No More Dairy

So for Jazz's entire life, she has always had what we fondly call a, "Watermelon Belly."  It's that cute little belly that infants and toddlers have.  Usually by the time they are school aged, it is gone.  Jazz on the other hand, never grew out of her watermelon belly.  She was by no means ever considered fat and she continued to grow at a typical pace, but for some reason she always had this little baby belly still.

Due to her birth history and TBI, Jazz has struggled with both high tone (very tight) and low tone (very weak and floppy) muscles through out her body.  Her intestinal track has always been low tone and so she has always had feeding and eating delays and many complications with digestion.  Recently she has had severe stomach aches that have lead us to numerous doctors even emergency visits.  During one of these visits the question of food allergies has come up...

Jazz has always been a picky eater and goes through phases with her food, but dairy products have always been her preferred foods.  And so it was determined that she may be allergic to everything in dairy including the proteins, not just the lactose.  Now this child lives for ice cream.  In fact she will do anything for ice cream including: lie, cheat, and steal, all of which we have caught her doing in attempts to satisfy this unending need.  We knew her stomach aches were bad when she told us she would even give up ice cream to feel better.

Sure enough less than a week into a dairy free diet (which may just may kill our mother as she seeks replacement foods for a child who barely eats anything), her watermelon belly disappeared.  It turns out that what we were seeing was a combination of swelling, and a recently diagnosed unique form of constipation.  We felt sssooo bad for her because until recently, we had no idea she was in this much pain and that her body was having this severe of a reaction.

During all of this Jazz has been a pretty good sport and has worked hard at being brave for blood tests and seeing new doctors.  After her first trip to a gastroenterologist, she told me he was the weirdest and most boring doctor she has ever seen because all he wanted to do was talk about poop all day.

It is hard when a child cannot communicate a need to you.  It is important for anyone working with special needs children to remember that sometimes behaviors or physical body changes, or in Jazz's case lack of changes, can be a sign of something wrong.

Much Love!

Tourette's Syndrome

From an early age, Jazz exhibited what we started calling "ticks."  As an infant people asked us how we taught a baby how to wink.  They thought it was incredible, we thought it was sad because we knew the truth.  The movement was one she could not control and would happen constantly.  There were even times when her entire face would be scrunched up on one side and look as if it was going to be swallowed into her eye socket.  It then moved into her hands in which her hand would repeat the same motions over and over again.  There were times we would watch her hold her hand down and smack it so she could try to eat with out flipping her food into lap.  Then the vocal ticks started.  She would make the same sounds and movements with her mouth over and over until we would all have headaches.  It was years before she was diagnosed with Tourette's Syndrome.  

Here is a video to help you better understand what we were seeing in Jazz that lead us to the neurologist: http://www.youtube.com/watch?v=HPmpIY7XJVE

Now like most of America, we thought that this syndrome consisted of people blurting out cuss words uncontrolably.  However, this is not the case.  It consists of uncontrolled movement patterns and odd vocalizations, including cuss words.  However, since Jazz is missing most functions in her frontal lobe (the section of the brain that serves as our filter or judgement system), she happens to be one of those people who will cuss at any moment without thought about the context or environment she is in.  Then the Tourette's will kick in and she will get stuck on a repeat pattern of the word.

Rather than doing this when upset or surprised... 

Jazz does this... 

Needless to say, we have had some pretty awkward moments in public due to the conflict occuring between the damage in her brain due to her shaken baby syndrome and the affects of the Tourette's Syndrome.  She will scream at us calling us names if we have told her no to something she really wanted at the store, or at the dogs if they do something naughty, or one of our favorites: the stupid head incident.

Jazz was in a pre-kindergarden program when she was 5 years old.  A little boy she was playing with at recess came up to their teacher crying because Jazz had kicked him.  When asked about it, Jazz informed the teacher that, "He was a stupid head who took a toy away from her because he was a stupid head."  So, to teach him a lesson she kicked him (frontal lobe damage affect) and began calling him a stupid head over and over again (Tourette's Syndrome affect).  Both children had to apologize to each other, the boy for taking the toy and Jazz for kicking him.  Her apology was short and sweet: "I'm sorry stupid head."  The teacher had to turn away so they would not see her burst into laughter.  To this day, we all refer to people who annoy us as stupid heads.  And each time we that teacher, she still laughs and welcomes us as stupid heads.

Jazz has a lot to over come in her life and nothing has come easily to her over the years.  It seems every time we turn around, a new syndrome is bursting forth into our lives.  Despite the hard times we have all had, it is important to every once in a while not take life too seriously and to see the humor in a person following you around the house saying "sh*#" over and over again because she cannot find her favorite shirt.

