Yesterday was rough. She was emotional from the moment she walked in the door from school. A huge tidal wave of releasing the tics that she had held in throughout the day immediately began, and she was crying within the first 15 minutes.
Then she went to the gym and landed a round-off back tuck and a front punch.
She shrugged it off like it was no big deal, telling me "Well, Mom, I AM a level 3 cheerleader!"
I wanted to say "You are also an 8 year old little girl with tourette's syndrome, who an hour ago couldn't control the jerking and twitching of every limb on your body!"
She doesn't think on the same level that I do. I see how amazing it is for her to walk into that gym and participate in such a demanding sport. Every time she tumbles, every time she is stunting in the air, it takes my breath away. I am proud of her in a way that I could never express to anyone in this world.
She doesn't even think about tourette's syndrome on practice nights. All she thinks about is how hard she has to work to succeed at competitive cheer.... and she does succeed.
Friday, January 28, 2011
Wednesday, January 26, 2011
Her best friend
She has a best friend. They met when they were only babies and have been best friends ever since they were just 5 years old. They are both spoiled little princesses with HUGE attitudes. They have a habit of shutting out the entire world when they are together, even excluding other children. The best-friend-bubble that they wrap each other in is filled with conversations about clothes, lipgloss, and candy.
And, boy, do they love each other.
This best friend, who will also remain nameless out of respect for my daughter's privacy, has over the years become very protective of my daughter. She knows about tourette's syndrome, but has absolutely never let it effect the love that she has for her buddy.
I remember one particularly bad day, I had to take the two of them into the grocery store. Her tics had been out of control for most of the day. Her vocal tics were outrageous, she was rolling her neck and jerking her arms and legs. She was sucking in her breath so hard that I kept turning to check on her. I just knew she was going to pass out from the way that she sounded.
We rushed through the store like a huddle of tornados. I think the best friend sensed that I wanted to get out of their as quickly as possible, because she helped me gather all of the things that I needed on every isle. By the time we made it to the check out line, I was a little relieved. There was only one family in front of us and they didn't have much....
.... but they had a son the same age as the girls.
He immediately became aware of my daughter and turned around to check her out every time a burst of noise escaped her. He would watch in amazement as she jerked and twitched, not trying at all to hide his curiosity. Every time he turned around, she would get louder. She knew that he was watching her and it was upsetting her.
The best friend was watching him. Every time he turned to look, she would cross her arms and stare straight into his face like she was about to claw his eyeballs out. I didn't know what to do to fix the situation, so I just let it play out.
Finally it happened. He turned one last time, and found himself right in the face of a very upset best friend.
"STOP STARING AT HER. THERE IS NOTHING WRONG WITH HER. SHE IS MY BEST FRIEND AND I LOVE HER VERY MUCH."
Then she put her arm around my little girl's shoulders and pulled her close.
"You are super beautiful. That is why he can't stop staring."
Immediate love for that child over took me in a huge wave of appreciation. My daughter instantly clung to her words, the trust in her friend giving her comfort.
The boy slid away with his family just seconds later, and we checked out without any further complications.
I thanked God for allowing her to be with us that day. I would never have gotten away with defending her like that, although the urge to do so was there.
I will forever be grateful to that little girl. I pray that my daughter will be surrounded by friends that love her like that for the rest of her life.
And, boy, do they love each other.
This best friend, who will also remain nameless out of respect for my daughter's privacy, has over the years become very protective of my daughter. She knows about tourette's syndrome, but has absolutely never let it effect the love that she has for her buddy.
I remember one particularly bad day, I had to take the two of them into the grocery store. Her tics had been out of control for most of the day. Her vocal tics were outrageous, she was rolling her neck and jerking her arms and legs. She was sucking in her breath so hard that I kept turning to check on her. I just knew she was going to pass out from the way that she sounded.
We rushed through the store like a huddle of tornados. I think the best friend sensed that I wanted to get out of their as quickly as possible, because she helped me gather all of the things that I needed on every isle. By the time we made it to the check out line, I was a little relieved. There was only one family in front of us and they didn't have much....
.... but they had a son the same age as the girls.
He immediately became aware of my daughter and turned around to check her out every time a burst of noise escaped her. He would watch in amazement as she jerked and twitched, not trying at all to hide his curiosity. Every time he turned around, she would get louder. She knew that he was watching her and it was upsetting her.
The best friend was watching him. Every time he turned to look, she would cross her arms and stare straight into his face like she was about to claw his eyeballs out. I didn't know what to do to fix the situation, so I just let it play out.
Finally it happened. He turned one last time, and found himself right in the face of a very upset best friend.
"STOP STARING AT HER. THERE IS NOTHING WRONG WITH HER. SHE IS MY BEST FRIEND AND I LOVE HER VERY MUCH."
Then she put her arm around my little girl's shoulders and pulled her close.
"You are super beautiful. That is why he can't stop staring."
Immediate love for that child over took me in a huge wave of appreciation. My daughter instantly clung to her words, the trust in her friend giving her comfort.
