Passwords

Being in a family with such huge differences in ages between siblings and being in special education at school has meant that Jazz spends most of her time with adults and feeling like she has a thousand parents watching her constantly.   As you can imagine, this leads her to feeling like she has no privacy and hears "No" all day long.  And so for the last few Christmases the big requests to Santa are toys that include passwords in order to access them. 

For example, the "Monster High iCoffin" was last year's choice.  It has little video games on it and pretend text messages.  Fulfilling her other desire, which is a phone.

This year it was a "Password Journal" that opens when you give a verbal password that you get to set, so it has to be your voice that opens it not just the word.  Inside is a simple journal to write in, but it is protected by the verbal password system.

The only problem with these types of toys are the very fact that they have passwords involved.

Jazz can never remember her passwords.  Mostly due to the fact that she changes them constantly so they are a secret from all the adults around her.  Since the adults around her serve as the missing parts in her brain, when we don't know what her password is, it is a lost cause when it comes to reopening a toy.  Within an hour of getting one of these types of toys, we are all scrambling to read directions and find the reset button.  Thank God they have all had re-set buttons so far.

While the progresses that Jazz has made through out her life since her infancy have been great and beyond what anyone predicted, there are still these moments when we realize she still has many areas that are a struggle for her.  There are many reasons why she has adults with her at all times including memory problems like with the password toys, inappropriate use of toys/tools such as scissors, and many more related to being extremely impulsive.  These moments help us remember why we all still work as hard as we do for her.

Much Love!

Movie Picks

My husband Matt loves movies.  Watching them, critiquing them, and discussing them at great length are his hobby.  In fact, his friends are primarily made up of actors.  Every year he makes a list of his top 5-10 movies.  This year he included Jazz in the process, since she goes to see movies regularly with dad.  And so amidst rolls of wrapping paper, scissors, and tape two days before Christmas, we completed our lists.  Hope you enjoy the stark contrasts!

It is important to note that these list are provisional, since we have not seen every 2011 movie that we have been wanting to see yet.

Jazz's top picks out of 15:

• Monte Carlo-Deemed her ultimate favorite this year because Selena Gomez gets to play a rich and famous person (I find this horribly ironic given how famous and rich she is in real life, a fact that is obviously over Jazzy's head)).
• Beastly
• Hugo
• Mr. Popper's Penguins
• Dolphin Tale

Matt's top picks out of 32:

• Source Code- Ultimate favorite because he likes contemplative science fiction and this was a fantastic twist on an old idea.  Like a Groundhog Day with bombs (That's my husband for you, smart and witty, but still a male).
• The Ides of March
• Contagion
• Lincoln Lawyer
• Friends with Benefits

Jamie's top picks out of 34:

• We Bought a Zoo-Ultimate favorite because of the powerful emotions it invokes and the incredible production value of the film (I think my husband and his actor friends are rubbing off on me).
• Midnight in Paris
• Contagion
• X-men first class
• Friends with Benefits

We learned a lot from Jazz when doing this activity.  We found out the capacity of her memory, her ability to rank items, and had some real laughs when trying to describe movie plots to her with hopes of triggering her memory.  Hopefully it will give you some movie ideas for yourself!

Much Love!

Mungous Squail

As I'm sure you have realized, many aspects of language development have been delayed for Jazz.  One of these areas was proper annunciation after hearing a novel word. So every time we heard her struggle with a word, we got into a habit of stopping her and slowly saying the word with her one syllable at a time until she got it.  So for example, she would say "imiceimation" instead of imagination.  We would walk her through this word by saying, "i-mag-in-ation."

My brother Jake and I used to listen to Charlotte Diamond's songs and videos until they were worn out.  My mom was really excited when she could bring this childhood favorite out once again for Jazz when she was about 4 years old.  For those of who have no clue who Charlotte Diamond is, she is a child entertainer who does interactive sing-alongs on stage, video, and CD's.  Below is a clip of one of Jazzy's favorite songs.

http://www.youtube.com/watch?v=pWvOui0sfmc

We sang and listened to this one for hours...

And yet, she still could not pronounce, "Humungous Whale."  Instead it came out, "Mungous Squail."

So, Jake did what we had always done, which was to slowly walk her through the words.

