May 17, 2012

Miss Amazing

A couple weeks ago Jazz made her grand re-appearance into the pageant world by participating in the first annual Southern California Miss Amazing Pageant.  This is a pageant program that was created by a former pageant queen, who wanted to introduce the world to pageants catered to girls of all abilities.  The contestants were girls of all ages with all different types of "disabilities."  Except for this one day, where they got to just be beautiful and talented young women for their families.

The first part of the day was a workshop type of experience in which each contestant was paired with a partner of a similar age who was a typically developing beauty queen from other pageant circles.  This girl served as the coach and buddy for the contestant, a brilliant idea for our girls because they are always having to be bossed around by grown ups.  This way, they just felt like a kid playing with new friends.

Through out the day all we heard from Jazz was, "I'm having so much fun!" and, "This is the best day ever!"  Given all the hard stuff Jazz has been through lately, this brought warmth, relief, and joy to our hearts.

The second part of the day was the actual pageant.  This was awesome to watch the girls perform their unique talent routines that each of them had created on their own, as well as perform introductions for themselves on the stage.  Earlier in the day, they had to perform individual interviews with 3 different judges!  It was a day filled with triumph as the girls learned how to hold themselves with confidence and command respect from everyone, despite whatever challenges they have in everyday life.

Each of the contestants was awarded an individual title, and watching them receive their crowns and sashes was amazing.  They all beamed with pride and got so excited when they heard that they won.  Jazz was crowned California Miss Amazing Pre-Teen 2012.  She will have the opportunity to attend various events through out the year with this title, including parades, volunteer activities, and more.

Say what you will about pageants, but this day was about breaking barriers that we have been fighting her entire life.  Watching her joy and excitement through out the day also brought us a sense of relief about what the future holds for our truly amazing girl.

Much Love!

For more information about Miss Amazing please visit: http://www.missamazingpageant.com/
The interview portion where Jazz introduced herself stating that this was her return to her pageant career. (one of the judges told me this after falling in love with her)

Jazz and her buddy

All of the girls during their grand entrance

Proud Daddy

California Miss Amazing Pre-Teen 2012

New Friend

New friend and incredible young lady

Jazz's amazing coach and buddy, who is an admirable little girl for her kindness and personal talents

May 14, 2012

Am I Expelled?


Every three years students in special education are re-evaluated to ensure they still qualify to receive this type of school-based services.  This is called their “tri-annual” review.  During Jazz’s initial qualifying testing period, we were introduced to the practice of neuropsychology, which is a combination of the study of neuroscience and psychology.  Typically in neuroscience, there is an emphasis on the physical nature and matter of the brain; whereas psychology is made up of the mind.  Neuropsychology combines these ideas and creates a truly unique area of specialization that allows for access of mapping the brain and how it functions.  In MRI scans, Jazz’s brain looks intact.  In psychological assessments, Jazz looks slightly mentally disturbed.  In neuro-psychological assessments, evaluations, and mapping Jazz’s brains look likes Swiss cheese and is a textbook case of TBI. 


The initial neuropsych report we received was a huge help and resource to everyone who works with Jazz.  And so, we once again requested that the same person, Christina Aguirre, complete the testing since we have come once again to her tri-annual review year. 

The first time it took Jazz about 2 months to do the testing and it was never completely finished.  She would see Christina once a week for this.  This time, we could not do this same arrangement, so we had to set it up for an entire weekend, beginning on a Friday afternoon and finishing on a Sunday afternoon. 

After an incredible start on Friday afternoon, Jazz asked me as we drove home, “Sissy, am I expelled?”  I was stunned.  I had no idea that she was still holding onto so much pain from leaving school after the last incident of her being abused and hurt at school.  She actually thought it was her fault as to why she has not been back to school.  I proceeded to explain to her that it doesn’t matter what is going on in the moment, adults never get to hurt children and that children with serious pneumonia don’t go to school.  I also explained that the grown ups in her life were finally listening to her.  She had been crying everyday before school and begging us to not make her go back to school.  It makes me sick and sad that we never understood the reason for this amount of distress regarding school. 


She did not say much, but the results of our conversation spoke for themselves the next day as she attacked the tests, which she thought were a punishment for her and part of being expelled.  She finished every single last test in an 8-hour day.  When offered breaks or the ability to be done for the day, she would say, “No, I can do this.”  This child was accused of the inability to work with educators, focus for extended periods of time, and generally being difficult to work with.  Well, if I was seen that way and was being abused by the adults I am stuck in a room with for 6 hours a day, I too would probably seem like I was a difficult person to teach.  However, when empowered and directed properly, as Christina has always done, she was able to accomplish more in 8 hours than most people do in a 40-hour workweek.

Never be afraid to listen to and trust your child, especially a special needs one.  It can mean the difference between a life of happiness or a life of despair for them.  I wish I had listened to Jazz sooner about how unhappy she was at school and trusted her stories, despite the broken and exaggerated nature of them.  When Jazz completed her extensive testing with Christina it was as of she had said, “Take that brain injury and all you doubters of my abilities in the world!”  We are truly proud of her.

Much Love!


May 8, 2012

School

As I have eluded to in other posts, Jazz has had a rough year when it comes to school.  It has now come to her having a unique program designed just for her within the home.  She became so stressed and anxious about what was happening to her at school, that her physical health deteriorated and she came down with pneumonia for a month.  She was coming home with bruises from the adults within the classroom who would perform "holds," aka: physical restraints on her, without our consent nor with proper training.  Our last straw came when she cried out to her doctor, "They hurt me!" and revealed bruises on her chest and arms.  She also had one on the back of her neck.  This was from a restraint performed on concrete by three adults, two of which were not trained.  In the midst of telling the doctor and mom this, she turned white and with a look of shock, she panicked and said, "I'm going to get in trouble!  I can't tell you this!"

Needless to say, this was the point at which I took her to the police and she has not returned to school.  And so I sit here typing as I watch her performing unique school tasks with myself and her behavioral aid on our living room floor.    We have not been able to do any tasks related to her previous books from her classroom, because she has panic attacks if anything from her classroom has been brought into the house.  Therefore we have had to get really creative in what we use to address the curriculum.  For example, we made a solar system model out of cake, a bracelet that represents the water cycle, our own book of revolutionary war facts and figures, and much more.  She has also been able to start therapeutic horseback riding with great success and passion.

These last couple months have been exhausting, draining, hard, and one of the most rewarding periods of growth for Jazz that we had not seen for a long time.  Her physical health has improved beyond anything she had before.  Things about her health that we just assumed were part of the brain injury, (ie digestive health) have even shown vast improvement.  We have learned so much about what makes her who she is, what she loves, as well as what drives her passion.  She is also happy everyday and finally retaining knowledge!  She had slipped back to math skills of a second grader and had no clue what she had been learning in other subjects.  Now she can recite the water cycle, recall math facts, and is enjoying physical activities outdoors!  (she was not being allowed to go outside and play)

Blessings in disguise, has been my mantra during these last couple of months.  We have had a lot of issues to deal with as adults, but when we get down to her level, we see this is the best way to be a kid right now.  Especially since this kid has had more to deal with in 11 years, than most people have in a life time.  More stories and updates will be coming soon...

Much Love!

Solar System Cake

Solar system!

Sensory project in which we made the surface of Mars

Hanging out with Ozzy

Back in the saddle and so happy

Fell asleep right  in the middle of playing.  We had not seen her play in months due to anxiety and depression.

First morning that she excitedly began work with her aid the second she walked in the door.