Jun 17, 2012

Sassy Boots and Jewelry

Jazz has frequently struggled with perseveration.  Perseveration is when a person has a repetitive and at times obsessive thought run through their mind and becomes a constant topic in conversation.  This has included dream houses, islands, and jewelry for Jazz.  It is exhausting for us because the topic that she is currently perseverating on, and there is always at least one, becomes the only thing she can think about or talk about.  These perseverations can last days, months, and in the case of jewelry: years.  We had no idea how to get her to let a topic go until recently.

An occupational therapist that I have come to admire for her contributions to the field is Winnie Dunn and it was her most recent contribution that helped us learn how to work through Jazz's perseverations.  Dr. Dunn has been doing research and developing a new way of evaluating and treating patients using a strengths based approach.  The primary principles of a strengths based approach include acceptance of all aspects of a person’s disability including the not so desirable aspects.  It is not simply being a “Polly-Anna” and only seeing the positive while denying the negative.  It is more than that.  It is basically stating up front, we know this person has a disability, now how do we make all aspects of this person’s disability work with us?  The example that was used in one of Dr Dunn’s presentations was in regards to a child with autism experiencing perseverations about dinosaurs.  A traditional disability focused approach would say that we need to discourage this “obsession” through a behavior modification program with rewards for choosing activities that do not have to do with dinosaurs.  The original strength approaches from the past would say, this child shows a strong level of focus, but let’s ignore the autism part and the dinosaurs.  In this new strengths based approach the dinosaurs are used as an incentive to engage the child in all parts of life.  The math assignments would be in terms of how many dinosaurs were at the watering hole versus the tree grove.  The idea is that by acknowledging all aspects of what makes the person who they are, you will make more gains in treatment and the various care givers have less stress from constantly battling the “abnormal” aspects of the person.

This approach and new way of thinking has been monumental in developing a better understanding of Jazz and how to work with her brain instead of always against it, particularly when it came to her perseverations.  For those of you who have met Jazz you know that she has a style of her own that oozes in every aspect of her clothing, hair styles, bedroom décor, and even the adjectives she uses to describe things.  And for those of you who have met or seen Dr. Dunn, you know that she too has a style all of her own, that is remarkably similar to Jazz’s.  Hence after sharing this story one year later at one of her workshops for this approach, she was appalled at the injustice that was done to Jazz in the name of cognitive rehabilitation for her perseverations.

Dr Dunn's Style

Jazz's Style













Jazz had been banned from wearing jewelry and “sassy” styled shoes to school because she reportedly carried an attitude with her around the other children.  For Jazz this was heart breaking because not only is fashion a huge area of interest for Jazz but it is also a developmentally appropriate way to relate to her peers.  And so for three years, every single morning before school was spent fighting and arguing about jewelry and the stupid school rule she hated and did not understand.  Searches and pat downs had to be performed every single morning in search for “contraband.”  One week she even took to drawing jewelry directly onto her skin with markers from head to toe.  It even included yellow splotches across her forehead, which was supposed to be a crown.  Needless to say this was exhausting for us and unbelievably frustrating from the home front.  It seemed like such a worthless and useless way to start each day with her.  

One day my mom just had it.  It was shortly after Christmas and Jazz had received some beautiful jewelry gifts that she really wanted to wear on the first day back to school after the break.  So mom said forget it and told Jazz she may wear one piece of jewelry to school.  After three successful days of wearing jewelry, she completely forgot about the jewelry and never mentioned it again, not once. 

Jazz was able to work out this three year perseveration in only three days because she felt listened to and successful.  With reasonable limits (i.e. only one piece of jewelry) and respect for her reasoning (i.e. other girls her age in the general education classrooms wear jewelry), Jazz was able to grow and mornings suddenly became more bearable. 

That is what a strengths based approach is about.  It was no longer Jazz who was perseverating.  It was the adults in her life who were perseverating on her perseverations and giving labels to a part of her brain that is never going to change.  Our perseveration became “fixing” her brain problem.  But Jazz has brain injury and always will.  That is never going to change.  However, the way in which we view her brain injury can change.  Rather than viewing it as something that is wrong with her, we can view it as what makes her unique and strong.  Jazz has high areas of interest and determination for seeing these interests through.  She also desires to be like her peers and develop areas of similarity with her peers, which is admirable considering the way most adults avoid these types of stressful situations.

When I shared this story and these concluding thoughts with everyone at the workshop, I was shocked when I received unanimous applause from my fellow attendees.  Dr. Dunn also asked me if she could use my story in her future presentations about this approach.  Needless to say, I said yes. 

