Conversations with Champ

If you have read my previous blog post about Champ, you know that he is a rescue dog that is transitioning to become Jazz's service dog.  Their bond has continued to grow and their daily routines have become well established.  While discussing the latest details of Jazz's entrance into puberty (another story for another day), my mom told me about a recent occurrence that is now fondly known as conversations with Champ.  During this time of day, Jazz, in an attempt to process any aspect of life she doesn't understand, will have Champ sitting in her lap while she, explains the topic to him in the same way we have done with her.  It has to be the most classic example of psychological transference I have ever heard of, and it seems to truly help her.  We also saw this behavior when she was a small child with her stuffed doggy, but I digress.

Accepting deficit is a hard and arduous process for anyone, but for a person with a brain injury, it's down right painful.  The young man that I spoke of recently, who was a dancer, just today became aware of his brain injury and what the term means.  He has been asking us for weeks why he was at CNS, and we always responded because of a brain injury.  Today, he realized that everyone around him has brain injury and the hard truth of what it implies about how his life has changed and how long he has been unaware of the change.  It all happened in the blink of an eye, just like turning on a light switch, of which none of us were prepared for. 

In the last year, Jazz has had a similar experience.  We have never hidden it from her, but have always tried to speak about it with caution, care, and respect.  She started admitting that she was "special needed" when we went to Disneyland and she could go to the front of the line unlike everyone else, and that she was always in the same classroom every year unlike her other peers.  She has now started to notice every single little part of herself that is "different" from other people, especially her peers.  This realization has been heart breaking for us because all she begs for from us is to be like everyone else.  And despite our best efforts, she just doesn't believe us when we say that everyone is different, or when we remind her that everyone in her class has similar special needs.  She is also realizing that what makes her different, is her brain injury, which in Jazz language she calls her "brain surgery."  Lord help us when she wants to know why she has her brain injury...

A great stride was made the other day in this acceptance phase when my mom was "puppy-sitting" for  a friend.  Champ has a tendency to play rough and this visiting dog cannot handle rough play.  In the midst of trying to get him to settle down, Jazz pulled him up onto her lap and explained to him that she knows it's hard for him, but he has to remember that everyone is special needed.  She continued to explain that: Champ is special needed because of his fur problem (he is missing chucks of it due to the abuse he suffered previously and the scar tissues left behind), Teton (the visiting dog) is special needed because he has bad knees, and Jazz is special needed because of her brain injury.  It was a true moment of clarity for her and ironically, explaining this to Champ seemed to help her openly explain to him about her needs.

Tonight, she pulled Champ onto her lap and explained to him that he has private parts like she does, and that he is mammal like she is, which makes them both have hair on their bodies.  This is an aspect of puberty that has not gone over so well with her as she has attempted to shave her eyebrows, pluck her pits, and cut chucks of her hair out.  But like I said, those are stories for another day.

In the mean time, remember to sit back and be thankful for every aspect that makes you who are, even if makes you "special needed."  And don't be afraid to talk over the confusing parts with your favorite furry friend.

Much Love!

The Power of Music

I am currently completing my second Level II Fieldwork for my Master's in Occupational Therapy at Centre for Neuroskills, or CNS.  This place is the leader for research and rehab after serious brain injuries have occurred.  It has been my dream for three years to be placed there for fieldwork, and I am loving every second there because I am constantly learning.  I am also having the chance to watch the brain heal one neuron at a time, like I have gotten to see with Jazz her entire life.  I wake up every day and jump out of bed because I am going to get to work with the most incredible patients in the world.

We recently had a young man come in with a brain injury story that could bring you to tears.  Everything with him has just seemed hopeless from the first moment his injury occurred.  This young man has a new baby, new marriage, and an incredible career as a dancer and when I first met him 5 weeks ago he could barely walk and the only word he could say was, "Wow."  That is until we turned on the music from one of his dance routines....