"No, Jazzy, it's a: Hu-Mung-Ous Wh-Ale."

To which she replied in an offended tone, "No Jakie!  It's Mung-Ous Squ-Ail"  In the exact same slow manner as he done for her.  And how do you argue with that?

We still laugh about that one today.

Jazz is blessed with an abundance of personality that truly reflects the sparky and strong person that she is inside, that draws everyone into her.

Much Love!

The Initial Insult

I realized that I had never actually explained what happened to Jazz that gave her the severe TBI that she has.

Jazz was born to a drug addicted mother.  At birth she had meth, amphetamines, crack, marijuana, and alcohol in her system.  She experienced withdrawal symptoms until she was 8 months old and she had a "crack cry", which is the loudest high pitched sound that you can ever imagine.  She still does it today when she gets really upset.

The county had the brilliant idea of placing her and her birth mother in a mommy and me style rehab center while they were both going through withdrawals.  This was a terrible idea, especially when Jazz developed the crack cry at only a few weeks old.  During a crying fit her mother violently shook and threw her accross a room.

Never shake a baby.

Luckily, this was witnessed by someone so paramedics were immediately called and Jazz was hospitalized.  It was these emergency medical services that saved her life because most shaken babies die since they are usually just laid back in the crib where they die over night.

Jake, our brother, was playing with Jazz's foster mother's son the day she got the call about Jazz.  Her foster home was specific to medically fragile infants.  Jake was the first to meet our amazing girl.  I met her a few months later and it was love at first site.  It was the two of us who brought her home and begged mom and dad to adopt her, since she was considered un-adoptable and was going to be placed in a medical group home.  This broke our hearts, because even though she had so much wrong with her and looked terrible on paper, we could see a spark in her eyes that was just begging for the chance to prove everyone wrong.

At eight months old, Jazz was paralyzed on her right side, deaf, barely sitting, not babbling, was never going to walk, could only eat formula, and was possibly intellectually disabled.

Early intervention services, practice, and a lot of patience made her the amazing walking, talking, learning, busy bee of a girl that she is today. 

She is the reason I do what I do and my inspiration each day of my life.  Every person who has ever met her always looks at her with awe even before we tell them her story.  We have always said the child could charm a snake.  In fact at the pet store, all of the animals watch her and interact with her, including lizards!

We knew she just had that spark in her and boy were we right....

Much love!

Night. night baby bear

Trying to use the jump, jump

First steps!!!!!

Playing

First Mother's Day

Playing with snow!

Toast at my wedding this summer.  It amazed us all.  We laughed and cried.

My wedding pictures with Jazz

Santa Claus

If you have ever adopted a child or worked with an adopted child, then you know that holidays and birthdays hold a unique form of stress for the child and the family.  Both birthdays and holidays serve as a reminder of family.  For the adopted child, they serve as a reminder of the family that diserted them and that they are the odd puzzle piece in their new family's picture.  In our house, Christmas is by far the most difficult holdiay because of Santa Claus.

Santa serves as a reminder of innosence and joy at Christmas.  Santa is the first step in devleoping faith in a child.  They never actually see Santa, but if they believe in him and behave, they are rewarded with a mountain of presents.  Jesus is similar, but the gifts we recieve are abstract.  That is why Santa is an amazing stepping stone in the hearts and faith of children.

In Jazz's head, Santa is a sorcerer who judges children and punishes the wicked, terrible children.  It doesn't matter if they just had a bad day, Santa knows all and will punish them without even giving them a chance to explain.  For an adopted child with TBI who frequently has meltdowns, difficult behaviors, and hard days you can imagine the stress she is under this time of year.

We have tried everything we can think of to explain that Santa is not evil and that Jazz is an amazing and good kid, but despite our best efforts, nothing has worked.

One year, my brother and I got candy coal and we put it in dad's stocking as a joke.  A huge mistake on our part.  Jazz broke down and sobbed hysterically for daddy.  She gave him hugs and told him that she thought he was the best dad. 

Confused for Dad

We tried to explain that we put it there as a joke, but having TBI really inhibits her ability to understand humor, so she said, it wasn't funny.  It was then that we realized how much she truly believes in Santa Claus and the myths about lumps of coal versus presents.