The boy slid away with his family just seconds later, and we checked out without any further complications.
I thanked God for allowing her to be with us that day. I would never have gotten away with defending her like that, although the urge to do so was there.
I will forever be grateful to that little girl. I pray that my daughter will be surrounded by friends that love her like that for the rest of her life.
Tuesday, January 25, 2011
It took her an hour to eat a happy meal last night. Every time she would take a bite, she would put her food down and roll her wrists 6 times each. I asked her why she was doing that and she said that she just had to or her food wouldn't taste right.
I became exhausted just watching her.
It was amusing at first, as the things she does usually is. It loses the amusement factor, however, when the time starts creeping by and she needs to be in bed by 8.
Her little sister was giggling and copying her by the end of the meal, which caused her to be INFURIATED to the point that she ended up not finishing her food anyway.
How do you explain tourette's to a 3 year old?
I became exhausted just watching her.
It was amusing at first, as the things she does usually is. It loses the amusement factor, however, when the time starts creeping by and she needs to be in bed by 8.
Her little sister was giggling and copying her by the end of the meal, which caused her to be INFURIATED to the point that she ended up not finishing her food anyway.
How do you explain tourette's to a 3 year old?
Monday, January 24, 2011
From the beginning....
My daughter is 8 years old. She loves the color pink, anything that involves glitter, horses, and cheerleading. She has an obsession for tumbling and stunting, would practice every single day if she had a ride to the gym; she is loud, completely over the top and filled with drama, and every single day insists that her little sister is trying to destroy her life (which I must admit, at times, it does seem that way!).
She also has tourette's syndrome.
She started showing symptoms when she was only 3 years old, the same age that my younger daughter is now. She was diagnosed a few years later, and last year, when her tics became more severe, her neurologist prescribed medication.
Tourette's syndrome is a part of our life. It effects us every single day in some form or another.
Her tics range from loud throat clearing to arm and leg jerking. She rolls her neck and eyes, jumps up and down, and sucks in her breath in a way that sounds like she is suffocating. She has days when her medication is a God-send and very few tics escape through out the day.
..... then there are other days when it seems as though a horse tranquilizer would not be able to control them. They rush through her body in a series of unstoppable movements and noises, and will repeat every few minutes. These are the days that she cries. I don't know if it is because she is just so exhausted from not being able to sit still, or if it is the "emotional complications" that her doctor has tried to prepare us for. Anything will hurt her feelings, or nothing will hurt her feelings- either way, she cries.
School days can be particularly hard on her sometimes. She spends all day at school suppressing whatever tics try to escape her, so by the time she gets in the car at the end of the day, she explodes. It is like watching a water dam break after a massive flood. Every movement and jerk, every grunt and growl, rushes out of her little body like debris being hurled from a tornado. Simultaniously she talks a hundred miles a minute about every single detail of her day, almost like she doesn't even notice the release.
There is only one thing harder to watch- her panic attacks. If I am watching her when one is about to come on, I can sheild her from the entire population of the world that she insists is all staring at her at the same exact time. The color in her face becomes a bright red and her breathing becomes that of an old woman that has smoked since the age of 5. Her brain will choose one phrase and that is what she repeats until I can talk her through it. "I can't" is normally what she says. Sometimes it makes sense, other times it doesn't.
I have found out from other parents that have a child with TS, that "picking" is just a part of the symptoms. Her "picking" involves her belly button. She will pick and pick until her belly button is open and bleeding, and even then she will continue to pick. She will cry from the pain but she just can't seem to stop. Just in the past few days, she has started doing the same thing to her bottom lip. She scratches the inside of her lip over and over and over again... This has to be one of the worst things about tourette's syndrome because it is causing actual damage to her body, and there is next to nothing that will prevent it. I have recently been told about excersizes with clay or play-dough that will help her channel the "picking" to those things instead of her own body. I have started with the play-dough. All I can do is pray that it works.
Praying helps a lot. Praying turns over everything that she goes through every day to the One that can handle it all. He helps me see clearly that my daughter is amazing exactly the way that she is. She has days that she is happy, thrilled with life, and unaffected emotionally by tourette's syndrome. These are the days that we live for. These are the days that we look forward to, and the days that we concentrate on. But EVERY DAY, good or bad, we thank Jesus Christ for the amazing little family that He has given us.
She is absolutely one hundred percent in love with cheerleading. Not just regular cheerleading, with pom poms and football games, but competitive cheerleading. She started when she was only 4 years old, and to this day it is the only time that she seems to feel completely calm. Calm is a weird word to describe her at a time when she is pulling numerous flips, being thrown into the air "like a tiny little rocket" (her words, not mine), being caught by her team mates OR being dropped to the ground, and repeatedly practicing a 2 and a half minute routine as many times as possible in a 2 hour practice... but calm is what she is. There are no body jerks, no vocal tics, no panic attacks... There is just my little girl, doing something that she loves, without anything keeping her from doing it.
