messengers. They just know that when they're told to do something, they do it EVEN IF THE OWNER OF THE BODY DOESN'T WANT THAT PART TO DO IT.

If you don’t believe me, try to not blink as long as possible. Pretty soon the brain will decide it's time to blink and send down a messenger. The poor eye will be confused.

"Here's the kid I belong to telling me not to blink, but at the same time, here's one of the brain's messengers telling me that I HAVE TO blink. Well, I better listen to the messenger before the brain gets mad at me!"

So then, of course, your eye will blink because it thinks it’s doing what the brain tells it to do.

There’s a lot of silly things these extra messengers make me do. Most the time they make me cough, but sometimes I blink my eyes or clear my throat.

Now I want you to hold on to this candy and don’t think about it, just hold it in your hand, don’t think about how yummy it is…That’s how Tourettes is for me, when I try not to cough it makes my brain think about it more. Just like when you try not to think about the candy, your brain thinks about it more

Then she answered questions from the class and had a good time. I think that is one of the hardest things is just telling EVERYONE, It seems like every time we feel like we are just about over telling and getting on with our lives we have to tell someone else! I just face booked it to the world. I know that sounds insensitive but it was easier than telling everyone personally. well just my two cents!

Heather

What?????

I guess that it is best to start at the beginning! Well the beginning of our journey of Tourettes! It all started a year ago when Baby Mermaid got her glasses, I started to notice some eye twitching...blinking...face scrunching, I thought that her glasses must not be the right prescription or some such problem and we went back to the eye doctor. The doctor assured me that everything was fine with her eyes, and that the cause of the eye blinking was dry eye. We got our nifty little eye drops and off we went, but right then and there I KNEW that the problem was not dry eye. Well her eyes kept blinking and we kept putting drops in until the eye drops were gone and then we just dealt with the blinking. but as school was getting out this spring she started to sniff her nose, and then as the summer started she was clearing her throat and kind of growling. well, I had started to notice that the sniffing/blinking/growling was worse when she was stressed out so I took her into our pediatrician and told him what was going on and he said that he would recommend a psychiatrist to take her into, Next thing I knew we were sitting on a couch talking to a wonderful lady about the stress that was causing my 8 year old to growl. The whole time Baby Mermaid keeps telling me that this has nothing to do with stress. Then we went on our big family vacation to Washington D.C. Her Tic changed to coughing and I realized that my daughter was right, this problem was not stress it was something else entirely! Nothing like spending 3 days solid in a car with your family to notice a continual cough! So as we coughed our way threw the nations capitol, trying everything we could think of to stop her from coughing, until she told me that when she tries really hard not to cough she felt like she was going to throw up. At this point I put my arm around my daughter and told her to cough away! If you feel like you need to cough go for it!
So we get back from vacation and I tell the psychiatrist that it is indeed as Baby Mermaid has suggested and not a stress thing at all. we both leave our appointment Baffled about this problem. But as I lay in bed that night crying and praying for an answer I remembered a little girl that was in our theater group about 10-15 years ago who did the same face scrunching (that Baby Mermaid had started out with) that had Tourettes, So with this new in site I went to our doctors office prepared the next week, I told her that I was thinking it was Tourettes and she said that she thought the same thing. I left for the two of them to talk and went into the waiting room full of anxiety and fear, I felt like it was the end of the world. I guess that when you learn that your child's life is not going to be exactly what you think and as easy as you hope it would be, Your whole world seems to fall in on you. My DH was working swings and just getting ready to go in to work, So I texted him "They Think she has Tourettes, talk to you when I get home hopefully" waited for my daughter to come out with some tests (you know the ones, how often does your child soil themselves, and How often does your child think about death) Just to make sure it wasn't some other problem, and some info on Tourettes, and off we went!
We arrived home with enough time to give my DH a hug and off he went to work. That may have been the longest night in my life. I was devastated, and my best friend was not available to talk to and cry to. Thankfully my second best friend (my mom) lives less than a mile away and she came and we talked for a while, Then I went to work reading all the info that I had gotten. As I was reading (and crying) Baby Mermaid came up and climbed on my lap and asked me if she could read with me, I said sure and as we read the information, I knew and she knew that this is what we were dealing with! In fact she asked me if that's why she had to cough all the time. I hesitated and then said "We think so" and she was like "O.K. that makes sense." and off we went on our crazy ride called Tourettes