Another Christmas she was asking us a thousand inquisitive quesitons about Santa and how he would know how much she tries to be a good girl.  My dad and I got so exhausted we said, that we know Santa and we tell him how much she tries.  She still believes this, and luckily it still comforts her.

Last year, she finally asked mom if Santa was real.  We were thrilled!  Thank God!  She will finally relax.  Mommy sat her down and explained the whole thing.  She was direct, brief, and clear in her language to ensure that Jazz understood and could process the information.  The next day, she had forgotten all of it.  It was as if the conversation never took place.  Another joy of TBI.  And this year we still have Santa.

Today she had another hard day at school.  One of her biggest hard days, though I suppose it could have been predicted because it's Friday and the last day of school before vacation and the dreaded Christmas morning.  Most of her difficulties occur at school, so there was a lot of pressure on her today.  After the string of incidents occurred, she called me sobbing.  She told me many things and mostly in a jumbled teary TBI ridden voice, but clear as daylight burst out,

"AND NOW WHAT ABOUT SANTA CLAUS?!"

I went to our old staple that daddy and I would talk to Santa Claus and tell him how hard you try and that we know you are a good girl.

I am broken-hearted right now thinking about how stressed our poor baby is and how much I know she just needs to get to Christmas morning.  Jazz is the most amazing and perfect person I have ever met and she cannot see this in herself.  Usually I have ended my posts with a fun lesson learned.  Today, I end it in prayer and ask others for their prayers so that Jazz may have a peaceful Christmas and return to school confident in herself.

That, Santa Claus, is what Jazz needs and what I want for Christmas this year.

Much Love.

Photo Montage Entitled:

"Relief on Christmas Morning"

4yrs

5yrs

6yrs

8 yrs

9 yrs

Baby red cheese

We had a recent Jazz-ism that led to a fit and lots of confusion, but also to a great story.

The last time she stayed with Matt and I we had a new type of cheese in our refrigerator (well new to her that is).  Apparently this weekend when my mom and Jazz went grocery shopping, Jazz had a serious craving for that specific type of cheese.  Of course, like always, she could not actually remember what it was called.  So she spent more than hour saying:

"I want the baby red cheese"  

"I had the baby red cheese at sissy's house and I want the baby red cheese"

"Sissy gave it to me and I liked it"

"Mom where is the baby red cheese?"

"I want the baby red cheese"

"Sissy had it at her house"

"do you know where the baby red cheese is"

"Can we go look for the baby red cheese?"

"You know the baby red cheese"

"I want the baby red cheese"

Ok, I think you get the idea.  Now since my mom didn't know this brand or type of cheese they spent a long time looking all over the store for it.  Jazz then started to melt down and flap as she got more and more agitated about mom not knowing where or what the baby red cheese was.

Finally, my mom asked for help at the deli while Jazz went back through her cycle over and over again for the lady at the deli counter.  Luckily the lady was kind enough to listen to Jazz and figured out that Jazz was asking for the miniature Babybel Cheeses!

Jazz then proceded to hug and kiss the package of cheese and once again tell the story that she ate it before at sissy's house and it is red so it's the baby red cheese and on and on and on...

The lady was even kind enough to open a whole other package of them and gave her a couple right then to eat.  As she began to eat her treasured cheese, she looked at my mom and asked, "Do you think she knows I have special needs?"  After what the lady observed, I have no doubts that she knew Jazz has special needs. 

Encouraging Jazz to advocate for herself and understand her disability is a delicate subject.  Luckily it's moments like this one that she feels like her disability can work with her/for her, even though in this case it only meant getting to have her cheese before she paid for it.  The hope is that this small moment, will carry over into larger moments of empowerment in the future.

Much love!

Autism but not

So through out our time with Jazz, we have had numerous diagnoses get tossed around.  Traumatic Brain Injury (TBI) has been the ultimate conclusion and all other diagnoses she has are related to the fact that she has a severe TBI.  One diagnosis that was tossed around numerous times by doctors and what people assume when they talk with her for a few minutes is Autism.  The unfortunate truth is that as a family, we have all come to resent Autism and the amount of attention it receives, and since she does not have autism she gets left of of many services she may qualify for.  There are times I wonder what diagnoses these Autism parents must have since they have created such a hype of attention for Autism and have been able to now create "the spectrum" in which nearly every person can fit on, but I digress.

