Friday, July 18, 2014

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.


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  2. For the record you are an amazing mom and I love your beautiful family! As to your comments of how to deal with people, I appreciate how much you have already done in the past to help even me understand. I think you approach us and just the right way, you offer any information that you have, you allow questions and you allow people to learn, and you make it seem like it's not a big deal, which it isn't! When families try and cover up situations like this it makes it seem taboo or abnormal and that causes other people to hide from the situation even more. The fact that you are so open about the syndrome and that it is clearly obvious that you all love each other so much and will protect each other so much makes it easier for other people to deal. When some families treat that person differently or when they try and cover it up makes it seem like the problem is huge and nobody else could deal with either. You don't treat it like it is a life stopping or life hindering obstacle, yes it is life-changing but that doesn't mean that it hasn't changed for the better. Because you have grown so much closer and help each other so much more other people have done the exact same with your whole family. I, for one, am I among the ranks that's love your children and will do anything we can to help them and protect them. I can't speak for everybody, because there are people out there who will never except and who will never be nice about the differences that other people have. To them I say screw it, You are no better and you are no different then the rest of this world so stop acting like you are!

    1. Thanks so much! I really appreciate your response. Its true on the outside most of the times I have this totally figured out. But, just like any parent I second guess myself every day. If I can help one person understand what my kids go through then I consider my time a success! It seems like I have helped you figure it out so I am a winner!