Parrot Speech

In the world of neuroscience there is a condition known as Echolalia, also known as Parrot Speech.  This is a condition in which a person cannot stop themselves from repeating what they hear said around them.  Jazz has had this condition since birth.  She has gone through different stages with it, but it is one of her symptoms that has persisted over time.

When Jazz was learning to talk my brother and I discovered that we could play a very fun game that we called echo.  It turned out that this was the first glimpse we had into the extent of the brain damage Jazz has.  However, this was also our first glimpse into how we could use this damage in a positive way. 

We discovered that she would say random words that she heard other people saying around her.  Jake and I would then start the game by saying, "Echo."  We would wait for Jazz to repeat it.  This would begin a long stream of words that we would say one at a time and wait for her echo.  We could get her to say anything from fork to kinesiology.  We learned that we should also show her or give her a visual representation of the thing we wanted her to repeat.  To this day, her primary strength is her vocabulary!  Jake and I are very proud of that...

When Jazz was about 3 years old she had a special friend from pre-school who created an Echolalic language with her.  It was the "Winnie the Pooh Yeah" language. 

They would spend hours speaking back and forth only saying, "Winnie the Pooh Yeah?"  "Yeah."  "Winnie the Pooh Winnie the Pooh Yeah."  "Yeah!" 

The teachers were exhausted by the end of a whole day of this.  I had no idea the extent of this until we saw her little friend at a restaurant one night.  They literally screamed with joy to see each other outside of school.  Despite sitting across from the restaurant from one another they were able to have their conversations the entire hour we were there through squeals, screams, and shouts of, "Winnie the Pooh Yeah."

When Jazz was in second grade with an autistic boy who would repeat the same phrases over and over and over.  And yes, it would trigger Jazz's the Echolalia.  She would be totally focused and compliant, and would be repeating his favorite phrase right after him.  Together they would be saying, "Uh-oh Blue, you fall down!"  Based on something he heard once on Blue's Clues.  Over and over and over the two of them would do this.  The teachers couldn't do much because they were still focused and working hard after all.

Today, when Jazz becomes Echolalic it's a sign that she is exhausted and it's time for her to go to bed ASAP or a sign of seizure activity.  It is interesting how this often times annoying symptom of her brain injury has turned out to be a blessing for her. 

Just remember to be thankful the next time you can get your child to consciously stop playing the obnoxious copy game.

Much Love!

Names

Like all children, Jazz developed names for all of us that we still use to this day.  The reason the names have been so important to us is because they did not come as easily to Jazz as they usually do for kids because she has special needs and she was adopted.

Jazz's first word was "DaDa."  This would seem not so impressive, except that she was deaf at the time and usually would just mutter a strings of dadadadada's...  That is until the day she named her, "DaDa."  My dad was resistant at first to falling in love with her because her adoption was not a sure thing when she was in transition to our home.  He did not want to hold her and fall in love with her just to have her get taken away from us.  However, on this day Jazz was sitting in the middle of the living room crying and happened to start saying, "DaDa?  DaDa?"  We told him she was asking for him, so we could not pick her up.  So his heart melted as he scooped her up and she stroked his goatee with a smile and said, "DaDa."

I was the next one to have a name.  She could not make her "S" sounds for a long time.  In fact, not really until Kindergarten.  I got my name the first morning that Jazz stayed over night with us.  She sat in her crib with her face pressed against the bars of the crib at about 6am calling, "Diddy?  Diddy?"  Until I opened my eyes and she squealed "Dider!"  Yes, I was "sissy" or "sister" and I still am in fact.  My husband laughs hysterically because she never uses my name, even when angry at me.  She will still yell out, "SISTER!"

Our brother was next.  He was named "Brudder" or sometimes "Dakie".  We still call him Brudder, but we have graduated to at least calling him Jakie.  When the movie Brother Bear came out, Jazz had just started to notice Disney movies.  When she saw this, we forever became members of a bear family.  Jake was "Brudder Bear."  Dad was "Daddy Bear".  I was "Sissy Bear" and mom is "Mama Bear."  Jazz has fondly been known as "Baby Bear".

Mom was the last person to have a name and it was a long time before Jazz finally called her "MaMa".  It was actually during a period when mom was away for just one or two nights.  Jazz got nervous because she could not find her and started asking us "Er MaMa go?"  Children who have been in foster care and/or have suffered abuse frequently develop attachment disorders, especially with mothers.  There is a frequently used term to describe the phenomenon as the "Primal Wound".  The person who is supposed to care for and keep them safe, has not done so and it permanently leaves a scar on their brain and affects the way they develop attachments through out their lives.  It was hard on my mom to not have a name and she would sit up late into the night rocking Jazz to sleep and telling her that she was safe and going to be ok now.  She is now the person that Jazz is closest to.  She and my mom worked hard for the name, "MaMa" but it has been worth the wait for them both.

It is interesting to look back at all the various nick names and pet names you will have through out your life.  For me, the greatest name I have ever received was, "Diddy".  Even if it was painfully early in the morning and was abruptly followed by, "Ake Up!"

Much Love!

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