Sometimes we just need to take a step back and ask ourselves, when feeling overwhelmed while working with someone with a chronic disability, “Who exactly has the disability right now?”

Much Love!

A Style of her Own Since Birth























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.

Apr 28, 2012

Mermaid Marine Biologist Shark

The other night we were out to dinner and the discussion of what Jazz was going to do in her future came up.  She stated proudly that she is going to be a mermaid who is part shark and a marine biologist.  When I asked if she was going to be a mermaid with a shark tail, she said of course not.  She stated that she is part shark because she is a mermaid, which is a fish.  Just like sharks are fish.  The marine biologist part she stated was because she would already be in the ocean as a mermaid, so of course she would study the ocean while she was down there.

Needless to say, we were all amused and amazed by this conversation.  At 5 years old, Jazz stated clearly that she was going to be a butterfly when she grew up.  Then it was a fairy.  Now, it is all about mermaids and the ocean.  I wish I could have been that creative when it came time to choose my own career.  Don't ever loose that innocence and creativity.  There are ways to incorporate it into your daily life and job.

Much Love!

Apr 19, 2012

Success of Walk for Thought

I finally have the pictures from Walk for Thought!  It was so much fun!  Poor Jazzy was recovering from Pneumonia, so she only walked a few feet before discovering a water fountain to play in with our aunt.

Pediatric brain injury is under-diagnosed in medical communities and therefore under-recognized in schools.  Jazz has frequently complained about having special needs, and that even in her special education class, there is no one like her.  It felt so great to introduce her to some of my patients from Center for Neuro Skills and show her that she is not alone.  The families were also happy to see where I was coming from in my desire to work with their loved ones.

I urge you to join us next year and to advocate for more awareness about pediatric brain injury in your schools, offices, and families.

Much Love!

Friends and Family

Giving Jazz Tunes a shout out!

Cousins!

Even Frank was sporting our team gear

Lunch Afterward

Family love!

My doll!

The whole team!

Apr 13, 2012

Disneyland

A couple weeks ago I had the pleasure of presenting at our state Occupational Therapy association's Spring Symposium about the use of Animal Assisted Therapy in OT.  I had with me a slew of handlers who helped me with the dog visitors, as well as Jazz and her best friend, who helped with handing out materials.  Their reward for being so helpful was to go to Disneyland the rest of the weekend, since the symposium was being held at one of the Disneyland hotels.

Frank and I presenting

Disneyland has been our best experience when it comes to taking Jazz to amusement parks.  All amusement parks have alternative methods of access for people with disabilities.  It is typically just entering through the exit and skipping part of the line, or coming back after a specified amount of time.  Most parks have limited accommodations because of the abuse of the system used by people renting wheelchairs.  Disneyland however, is amazing because they have a variety of "levels" that people can qualify for.  For Jazz, it is somehow the highest level they have and it causes the staff at the park to be extremely accommodating.  At parks you can, "Check-in" as traveling with someone with a disability, after which you receive a card that explains the accommodation.  At Disneyland, this card is gold.  Her entire traveling group gets to go to the front of the line with her and ride immediately.

Last time she went, she ran ahead of mom and Matt so they could not see her.  She had run to the gate that she new she was going to be allowed to enter through at the pirates ride.  When everyone caught up to her she was in the midst of asking the staff member, "I go boat? Boat? I go boat? Where?" The staff member looked terrified because here was a possible lost child who could not speak well.  My mom caught up and showed him the magic accommodations card, and he instantly softened and said, "Oooohhh, yes here you go sweetie.  Here are the boats!  Right this way!"  This was the same everywhere they went.

This time, Jazz was able to meet tons of the characters, who once again were more than charming and kind to her.  She was able to talk to them and play, just like she was in a movie with them.  She danced with them, hugged them, and in a couple cases prevented them from moving to their next point by distracting them.  Jazz's friend, is a typically developing child, who has been kind and patient with Jazz  since Kindergarten.  She enjoyed pictures, but at one point asked mom if Jazz knew that the characters weren't real?  To be honest, we have no idea if she does in those moments or not.  The bottom line, Disneyland pulls out all the stops for children with disabilities.  It makes for the most incredible memories for Jazz and for us.

Jazz frequently reminds us what it is like to be a kid.  Don't be afraid to enjoy every moment to it's fullest, even if it means someone questioning your links to reality.  The only person you have to face in the mirror at the end of the day is yourself.  Make it so you don't have to question whether or not you were true to yourself.

Much Love!


Distracting "Doug"

Phineas and Ferb Dance Party (notice the age of the other kids)


Loving on Eeyore