Wednesday, February 29, 2012

I have Tourette's, big deal!

To our family, Tourette Syndrome isn't a big deal.  To the outside world, it's like a scary disease.    People are scared of what they don't know.  So our hope is to educate as many people as we can.  Here is Carson's story.

Carson was diagnosed 7 years ago with Tourette Syndrome.  A genetic disorder that he inherited from his mothers side of the family.  It started with throat clearing and licking his shoulder.  I took him to the doctor on three separte occasions to see if he was getting sick, but after 3 times of hearing he's not sick, the doctor said, but I think he might have TS.  We were then sent to a specialist who informed us that he had to have ticks for more than a year before he could officially be diagnosed with TS.  We tried several different drugs and went to therapists to help control his ticks, but nothing worked.  The meds made it so much worse.  We opted to deal with the ticks and learn to control them ourselves.  We looked up everything we could on the internet and learned as much as we could about TS.  In doing so I learned that I too have (unofficially)TS and Carson's uncle. 

Over the years we have learned that when he experiences any kind of strong emotion, like anger, excitement, anxiety, sadness, happiness, scared, depressed, stress, fatigue, etc,  that his ticks are worse.  We have also learned what calms him down or ever takes the ticks away, like, using his hands.  Drawing, origami, video games-these tend to calm him.   There is still so much that we are learning and so much more we need to do, but for now we are taking it one day, one step at a time.

We were told that Carson's ticks will continue to get worse until he hits puberty, at which point they will level off, get better, or possibly go away.  Right before this happens, there is a calm where you think its gone or gotten better, and then it comes back with a vengence.  I really hope that we are at that stage because the ticks that he is experiencing right now are really bad.  At times he looks like he is having a seizure because his whole body is ticking so badly.  He kept falling off his chair the other day and finally had to lay on the ground to avoid hurting himself because the ticks were so bad.

The last 2 years have been the hardest for him.  Because of his Tourette's, he has been the victim of bullying.  we are considering pulling him out of school. I am worried about his self esteem and his emotional state. He is a good kid with a heart of gold. If only his fellow classmates could see what the rest of us already know about him. My heart breaks for him. It's almost more painful being the parent. We have to carry the pain of our children and our own pain. 

We need to teach our children that we are all children or our Heavenly Father and He loves each of us very much no matter our differences.

If anyone is interested in learning more about Tourette Syndrome, please go to their website at, www.tsa-usa.org We are so grateful for the love and support we have from all of our family and friends.  We love you.

Tuesday, February 28, 2012

Busy December

It seems like as soon as Thanksgiving hits, December has come and gone in a flash.  My Brother and Sister in law came to visit us at the first of the month which was so much fun.  Aaron helped the boys with their new leather making kits that my mom had sent them for their birthdays.  It was so cute watching them all concentrating so hard and having fun.

Don't you just love the red mustache?
And this goofball is my baby brother.

Milan celebrated his 40th birthday this year, he told me I wasn't allowed to throw him a birthday party to celebrate the occassion.  So I waited until after christmas and had a double surprise birthday party with one of his friends.  My friend and I told our husbands that it was a party for the other so they wouldn't figure it out.  The funniest part was when we got to the bowling alley, they went up and wished the other one a happy birthday and then they were both confused.  It was great.

After Milan's birthday, we have both boys birthdays.  It sure makes for a CRAZY month.  3 birthdays and Christmas.  But it's also alot of fun.

The boys wanted donuts instead of cake for their birthdays.

Ethan wanted this wand so bad, he was even saving his money to buy it.

Carson is our little movie maker.

CHRISTMAS DAY!!! 
Payton loves her daddys mini cooper, so for christmas she got her own.


Payton got dress ups for christmas and daddy had to try them out.  (He's gonna hate me for posting this picture of him)

Christmas outfits 




Elder Taylor even enjoyed the dress ups too!