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!

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!

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

Dinner Last Saturday

Last Saturday after going to the zoo: Dad, Matt, Jazz, and I went out to dinner.  I thought I would share some of my favorite one liners from the evening.

My dad complained that he was the first one to start the echo game with Jazz in the car when she was a baby.  I of course argued that it was Jake and I, as was told in my blog post.  We decided the best way to handle the dispute was to ask Jazz.  It seemed perfectly logical, as it frequently does for parents, to ask a a child to recall a memory from their infancy and in her case with a brain injury.  So with joy we asked her who started the game first.  She proudly stated, "Daddy."  Then after a slight pause she turns to him and asks, "Was I right?"  We will truly never know when the game started....

After over hearing our debates about the Broncos trading Tebow for Manning and the mentioning of the Colts in this conversation, Jazz proudly announced that a colt is a baby horse.  I then explained that it is more specifically a boy baby horse.  Jazz then explained that there are two types of colts.  There are the baby horses and then there are these scary groups of people that make you do crazy things.  We all looked at her stunned for a moment.  I was the first to realize what she was talking about.  She was referring to a C-U-L-T.  A cult in Jazz language is a scary group of people that make you do crazy things.  Where she learned this word is yet another thing we will never know...

Jazz never ceases to amaze and entertain us.  Even if she is not doing it on purpose.  Hope this gave you smiles of entertainment and tears of amazement.

Much Love!

P.S. This was followed by a fun sleep over!  Something we have come to enjoy a couple times a year.  Our pets included!

The Zoo

The slumber party (Jazz, Frank, Rosie)

Movie Star

When Jazz was 4, she was in a Disney commercial.  We had been walking around a kid festival when a talent scout spotted Jazz and could not get over her zany and precocious personality.  She was asked to come in and do a brief screening.  She sang her favorite Veggie Tales song, "A Bushel and a Peck" and she was in.

The first audition she went to, she landed an agent.  Shortly after, she filmed her Disney commercial. It was a promotion for Handy Manny Man.  She also won a couple of pageants.  Unfortunately, her disability got in her way and made auditions and pageants very difficult for her.  But in her mind, she is famous and a movie star.

This belief in herself and pride in herself is something I admire about her and pray never fully leaves her.  She has had many hard times recently and her self-esteem has been dwindling.  It breaks my heart because obviously someone saw the shining star within her to make her a movie star, even if it was for just a brief moment.  No matter how short it may be, enjoy your super star moment as long as you can and let it fuel pride in yourself.

Much Love!

practicing modeling

first photo shoot

after pageant weekend

besties at pageant weekend

sleepy princess

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!