I thought today would be a fun time to share some of our stories that have made us laugh and in the end say, well there's the "autism" again (in a joking manner since she has never been autistic)...

Jazz has always been picky about food, as my "Pickles" story illustrates.  She will go through food trends and phases in which she will only eat those foods for a while and then never eat them again, or will eat them again but years later.  During these trends she will typically only have about 5 foods, a joy as you can imagine...  We recently discovered though that she has now adopted a an odd pattern of only eating certain foods at Dad's house and certain foods at Mom's house.  She will throw a fit and have a meltdown if you mention PB&J (a fav. for a while) at mom's house.  However, I have watched her eat an entire one at dad's house without the slightest bit of fuss.  This type of food aversion is a common struggle for children with autism, and apparently TBI as well.

She will only wear soft textures, since she has aversions to certain textures.  We always dreaded taking her to department stores or anywhere with clothes, because even if she was in a stroller she would reach out and touch every piece of fabric she went by and often times wipe her face on them.  After we realized that she was trying to seek out certain textures, we started to only buy those certain fabrics in certain cuts.  AND we now find ourselves touching every piece of fabric in every store as we walk by.  Tactile sensory aversions and seekings are common in autistic children and TBI as well.  And given how much time we spend doing this now, it is contagious.

When she becomes overwhelmed or wants something she cant find she will frequently flap, hug herself, or rock herself repeating what she wants over and over and over and over and over....  When this happens in public, we get the looks like oh poor people having to deal with such a sick autistic baby... This just ticks us off because she is NOT autistic!

By the way, don't look at families like that, it is demeaning and makes them feel worse.  Instead, smile and ask if they need help.  And never talk over the person with the disability.  Talk to them.  It really makes their day because they rarely have people look them in the eye and want to talk to them.

The point of my post today was to tell a couple funny stories.  Seriously, imagine a group of adults running around a store touching every piece of fabric, and parents planning meals with completely different shopping lists, laughing is the only way to not go crazy.  But also, to encourage advocacy for TBI and the unique journey involved.  Pediatric TBI frequently gets overshadowed, ignored, and denied supports because another campaign was louder at the crucial decision making moment.

Check out these events in CA.  We will be attending one for Jazz this year.  Please join us when the time comes!
http://biacal.donordrive.com/index.cfm?fuseaction=donorDrive.eventGroup&eventGroupID=89A3A3AE-C292-13D6-017D80AE057EDD18

Much Love!

Space Man Suit

So, when I was about 7, my dad crashed his motorcycle while racing.  In the process he lost part of his middle finger on his right hand, my mom forbid him from racing, and he destroyed his motorcycle suit.  The suit has since been hanging in the garage as both a trophy and reminder why he is no longer racing.

It looks a little like this (only torn up a bit):

 

The suit has been there for Jazz's entire life and never once has she asked about it or my dad's missing finger.  Until the other night.

 Jazz asked my mom and dad while they were all in the garage working on the broken washing machine.  Out of no where Jazz asked (as is typical for her), "Why do we have a space man suit?"

All that could be done was laugh.  And then attempt to explain to Jazz what is was and why it is still hanging there.

She always sees things in the most unique ways and sees things that we don't notice most of the time.  In this sense her brain injury is a blessing to all of us because it brings such a unique view to the world.

Much Love!

Champ and Jazz

***This was a letter that I had written a couple months ago to my teachers about my experiences with Champ and Jazz.  Since this letter Champ has actually began the transition to becoming Jazz's official service dog.****

