Tourette's Syndrome

From an early age, Jazz exhibited what we started calling "ticks."  As an infant people asked us how we taught a baby how to wink.  They thought it was incredible, we thought it was sad because we knew the truth.  The movement was one she could not control and would happen constantly.  There were even times when her entire face would be scrunched up on one side and look as if it was going to be swallowed into her eye socket.  It then moved into her hands in which her hand would repeat the same motions over and over again.  There were times we would watch her hold her hand down and smack it so she could try to eat with out flipping her food into lap.  Then the vocal ticks started.  She would make the same sounds and movements with her mouth over and over until we would all have headaches.  It was years before she was diagnosed with Tourette's Syndrome.  

Here is a video to help you better understand what we were seeing in Jazz that lead us to the neurologist: http://www.youtube.com/watch?v=HPmpIY7XJVE

Now like most of America, we thought that this syndrome consisted of people blurting out cuss words uncontrolably.  However, this is not the case.  It consists of uncontrolled movement patterns and odd vocalizations, including cuss words.  However, since Jazz is missing most functions in her frontal lobe (the section of the brain that serves as our filter or judgement system), she happens to be one of those people who will cuss at any moment without thought about the context or environment she is in.  Then the Tourette's will kick in and she will get stuck on a repeat pattern of the word.

Rather than doing this when upset or surprised... 

Jazz does this... 

Needless to say, we have had some pretty awkward moments in public due to the conflict occuring between the damage in her brain due to her shaken baby syndrome and the affects of the Tourette's Syndrome.  She will scream at us calling us names if we have told her no to something she really wanted at the store, or at the dogs if they do something naughty, or one of our favorites: the stupid head incident.

Jazz was in a pre-kindergarden program when she was 5 years old.  A little boy she was playing with at recess came up to their teacher crying because Jazz had kicked him.  When asked about it, Jazz informed the teacher that, "He was a stupid head who took a toy away from her because he was a stupid head."  So, to teach him a lesson she kicked him (frontal lobe damage affect) and began calling him a stupid head over and over again (Tourette's Syndrome affect).  Both children had to apologize to each other, the boy for taking the toy and Jazz for kicking him.  Her apology was short and sweet: "I'm sorry stupid head."  The teacher had to turn away so they would not see her burst into laughter.  To this day, we all refer to people who annoy us as stupid heads.  And each time we that teacher, she still laughs and welcomes us as stupid heads.

Jazz has a lot to over come in her life and nothing has come easily to her over the years.  It seems every time we turn around, a new syndrome is bursting forth into our lives.  Despite the hard times we have all had, it is important to every once in a while not take life too seriously and to see the humor in a person following you around the house saying "sh*#" over and over again because she cannot find her favorite shirt.

Much Love!

Horses go to bed in kennels

"Sissy is it time to put the horses back in their kennels?"  This has recently become my favorite Jazz quote.  Some of our dogs sleep in kennels at night, and as we have explained to her, a kennel is like a cave for a dog and it is like having their own house.  So it was not surprising that as I was putting the horses I was volunteering with away for the night, her brain referred to the corrals as kennels.

When I was growing up, I was a competitive horse back rider in professional training for more than 10 years.  When I met Jazz, I was in high school and chasing down my dream of winning an open all around belt buckle for horsemanship and trail (both of which were against adults).  Needless to say, Jazz therefore was introduced to horses from a young age.  Since she is such an animal lover and is naturally drawn to animals, she fit right into the ranch life.  She became a celebrity as she would sit in her stroller and cheer for me.  The announcers would have her sit in the booth with them and she would clap and sing.  They even started putting a play pen up there so she could nap with them out of the sun and my parents could focus on helping me.  Jazz would sit in front of me in my saddle and clap and love on my big horse.  It is one of my fondest memories of her during infancy.

When she was old enough, we started her in lessons.  She got to participate in a therapeutic riding program that the school district was connected to.  Unfortunately, the program was finished after only a couple months because it was time for the high school to participate.  We attempted lessons with my former trainer, but it was not the easiest task teaching a small child with serious impulsivity and her horse eventually had to be retired due to his age.  So, we were once again in a rut and she was still begging us to ride.

It was a few years later, but we found out that a therapeutic riding program had moved to the ranch I had trained at.  They were so welcoming and incredible.  Jazz now rides once a week, and frequently comes with me to volunteer.  This program has been a huge blessing in so many ways.  We started the program right after she was recovering from the abuse she had suffered at school.  She was anxious, angsty, uncoordinated, flooded, and just an overall mess.  The staff were patient, caring and gentle.  They would tell me to just relax when she was starting to have a problem, and  they showered her with love no matter what.  We truly owe some of our recent successes to them.

Jazz has become more confident as she learns to control a huge animal on her own.  She has become more relaxed as she enjoys the gentle motions of the horses.  She has become more coordinated as she has been climbing trees and learning to play outside with sticks and rocks while I volunteer, something she had never had the opportunity to do.  She has become stronger as she learns how to play and do little tricks on the horses.  She has become more open to making friends as she learns to play with the other children in the program and the other volunteers.

I would highly recommend this program and others like it.  It can be life changing.  I know it has been for us and most importantly for Jazz.

Much love!

If you want more information about the program we are involved with, please visit their website: http://abopeople.org/

If you want more information about programs in general and to find one in your area, please visit: http://www.pathintl.org/

Loving her horsey she got on her 1st birthday!

Still riding her horsey at age 3

Riding "Doughboy" at age 8

Playing with "Ozzy" at age 12

Back in the saddle again (age 12)

Loving on "Squirt" while volunteering with me

Me riding at fair (age 17)

Me riding at the ranch (age 14)

Me riding at a show (age 15)

Me volunteering with "Squirt" who was just beginning to be broken and trained (age 25)