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!