Hello,
As you know, I have been doing my independent study project on the use of Animal Assisted Therapy(AAT) within OT.  With this project I have even been using my own dogs as "subjects" while I navigate the process of having them certified through the Delta Society as therapy dogs.  They both made their LLU OT debut at the summer OT park outing, and it was very clear that they both needed more work...
My larger dog Champ can be a little skittish sometimes, but has always been drawn to children.  Especially my sister Jazz, who has special needs.  She was actually present the day Champ was brought to my house from the his foster home.  Being adopted from foster care herself, she took it upon herself to make sure he was comfortable and felt loved.  The quarter began and so they were unable to continue their visits together until this weekend.
When I came to visit this weekend, Champ was thrilled to see his Jazz again and would not let her out of his sight.  This morning when her bus came to pick her up he bolted out the door and would not come despite my best efforts at calling him (very unlike him and out of character).  He had jumped on the bus with Jazz and was determined to go with her to school. 
When I finally got him to get off the bus (I hobbled down the driveway with no brace or crutches quite a sight), he sat by the door for an hour whining and scratching (endearing but also very annoying).  I think he somehow knew that she needed him today.
Last Friday, Jazz had a very rough day at school that included breaking a desk and being held down (which we don't agree with).  Fridays tend to be a trigger for her and any time she has blow outs like this, it is on a Friday.  Today, she did not go to the same extreme, but it was still a rough and long day for her filled with screaming, angst, and exhaustion.  She would not go to bed tonight and began sobbing and could not be consoled.  She felt guilty and beside herself with sadness.
We did everything we could think of to help her sooth and calm down.  Despite our best efforts, we had no luck.  Champ kept trying to open the door and then climb on the bed.  We finally gave up and let him do what he was trying to do.  He laid across her legs to give her deep pressure and allowed her to grip and squeeze his skin and fur as she played with the feeling of it.  She was soothed in seconds and fell asleep within minutes.  She was so deeply asleep we were able to turn on a light and take a picture of it.  After he was certain she was asleep enough he got off the bed, but has returned to her room every 5-10 mins. to check on her and make sure she is still asleep.
I have never taught this dog how to do any of this.  I did not give him one cue as to what he needed to do for her.  He just naturally knew what to do when she was heightened and her brain was disregulated.
I just wanted to share this story with you after a long week of work because I found it heartwarming and validating as to why we do what we do, and who we do it for.  Research and evidenced based practice lay the ground work for the ability to introduce new treatment modalities like this one, so we can see the incredible possibility of outcomes like this one.
Happy weekend and thanks so much for all you have taught me and opened my mind up to.

Much Love!

Jazz and Champ that night:

 

 Jazz and Champ playing at the park:

Hair Pulling Madness

Jazz has a wide variety of diagnoses beyond TBI and FASD.  One of these is Trichotillomania.  In Latin, Trichotillomania literally means "Hair Pulling Madness."  People with Trich pull their hair out and then usually eat it.  They pull all types of hair from their body and will even cause themselves to go bald over night.  They find the sensation of the pulling relaxing and reduces anxiety. 

Jazz has been doing this since she was about 5.  She will pull out her hair on her head and use it as floss.  However, her eye lashes are her favorite.  She has never pulled enough hair to even cause a bald patch, but she has pulled out every single one of her eye lashes.  It is a real shame because her eyes are shockingly gorgeous and her lashes were longer/thicker than any I have ever seen, and they had a natural curl to them.  My mom and I have wished she would leave the eye lashes alone and perhaps direct her pulling attention towards her little uni-brow, but no such luck...

Since Jazz is 11, she has begun the small steps towards puberty.  This includes the thickening and darkening of body hair, plus the growth of new hair in the axillary region.  One day while shopping with my mom, which can either be a fun activity or an anxious one for Jazz, she came running up to my mom holding small hair shouting. "Guess where this one came from!" 

It was indeed an armpit hair that she had discovered while she meticulously stared at herself in one of the store mirrors (our worst nightmare as mirrors increase symptoms of Trich).  Of course my mom felt mortified as Jazz announced this to the world.  But on the bright side, it was one less difficult conversation to have about "changes" and it was hair we were going to have to carefully plan the removal of anyway, since we don't trust her with a razor.

So, next time your kid embarrasses you in public remember: They could always be running up to you with armpit hair in their hand asking you, "Guess where this one came from?!"

Much Love!

I call them pickles...

Leaving Jazz in the care of someone else has always been difficult.  Jazz is extremely impulsive and takes advantage of any little thing she can.  If we tell her she cannot have sweets like cookies or ice cream while she is with someone, she will con them into candy.  My dad always said that even if you hired the worlds best babysitter, she would convince that person to tie themselves up in the closet covered in duck tape while Jazz destroys the furniture with knives.  And the babysitter will say that it was indeed a good idea.  She is just plain hard to handle.