He suddenly started dancing!  The guy could barely walk and was having trouble with incontinence, but he could dance.  When I told Jazz this story, she was amazed.  And wants desperately to meet him so he can teach her how to break dance.  She was amazed to know that there were people like her in the world.

The experiences I have had with this young man have caused me to reflect back to when Jazz was a tiny infant who could barely sit up at 8 months old and could only gesture and sign to us.  Jazz used to lie in her crib and sing.  She was the happiest baby in the world every time she woke up, and every single time, she woke up with a song.

We quickly discovered that music motivated her.  All of her toys had some sort of musical component to them.  Whether it was a baby saxophone or a a musical ride on bus.

The only movies that could engage her until she about 4 were sing-a-longs or musicals.  In the cars we listened to only sing-a-longs songs and silly songs.  It was how she learned to speak, play, and relate to people.  She seems to have perfect pitch and can pick up any dance that she watches a couple times.  She could even watch a Shirley Temple movie at 2 and copy the steps in the complex tap routines.

But she is barely toilet trained, can't do buttons or zippers, eat highly textured foods, wear clothes that are not silky in texture, roller skate, ice skate, run without falling, climb through a jungle gym without falling and on and on and on......

In the car when she is overstimulated and talking without taking a breath, we turn on music and she settles down and frequently falls asleep.  When we are trying to get her to do her morning routine and she is having difficulty, we turn on the radio and suddenly she just does it perfectly.

She has recently become obsessed with writing a song.  We discovered that it has been a way for her to express herself and tell us what is going on inside of her.  She has had a very difficult year at school and we are not sure why.  It has been very concerning and we have been praying like crazy for an answer to know what will be the best thing for her right now.  Please join us in these prayers and also read below what music has most recently allowed her the ability to do.

"Turn on the switch.

No you're on my radio.

I'm in a pitch of darkness.

Write a song.

Sing along to my song of darkness.

Hey, hey, hey

Well every day, day, day

In the dark."

-Jazz's song 2012

Much Love!

For more information about CNS and brain injury in general please visit: http://www.neuroskills.com/

Dancer-Age 4

Dancer-Age 5

Dance Freinds-Age 6

Dance-Age 7

After Recital-Age 8

Free Style Dance at Sports Fest-Age 11

Scott and Hannah

Today begins what will become a series of posts dedicated to people who have become very special to our family for a variety of reasons, primarily for the kindnesses they have shown towards Jazzy.

Scott and Hannah were friends of my husband since high school.  I met them when I met Matt.  After their big move to California to pursue Hannah's dream of acting, I invited them to spend a day at the beach with my family.  We played in the sun, sand, and with all of Jazz's favorite toys...  Particularly the ones that were broken. 

Scott rescued and pieced together her long broken toys with the help of another dear friend of ours.  It was instant love in Jazz for Scott.  To this day, if there is anything that needs to be fixed, the second Scott walks in the door, she's asking him to fix it.  She also has fallen in love with his smart phone and talking his ears off.

Jazz and Scott Christmas 2011

Love for Hannah came naturally since Hannah has a naturally calm and quiet soul.  Jazz is very attracted to gentle spirited brunette women.  Jazz loves to just sit and cuddle with Hannah as they watch a movie or talk about girl things.  We are thankful for Hannah's patience, interest in Jazz's favorite topics/hobbies, and willingness to play a thousand board games over and over again to entertain Jazz.

Jazz and Hannah 2010

For Jazz, Scott and Hannah represent fun friends that she loves.  For my family they represent so much more.  There have been many moments in Jazz's life when people have judged her, treated her unfairly, called her names, ridiculed us for how we handle her, and so much more...  Scott and Hannah have always accepted her for who she is.  They have always been able to see all of her potential, like we did the first time we ever met her.  They have always been able to just love her and see the real and amazing person inside of her.

And so, thank you Scott and Hannah for always being patient and kind to Jazz and just loving her.

Much Love!