Much Love!

Horses go to bed in kennels

"Sissy is it time to put the horses back in their kennels?"  This has recently become my favorite Jazz quote.  Some of our dogs sleep in kennels at night, and as we have explained to her, a kennel is like a cave for a dog and it is like having their own house.  So it was not surprising that as I was putting the horses I was volunteering with away for the night, her brain referred to the corrals as kennels.

When I was growing up, I was a competitive horse back rider in professional training for more than 10 years.  When I met Jazz, I was in high school and chasing down my dream of winning an open all around belt buckle for horsemanship and trail (both of which were against adults).  Needless to say, Jazz therefore was introduced to horses from a young age.  Since she is such an animal lover and is naturally drawn to animals, she fit right into the ranch life.  She became a celebrity as she would sit in her stroller and cheer for me.  The announcers would have her sit in the booth with them and she would clap and sing.  They even started putting a play pen up there so she could nap with them out of the sun and my parents could focus on helping me.  Jazz would sit in front of me in my saddle and clap and love on my big horse.  It is one of my fondest memories of her during infancy.

When she was old enough, we started her in lessons.  She got to participate in a therapeutic riding program that the school district was connected to.  Unfortunately, the program was finished after only a couple months because it was time for the high school to participate.  We attempted lessons with my former trainer, but it was not the easiest task teaching a small child with serious impulsivity and her horse eventually had to be retired due to his age.  So, we were once again in a rut and she was still begging us to ride.

It was a few years later, but we found out that a therapeutic riding program had moved to the ranch I had trained at.  They were so welcoming and incredible.  Jazz now rides once a week, and frequently comes with me to volunteer.  This program has been a huge blessing in so many ways.  We started the program right after she was recovering from the abuse she had suffered at school.  She was anxious, angsty, uncoordinated, flooded, and just an overall mess.  The staff were patient, caring and gentle.  They would tell me to just relax when she was starting to have a problem, and  they showered her with love no matter what.  We truly owe some of our recent successes to them.

Jazz has become more confident as she learns to control a huge animal on her own.  She has become more relaxed as she enjoys the gentle motions of the horses.  She has become more coordinated as she has been climbing trees and learning to play outside with sticks and rocks while I volunteer, something she had never had the opportunity to do.  She has become stronger as she learns how to play and do little tricks on the horses.  She has become more open to making friends as she learns to play with the other children in the program and the other volunteers.

I would highly recommend this program and others like it.  It can be life changing.  I know it has been for us and most importantly for Jazz.

Much love!

If you want more information about the program we are involved with, please visit their website: http://abopeople.org/

If you want more information about programs in general and to find one in your area, please visit: http://www.pathintl.org/

Loving her horsey she got on her 1st birthday!

Still riding her horsey at age 3

Riding "Doughboy" at age 8

Playing with "Ozzy" at age 12

Back in the saddle again (age 12)

Loving on "Squirt" while volunteering with me

Me riding at fair (age 17)

Me riding at the ranch (age 14)

Me riding at a show (age 15)

Me volunteering with "Squirt" who was just beginning to be broken and trained (age 25)

Shea

"What is REAL?" asked the Rabbit one day, when they were lying side by side near the nursery fender, before Nana came to tidy the room. "Does it mean having things that buzz inside you and a stick-out handle?" 

"Real isn't how you are made," said the Skin Horse. "It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real." 

"Does it hurt?" asked the Rabbit. 

"Sometimes," said the Skin Horse, for he was always truthful. "When you are Real you don't mind being hurt." 

"Does it happen all at once, like being wound up," he asked, "or bit by bit?" 

"It doesn't happen all at once," said the Skin Horse. "You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are real you can't be ugly, except to people who don't understand." 

 

-Excerpt From the "Velveteen Rabbit"

When I began to write this post I decided to look at the above "Velveteen Rabbit" quote and it nearly brought me to tears.  Not only does it encompass the story of "Shea", but also the story of Jazz.  There have been times that she has been convinced that she is not a person and is not worth anything.  She even one day looked me in the eye, while at a doctor's appointment after I got hurt in the midst of one if her neuro-behavioral rages, and tearfully told me that it was time.  When I asked for what, she replied that it was time for her to be "put down" and that she was going to be brave and just let the doctor do it.  She was referring to the process in which a sick or rage filled animal is euthanized by a vet.  I still cry thinking about that statement she made.  She genuinely believed that she was not worthy of life anymore because of the mistakes she has made as a result of her TBI.

Jazz is frequently seen as "ugly" to those who do not know or understand her.  The Skin Horse in the story explained beautifully that life is not always easy and even hurts, but in the end it's worth it because of the love you receive that makes you real and understood by others.