So needless to say, we don't leave her very often and don't get any breaks from the 24 hour supervision and care she needs.  I frequently will provide respite for my mom along with the help of my husband, Matt.  We will not only take her for an afternoon, but for a week at time whenever we can.  One of these weeks happened to be during a time when I still had to attend classes.  This meant Jazz was going to be left with my husband for a few hours.  He had handled this before so I knew it would be just fine.  It was fine, except for one small hitch when it came to snack time.

We had gone to the grocery store the day before and let her pick out all of her favorite foods, since due to sensory problems she will only have a handful of preferred foods at a time.  I put her snacks and meals for the day out and organized in the fridge before I left so Matt would have no issues feeding her.

She asked Matt for pickles at snack time.  He looked at her funny and asked if she was sure.  And she said in an agitated voice that yes she wanted pickles to eat and that she ate them all the time.  Matt checked the fridge and could not find pickles.  He told this to Jazz and she responded even more agitated saying that she knows we bought them yesterday.  "Yesterday when we were at the store!"  So, he looked again.

She then started yelling because he was not meeting her request.  This is common for her to go from 0 to 1000 in seconds if she feels like you are not hearing her or meeting her needs.  She just kept saying, "PICKLES!  I want pickles! I want pickles!  Sissy got me pickles!"

Matt was just stumped because there were no pickles anywhere in the house.  So, he decided to describe a pickle to her, since he has learned the hard way  that if you are not fluent in Jazz, then all hell can break loose.  He asked if she was indeed looking for the little green things that float in water inside a jar.  She yelled back, "NO! I WANT PICKLES!!!!!"

She came over to the fridge and pointed to the bell pepper slices I had left for her.  And Matt said, "Ooooohhhh. You want peppers?"

She sheepishly replied, "Yes I want peppers..." And then to save face said, "I call them pickles..."

We all love this story because it truly depicts everyday life in our house and the picture perfect example of pediatric TBI.  She is easily agitated, frequently has word finding problems, and has difficulty communicating her needs.  Luckily, she has a good sense of humor so Matt and her began laughing once she had her peppers and she still thinks that this story is a funny one.

Much Love!

I call them pickles...

    

Ojai Change Day

Ojai Change Day is what we call a "jazzy-ism."  When you have become proficient in speaking Jazz, then you can actually understand what she is trying to say to you or expalin to you.  I have dedicated this blog to telling the stories that my family and myself have collected over the years during our journey as we raise an adopted child with severe Traumatic Brain Injury (TBI) and Fetal Alcohol Spectrum Disorder (FASD).  My little sister is the most important person in my life and has changed my life in all ways and always for the better.  I hope you enjoy our stories as much as we have enjoyed making them with Jazz.

Now, back to my main point in today's blog about today's Jazz story.  Jazz is currently 11 years old, but is in reality only about 4 years old, so you can imagine the struggles we come across day to day.  We were driving home after dinner, and like most children, she was trying to explain to me through red eyes and deep yawns that she was not tired nor was it her bed time.  Her main argument was that due to the recent time change, it was not actually as late as it appeared to be outside.  So, while it appeared to be after 8 o'clock, it was actually only 7 o'clock according to the clock in the car.  She however, cannot put this into such clear terms and so it came out something like this:

• It looks like its like 8 but its 7 so its not my bedtime.
• you know why its different
• because of ojai change day.  its really silly that ojai does that.

In Jazz's head, the only place in the world that converts their clocks, is apparently her home town of Ojai!

She really thought that no one else had to do the same thing.  It was a moment of childhood innocence that made me so happy and peaceful to bask in.  I then explained that everyone in the US had to change their clocks and everyone in the US saw that it looked different outside after this happens.  When she asked why we had to do that, we laughed and said it's a long story.  You find that most explanations are a long story when you have a child with TBI...

My mom quickly pointed out that her funny word choices/order were not the funniest point of this story.  The funniest part was that we actually understood what she was trying to tell us even though we were only given three fragmented sentences to work with.  We are indeed fluent in Jazz.  And as you read more of these stories, you will find out exactly how important it is to be fluent in Jazz.

Much Love!