Wednesday, September 26, 2012
Saturday, September 22, 2012
Saturday is a Special Day
Today one of Whitney's previous classroom aids came to watch Whitney at cheer practice. Before I put Whitney to bed she signed, "Whitney is happy when she sees Mary. What made Mom happy when she was a little kid?" Thanks Mary, for making Whitney happy today.
Later, I took a 20 minute nap while Jeff watched Whitney. Amazing what a girl can do in 20
minutes. She had colored blue feet on about
100 3x5 cards, and strategically placed them throughout our hallway. She even taped one on my bedroom door. I asked her what all of that was and she said
that it was Blues clues walking. Whitney
used to cry whenever we would work on handwriting or even coloring as she has difficulty with her fine motor skills. I think I will leave them out all
weekend. They make me smile.
Wednesday, September 19, 2012
Witty Whitney
Our amazing daughter Whitney has CHARGE syndrome. Despite countless surgeries and many disabilities, she seems to go through life making people smile (even when it is often embarrassing). This blog is a collection of "Whitney stories", devoted to bringing her amazing personality to anyone who needs to smile.
This is only the Beginning
:
This year we started Whitney in a competitive cheer team for
special needs. She loves to go each
Saturday. After she completes a cheer or
does a pose she signs, “I’m a big girl”.
They each have a teen helper to keep them on task and show them what to
do. Last week she grabbed the end of her
helper’s long braid and tickled both of her own armpits with it. This is how Whitney makes people smile and
sometimes causes embarrassment to Jeff and I.
We have a lovely home teacher from church. He is always sweet to Whitney. He lets her wear his tie whenever he comes
over and he is always friendly to her.
She unfortunately loves his bald head.
He graciously bends his head down and lets her rub it as he know that
she can’t help herself. Last week in
church she went up to say hello to his family as she does each Sunday. She then climbs up and rubs his head as he is
sitting in church. Again, we are
mortified but she brings a smile to everyone around us.
She can communicate, now what?
For many years we have worked tirelessly at helping Whitney
to communicate. She was my inspiration
in going back to school to work on my BA in Speech. She now signs fluently and also uses an Augmentative
communication device when we don’t know what she is signing. She wants to be a friend to everyone, but
doesn’t know how, so, she tries to ask endless questions to everyone to learn
about what they like. She has gotten
very creative in her questions, even if she uses the same questions with
everyone. She has gone from “do you
have a dog” and “do you have a trampoline”, to “What book do you not
like?” As well as “what T.V. show do you
not like?” Previously at cheerleading,
the person in charge was talking to me about the uniform. Whitney kept interrupting by signing over and
over, “What color of hair did you have when you were a little girl?” The blond woman clearly was uncomfortable
answering her question and so tried to ignore her, but Whitney would not stop. She finally rolled her eyes and told her
brown. Whitney was satisfied.
Last year Whitney was watching T.V. when her brother Nick
asked me to pump up a basketball for him.
I went out into the garage and pumped up the ball. When I came in the house, Whitney was not
watching T.V. I checked the entire house
3 times, then the back yard and the pool.
She was no-where. My heart was
pounding. I sent her brother Austin on a
bike in one direction, and I hopped in the car and drove in the other. Two blocks away I saw a group of people
gathered around Whitney. I jumped out of
the car and ran to hug her. One stern
woman that held her would not let me have her back before she gave me the third
degree. I signed to Whitney, “what where
you doing?” “Where were you going?” She signed, “too Wal-Mart to buy a Buzz Light
year”. As humiliated as I felt, and
mortified that I had not kept her safe that day, I had to smile at her creative
idea and determination in accomplishing her goal.
Whitney is fascinated with people who have different skin color. One of her recent questions was, “do you have a mom? What color is she?” In Fry’s there is a lovely African American man at the checkout. In Gilbert, AZ, that is a rare sight to see. Of course Whitney notices and all the way out the door she is signing over and over, “black man, black man, black man”! Thank goodness most people don’t know sign language. Another inappropriate behavior is that she loves to touch people’s double chins. We have talked to her about not doing this. She can tell us that it is thumbs down behavior to do this, and that it can make people sad. However, when it comes down to it, she cannot resist touching peoples double chins. To our dismay, she loves to wiggle the flab under everyone’s arms. In addition, she loves large bellies. She wants to pat everyone’s bellies. The larger the belly, the more fascinated she becomes with touching it. Her inappropriate behavior does not make me smile, but her innocence sure does. Only if we could all love our differences as much as Whitney does.
Yesterday Whitney and I went to watch Austin’s basketball
game. She kept trying to ask me the same
questions over and over. I finally said
to her that it was time for her to play with her toys. I said, “I like to watch basketball.” Whitney signed, “Whitney doesn’t like to
watch basketball. Why? Because it’s boring.” I again have to smile that she can tell me so much when for so many years...she could not.
Last year Whitney started 3rd grade at our neighborhood school, Val Vista Lakes Elementary. On her first day, I went in at lunch to see how she was doing. She was in the nurses office with two new friends who also happen to have trachs. Whitney was crying and I asked her what was wrong. She signed with emotion, "I love my new trach friends". I then realized how alone Whitney had been feeling, being the only person that she knew with a trach. She finally had friends like her.
Last summer, Whitney best friend Gabby past away. She has been fascinated with death since then. She asked a friend of mine if they have a dog. My friend said that her dog died last month. Whitney signs to her excitedly, “Your dog lives with Gabby and Jesus”. How can you not smile at her innocent understanding of death? Recently she asked her new nurse if she has a Mom and a Dad. She told Whitney that her mom recently had died. Now Whitney asks me on a daily basis if I’m going to die. Whenever I sign to her that I’m tired, she will sign, “Are you going to die”? As concerned as I am about her worried about her Mom dying I can’t help but smile when she asks me such an innocent and odd question.
Potty training has been
Whitney’s nemesis. She is nine. She can read. She does math. Still wears diapers. We have potty trained off and on for 5
years. She has picked out several
potties, and potty rings that fit on the big potty. We have tried charts, bribes, and spoken to
many specialists on the matter. A year
ago, we took a break when it was obvious that the problem was anxiety. Recently however, Whitney asked if we could
buy her a pink potty. So, a few days
ago, we went to Target and she picked out the Princess potty. She even sat on it a few times! We
have it in the great room, where she usually spends her time. She is more determined to learn how to do
this than she ever has been, so we are hopeful that this is her final
potty. Tonight, Nick was standing in
front of the potty talking to me. Quick
as a flash, Whitney grabbed Nick’s shorts and de-pantsed him. Nick grabbed his shorts, yanked them up and
yelled, “Thumbs down Whitney, thumbs down”.
Whitney then dropped her pants, and sat on the potty. It
was so nice of her to want to share her new potty with Nick. We are still waiting for some “successful”
sitting.
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