Jazz has her own Velveteen Rabbit.  It is her stuffed puppy named, "Shea".  Shea is by all accounts real and she is a physical manifestation of the emotions within Jazz.  Shea was the first thing we ever bought for Jazz and they have inseparable ever since.  At first she was just named, "Puppy."  When Jazz was 3, she officially gave her the name, "Shea".  Shea has traveled everywhere with Jazz and has been through everything with her.  Often times Jazz would inform us that Shea was sad or angry.  Shea has been thrown, stepped on, vomited on, and loved more than any stuffy I have ever seen in my life.  Shea helped Jazz learn to express her feelings and see that no matter what happens: forgiveness is always waiting for her, even the biggest mess can be cleaned up and seem like brand new, and a hug can cure everything from a scrape to a wounded heart.

It doesn't matter how ugly a person's behaviors or words are, there is always more to the story and real emotions underneath it.  Our ability to feel and experience emotions not only makes us human, but real as well.  You cannot appreciate happiness without anger, nor joy without sadness.  At the end of our journey, we all end up with some loose joints, broken eyes, and weak skin.  However, as the old Skin Horse so wisely said, it is love that lasts the longest.  So please, never forget to love.  No one should ever miss out on the chance to become real, no matter who they are, where they came from, or what they have done.

Much Love!

Shea on their first day together

Shea a few months ago

Summer Fun

Living in Southern California has always provided us many opportunities for outdoor activities, outings, and trying new things in the summer time.  Jazz learned to swim at about 1-2 years old because she has always been drawn to water and is highly impulsive.  For safety reasons, we had to teach her early.  I thought it would be fun to put together a little collage from some of our favorite adventures over the years and a little preview of fun we have had so far this summer.  Hope it gives you ideas for your own summer fun with your kids.

Much Love!

Bike with training wheels (5yrs)

Digging for sand crabs (5yrs)

Warming up at the beach (5yrs)

Swimming Lesson fun (6yrs)

Stroke Development (6yrs)

Lake Tahoe (6yrs)

Fair (7yrs)

Swim Play Date (7yrs)

Sand people! (8yrs)

Cruise (8yrs)

Speed boat (9yrs)

Rock collecting (9yrs)

S'mores (9yrs)

Slip 'n slide (9yrs)

Skipping stones (10yrs)

Universal Studios (10yrs)

Playing catch (10yrs)

Hiking (11yrs)

Pottery (11yrs)

OC Fair (11yrs)

Kite flying (12yrs)

"We are a Pre-teen"

As a graduation gift for my cousin and I, my dad sent us to Vegas with my mom and Jazz.  You see the three oldest cousins are all girls and all of us graduated with a different degree this summer (a point our grandmother enjoyed sharing with everyone), each one two weeks apart from the other.  I got my Master's and my cousin, Betsy, who went to Vegas with us got her Bachelor's.

The graduating cousins all in Atlanta for the first graduation for Natasha (Left to right: Me with Master's, Betsy with Bachelor's, and Natasha with PhD)

The same week of my graduation, Jazz turned 12.  This meant a shared birthday and graduation party as well as attending her third graduation ceremony in a month.  We were all bracing ourselves for the worst.  Jealousy, pouting, confusion...  She was amazing.  Family who had not seen her for a year could not believe how much maturity she gained in the last year (it's amazing what can happen when you remove someone from an environment that was causing them pain). 

Birthday/Graduation cake!

Though in many ways she is still about 5 years old, she has officially become a pre-teen.  And luckily for us, she rising to the challenge with more grace than any of us could have anticipated.

While on our Vegas trip experiencing all of the new joys we have with a special needs, pre-teen, girly girl running around, my cousin wrote this song that I think appropriately sums up our weekend and the early experiences of living with a special needs pre-teen thus far.  It is sung to the toon of the original "Flipper" theme song. 

Link to the theme song just in case you need a reminder: http://www.youtube.com/watch?v=EifnM3pRLdQ

"We are a Pre-teen"

We are a pre-teen, pre-teen, no one was ready

It happened one night, right before our eyes.

We know that pre-teens, live in a mirror

Obessessed over glitter, glitter on all things.

Exploring with make-up and glittery things.

Must brush my hair now and gaze in the mirror.

Hours have gone by and no shoes have appeared

And so we will be late once again.

We are a pre-teen, pre-teen, oh no not more glitter

Your hair looks fine and the blow dryer is breaking.

We must do all things now, with no one else's help.

What were we thinking, we just weren't ready!

Much Love!

On our Vegas trip we did one of those old-time photo shoots

 

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