Thursday, January 15, 2015

Opening up about Tourrette's - part 2

I went to school this morning not really sure of what I would say to all these third graders. They are B's friends. Most of them have been to our house. I have known most of them for almost 4 years and wanted to believe that they would understand. I was hopeful that they would be kind and not look at B differently, but have more patience with him and his ticks. A part of me, though, was scared. I was scared that they would look at B differently. Too differently to know how to act around him anymore. I was worried that some kids would make fun of him. They are kids, and you never know how kids will respond to things.

There was a note on B's classroom door which read "we will be starting our day in Mr.s Carnahan's classroom today. please meet in her classroom." All the kids were puzzled and speculating as to why. Some of them thought they were in trouble and were quite worried. It was kind of comical actually. They all went into the classroom and Mrs. Beeler's class (B's class) sat around a table which was off to the side or stood behind it. Mrs. Carnahan told her kids to put their coats and backbpacks away and quickly sit down. She said, "Mrs. Tolman has come today to talk to us about Tourrette's Syndrom." They all sit down and stare at me with their sweet faces. I know these kids. These are good kids. I felt comfort and peace, so I began...
Who here has ever had the hiccups? (everyone raises their hands)
Who here has ever had the hiccups for so long that your throat or your tummy starts to hurt and no matter how many times you hold your breath they just will not go away? (most of them raised their hands)
Who has ever had an ich that was so awful you just had to itch it, or an itch that you couldn't reach and it drove you nuts? (everyone raised their hands)
Who here has ever had a sneeze that you felt coming and when it came you had to let it out, you could not hold it back? (everyone raised their hands)
Sometimes you can make the sneeze quieter (I demonstrate), but you still have to sneeze, right? (everyone nods their heads)
Sometimes that sneeze just comes out of no where and it's loud and forceful, right? (everyone nods, some giggle)
All of those things are muscle movements that you cannot control. You may be able to suppress them for a little while, or make them a little quieter, but you cannot control them. Our brains fire signals to our muscles and tells them to move in a certain way. Sometimes we can control those signals, like when I move my hand like this (I demonstrate), and sometimes we cannot control those signals, like when we sneeze, hiccup, or blink.

People with Tourrette's have what are called "tics". A tic is a muscle movement that they cannot control but it would be something you or I, without Tourrette's, could control.Their brains are firing too many signals telling their muscles to move in ways that the rest of us do not understand.
A very common tic is blinking. They blink a lot more than the rest of us. (several heads turn and look at B who is sitting at the table. I look to Ben too and he is looking up at me with his big dark blue eyes...blinking. I feel a lump form in my throat, but I continue on.) Sometimes they make throat noises that sound like little burps, or froggy noises, or clearing their throat, or a little cough (I demonstrate). Sometimes they have to stretch their neck muscles or arm muscles or any muscle, kind of like a yawn. We have all yawned, right? (everyone nodded) You know how a big yawn stretches your whole body, effecting almost every muscle? (everyone nodded) It is like that, they just need to stretch those muscles or move them in a certain way.

Some tics are like hiccups, they come out of no where and there is no stopping them. They just come when they come and they are done when they're done. Some tics are like a sneeze, sometimes you can feel it coming and can suppress it and make it quieter, sometimes it comes out of no where and you cannot suppress it. Some tics are like an itch, you can try to ignore it, but the longer you try to ignore it the more annoying it gets until you just have to itch it. Some tics are like a yawn, it comes from no where and it is a full body sensation. And some tics are like blinking, you don't even realize you are doing it. That is what it is like for B. B has Tourrette's.

(Now I start to cry. the principal hands me a tissue.)

However. Even though B has tourrette's and deals with ticks every day, all day. He is still such a remarkable kid. He is good at sports, at playing the piano, he is a good student, a wonderful son and sweet brother. He is a good kid.

And I think he's a good friend too.(everyone nods, they are smiling now) Who thinks B is a good friend? (everyone smiles and hands shoot up high instantly. They all look at B who is also holding his hand up. I laugh/cry. The teachers and principle are also holding their hands up. It was such a beautiful site!)

Thank you all for being such good kids and for being so kind to B. You are all good friends.
I then look to Mrs. Beeler and she tells her class to say Thank you, all the kids from both classes say thank you. Then she excuses her students to go back to their classroom. I walk out first and hold the door. The assistant is the first to walk out and she gives me a big hug and says "Thank you. NOW I understand." Then several kids give me hugs and when B walks out he gives me a super tight hug. Oh! He makes my heart melt! Then Mrs. Beeler comes out, hugs me and then proceeds to tell me that she knows what it is like to have a child who is different and how hard it is to explain to people like that. She told me about her daughter through tears. It was a beautiful moment.

They all walk to their class and I start walking to my car. The principal comes up behind me and says "Thank you so much" and gives me a big bear hug. I go to my car, cry for a few minutes, letting it all out. And then go home.

Now we wait and see how the kids respond and act around B. Now we let go and let God. I know most will be kind and caring. I hope all will. I hope they do not act any differently around him. I hope they see how amazing he is and continue to love him.

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