She has been a part of the same team for 4 seasons now, and there are people there that do not even know she has tourette's syndrome. None of her team mates know, and I think that the only thing that worries her while she is there is that one of them might find out and treat her differently. I am not sure if it is the right thing or not to let her ignore it for the few days a week that we are there. I have been told to teach her to be open with everyone in her life about it so that she doesn't feel like she has to hide from the people that love her, to teach her not to be ashamed of who she is...
But tourette's syndrome is not who she is.
My daughter is 8 years old. She loves the color pink, anything that involves glitter, horses, and cheerleading. She has an obsession for tumbling and stunting, would practice every single day if she had a ride to the gym; she is loud, completely over the top and filled with drama, and every single day insists that her little sister is trying to destroy her life (which I must admit, at times, it does seem that way!).
This blog is going to help me remember that.
She also has tourette's syndrome.
She started showing symptoms when she was only 3 years old, the same age that my younger daughter is now. She was diagnosed a few years later, and last year, when her tics became more severe, her neurologist prescribed medication.
Tourette's syndrome is a part of our life. It effects us every single day in some form or another.
Her tics range from loud throat clearing to arm and leg jerking. She rolls her neck and eyes, jumps up and down, and sucks in her breath in a way that sounds like she is suffocating. She has days when her medication is a God-send and very few tics escape through out the day.
..... then there are other days when it seems as though a horse tranquilizer would not be able to control them. They rush through her body in a series of unstoppable movements and noises, and will repeat every few minutes. These are the days that she cries. I don't know if it is because she is just so exhausted from not being able to sit still, or if it is the "emotional complications" that her doctor has tried to prepare us for. Anything will hurt her feelings, or nothing will hurt her feelings- either way, she cries.
School days can be particularly hard on her sometimes. She spends all day at school suppressing whatever tics try to escape her, so by the time she gets in the car at the end of the day, she explodes. It is like watching a water dam break after a massive flood. Every movement and jerk, every grunt and growl, rushes out of her little body like debris being hurled from a tornado. Simultaniously she talks a hundred miles a minute about every single detail of her day, almost like she doesn't even notice the release.
There is only one thing harder to watch- her panic attacks. If I am watching her when one is about to come on, I can sheild her from the entire population of the world that she insists is all staring at her at the same exact time. The color in her face becomes a bright red and her breathing becomes that of an old woman that has smoked since the age of 5. Her brain will choose one phrase and that is what she repeats until I can talk her through it. "I can't" is normally what she says. Sometimes it makes sense, other times it doesn't.
I have found out from other parents that have a child with TS, that "picking" is just a part of the symptoms. Her "picking" involves her belly button. She will pick and pick until her belly button is open and bleeding, and even then she will continue to pick. She will cry from the pain but she just can't seem to stop. Just in the past few days, she has started doing the same thing to her bottom lip. She scratches the inside of her lip over and over and over again... This has to be one of the worst things about tourette's syndrome because it is causing actual damage to her body, and there is next to nothing that will prevent it. I have recently been told about excersizes with clay or play-dough that will help her channel the "picking" to those things instead of her own body. I have started with the play-dough. All I can do is pray that it works.
Praying helps a lot. Praying turns over everything that she goes through every day to the One that can handle it all. He helps me see clearly that my daughter is amazing exactly the way that she is. She has days that she is happy, thrilled with life, and unaffected emotionally by tourette's syndrome. These are the days that we live for. These are the days that we look forward to, and the days that we concentrate on. But EVERY DAY, good or bad, we thank Jesus Christ for the amazing little family that He has given us.
She is absolutely one hundred percent in love with cheerleading. Not just regular cheerleading, with pom poms and football games, but competitive cheerleading. She started when she was only 4 years old, and to this day it is the only time that she seems to feel completely calm. Calm is a weird word to describe her at a time when she is pulling numerous flips, being thrown into the air "like a tiny little rocket" (her words, not mine), being caught by her team mates OR being dropped to the ground, and repeatedly practicing a 2 and a half minute routine as many times as possible in a 2 hour practice... but calm is what she is. There are no body jerks, no vocal tics, no panic attacks... There is just my little girl, doing something that she loves, without anything keeping her from doing it.
She has been a part of the same team for 4 seasons now, and there are people there that do not even know she has tourette's syndrome. None of her team mates know, and I think that the only thing that worries her while she is there is that one of them might find out and treat her differently. I am not sure if it is the right thing or not to let her ignore it for the few days a week that we are there. I have been told to teach her to be open with everyone in her life about it so that she doesn't feel like she has to hide from the people that love her, to teach her not to be ashamed of who she is...
But tourette's syndrome is not who she is.
My daughter is 8 years old. She loves the color pink, anything that involves glitter, horses, and cheerleading. She has an obsession for tumbling and stunting, would practice every single day if she had a ride to the gym; she is loud, completely over the top and filled with drama, and every single day insists that her little sister is trying to destroy her life (which I must admit, at times, it does seem that way!).
This blog is going to help me remember that.
Subscribe to:
Posts (Atom)