4th of July 2010

Summer 2010

4th of July 2010

Walk for Thought

Walk for Thought is an event put on by the Brain Injury Association of California.  This year will be the 5th year for this event.  The purpose of this event is to raise awareness about brain injury and funds for research, services, and education.  During March and April through out California, these walks/runs will be happening!

Last year, we had a team together and met our fundraising goal, but the event got rained out.  This year, we are back and more fueled than ever!  In fact we will be going to the same walk Center for Neuroskills, Encino is going to.  This is the neuro rehab center where I am currently doing my fieldwork.

If you are interested in joining in on this awesome event, please click on the button on the upper right section of this blog page.  Then click "join this team" on the upper right side of that page.  You can join our team as a walking member, or as a donor.  Hope you will join us!

Much Love!

Bicycle

As Jazz has been growing up there have been certain things that each of us has longed for her to be able to do because it would mean that she would have lived experiences that every child gets to experience.  For my mom, it was swimming.  Jazz officially swam at age 2.  For Jake, it was playing an instrument.  Last school year she learned to play the clarinet.  For me it was playing dolls with friends.  She started trying to do this last year, and now does it successfully.  For my husband it was playing chess, which she can now do with no cues needed for the directions of all the pieces.  And for my dad it was riding a two-wheeler bicycle all by herself.

Jazz got her fist push bike type toy when she was a year old, but she did not figure out how to ride it until she was about 19 months old.  She did not ride a tricycle successfully until she was five.  She grew out of a bike with training wheels before she had it mastered, or even had the chance to move up out of the training wheels.  This was when my dad's heart began to break, but he did not give up.

He looked on hundreds of websites to find training wheels that could tolerate larger bikes and a greater amount of weight, after the old training wheels broke on a bigger bike.  He installed the ones he ordered from the internet, and they immediately bent after one ride attempt.  Now remember that these have been breaking or bending on a child with TBI, so every time this happened, she lost her mind and her fears of bikes grew since she would inevitably end up on the ground and scraped up.

As an engineer, it drove him crazy that these products would not work and that he could not figure out how to design an adaptation to her current bike that would make it safe for her.  He figured out that she could not only not balance the bike on her own, but the way that bikes steer and turn also was confusing her.  Think about it.  When riding a bike you have to peddle (this is what took the tricycles so long),  balance, steer, watch, adjust speed, mount.... It really goes on and on when doing task analysis for this activity.

One day he tried sitting on the seat while she sat on an adapted seat he positioned her on the frame.  This worked great, except when she decided to try to put her feet down during a turn.  Once again, down she went and the screaming began not only at the bike, but at dad since it was obviously his fault (at least in her eyes) and at the ground that jumped up and tried to kill her.

She then got onto one of her small bikes that she had grown out of long ago and started walking and gliding on it.  She would push off with her feet and cruise along as mom had to chase her and hold onto the back of the bike.  If she let go, the screaming would begin.

Then in early October 2011 we went to a sports festival that is put on annually for people with a variety of disabilities.  They offer a wide variety of sports and they adapt them so every person can access them.  This year, they had adapted bikes.  For the first time ever, Jazz rode a bike.  We were crying and she was shrieking with joy.  The only thing missing, was dad.

Adapted Bike

We also had no idea how we were going to pay for such a unique piece of adapted equipment.  But the joy in her eyes and the joy in the eyes of other, made us fill out an interest form.  We were just so proud of her.

On Oct. 11 2011 Jazz went for one of her bike push and glide walks with mom and dad as part of dad's birthday celebration.  Suddenly, much to everyone's shock, she began to ride her two wheeled unadapted bike.

My dad posted the following on facebook that night:  "Thank you to everybody for sending me happy birthday wishes. The icing on my birthday cake (so to speak) was for Jazz to ride her bicycle (yes a 2 wheeler) without help for the very first time tonight!!!! What a lucky dad I am; that's for sure and for certain."

