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