Jazz's first ever ride on a 2-wheeler captured on dad's cell phone.

She has been able to ride ever since.  And was even able to graduate up into the correct sized bike.  It was probably her success on the adapted bike that built her confidence and helped her process all the skills necessary to ride that allowed her to finally ride a bike and achieve the dream Dad had for her.

Much Love!

For more information about adapted bikes please visit Freedom Concepts: http://www.freedomconcepts.com/

For more information about the Disability Sports Festival: http://disabilitysportsfestival.org/

Resolutions

Our friend Hannah asked us shortly before New Year's if we had any resolutions when a group of us went out for dinner one night.  We all thought about it, but no one really had an answer for her.  It triggered days of me racking my brain for an answer or even a thought about this question.  Just as we reached New Year's Eve, I had my answer.  Matt also finally had an answer, and then Jazz had an answer.

On New Year's Eve we were lucky enough to have my mom and Jazzy's help as we continue to unpack our new apartment, and we also got have dinner with them at Universal City Walk.  As we waited for our dinner, Matt asked Jazz if she had a New Year's resolution.  This was followed by 30 minutes of explaining what a resolution is at which point she said, "Math."

After another 30 minutes of explaining she made a truly profound resolution that made all of us silent for a few seconds.  That is until my lovely husband asked, "And do you have any others?"  He was punished soundly of course for this.

Jazz and her best friend became obsessed with surfing this last summer, which then lead to them begging to learn to surf.  My mom said that she would be willing to take them to Jr. Life Guards training next summer so they could learn to be totally safe in the ocean and then learn to surf.  They spoke of this for weeks, but we have not heard about it since school started.  Then in her moment of brilliance on New Year's Eve, she stated that she will complete Jr. Life Guards training in the summer of 2012.

It was truly a moment of pride for us because not only did she remember this goal from the summer, but she was able to learn a new concept and apply this old idea to the new thing she learned.  Stay tuned for an update later this year on the status of this resolution.

Much Love!

Holiday Traditions

As an OT student I can't help but notice occupations that surround me.  This Christmas, I was amazed at the number of occupations that occur around our house in order to aid in Jazz having a successful Christmas.

Since Jazz was a baby, she would help me do the Christmas baking.  When she was a little baby she would sit in her high chair and watch and sing while I ran around the kitchen.  As she got bigger she would help with more and more pieces of the projects.  Eventually, it became a tradition for her best friend to join us.  They "help" with everything from pouring, to mixing, to decorating.  All of the baking gets done during the course of one day and the ways they "help" can often make for a longer day.  But it's our tradition and an important holiday occupation that I am glad she can be a part of.

Age 5 yrs

Age 6 yrs

Then there are the presents.  Santa presents are wrapped in a different color for each person so that Jazz can tell the difference between gifts.  If this is not done, she opens every person's presents.  We also make sure to get her something that her presents can go into, so she can tell where hers begin and end.  This year it was a little trunk that her dolls could go into.  In the past, we have gotten her indoor tents that she can crawl into for her presents.  We learned this the hard way when she was about two and she just began partially opening every wrapped thing she could touch.  Every year since then has been successful.  The rules about presents and wrapping has always baffled my husband Matt and my dad.  They just cannot keep track of who's presents go in what wrapping and why you have to separate Santa presents.

Presents separated by color, location, and graphic

We have to separate Santa presents from family presents because she cannot  keep track of who gave her a gift and what it was, or if she had gotten one from everybody, or if her presents to people have been opened yet.  And so we open Santa presents first thing in the morning, followed by breakfast, and then family presents.  For breakfast we have home made waffles, which is the only time each year my mom makes them.  

 

I had never really thought about the delegate dance we all do around Jazz in order to have a successful Christmas.  It's a lot of work, but in the end it pays off because we get to have fun and enjoy the day with her.  All of her anxiety has been building up since Halloween and is finally released into pure joy as new toys are explored and opened slowly throughout the day.

Much Love!