I haven't written a post since May. It is now 2 weeks before Christmas, and I am at a loss as to where to begin. So many things have changed.
I guess I will start with the most obvious- Her tics and OCD are worse than they have ever been. Her behavior and sleep patterns are very unstable. She jumps up and down at least a thousand times every day, counts everything from how many times she jerks to the lines on the floor. She has one drawer in her entire dresser that she wants her clothes to be kept in- ALL of her clothes (panties, blue jeans, skirts, and socks all crammed into one drawer). She has a series of cartwheels, jumps, and blowing out her cheeks that she repeats every so often.
There is a window of about 2 hours every evening when her morning dose of medication is wearing off and it is still too early for her night dose. This time is always the hardest. I try to have her home at this time because I am never sure how she is going to handle it. I made the mistake of taking her in the grocery store at that time of the day not too long ago and we barely got through the first section before I had to take her out. She couldn't stop counting the lines on the floor and she didn't want them to touch her. That is a very hard thing to avoid, however, when her main tic is jumping. The jumping would make her land on the lines, which made her freak out and start counting how many times they touched her. That sort of thing can happen in any store or mall where there are lines on the floor, depending on the time of day.
School became too much to handle. She was having nights when she wouldn't even close her eyes until close to 5 am, so school the next morning would be out of the question. If I got her to bed at a decent hour, and the next morning got her ready on time, one thing would set off a whirlwind of tics and panic over the thought of tic-ing in front of the kids in her class, and she would miss that day as well. I pulled her out and started homeschooling about 2 months ago.
I have no idea how her teacher ever got through the day with her.
She can't sit still, never remembers the things that she learns unless it is presented in an extremely repetitive manner, she screams and hiccups during tests because she gets nervous, and if she's had a restless night, she will literally fall asleep in the middle of a sentence when I am looking directly at her.
The school district finally diagnosed her with having a learning disability a few weeks ago. Since then, she has been attending 3 hours of special education a week and I am overwhelmed with the support and extra help that we both get in every subject. (If anyone ever considers homeschooling, K12 is definitely the way to go!)
She cries a lot out of frustration. She tells me all of the time that she hates Tourettes Syndrome and she wishes that someone could take her brain out and giver her a "slower one". That is the best way that she can describe what she goes through everyday- she can't slow down.
Allstars continues to be her sanctuary. The constant movement and the specific routine of practice keeps her occupied. She says she doesn't even think about TS when she is at the gym because there is always something for her to do with her body. I can't even describe how thankful I am that she has that.
She started seeing a new doctor. There was an issue with her previous doctor not returning our phone calls a few months ago, and because of her pretty serious issues at night we can not afford to have a doctor that isn't dependable. This doctor has helped her night issues some. Unless her tics during the day are extremely bad, the new medication that she has been put on helps her fall asleep at night. That has been a huge relief. Sleep is so valuable when you have a child that needs your constant attention.
We have started going to the nursing home on Tuesday mornings. She sings to the residents and visits with them for a few hours every week. The very first time that I took her, I knew that we would be regulars. She seems to be at ease around the people that live there. She can spend the entire few hours that we are there talking to each one of them, hugging them, and singing about the Lord. We are going in the morning to sing Christmas carols.
The holidays are going to be busy and full of excitement, so I am sure that will only exasperate things. But as long as she holds on to her smile, I will be able to do the same. I know that her Christmas will be fantastic. Her daddy and I will make sure of it.
She deserves more than I would ever be able to do for her. She deserves a day that isn't completely ruined by a brain she can not control.
Monday, December 12, 2011
Monday, May 16, 2011
Frustration....
Her teacher called me this morning by 8:30 am. She was already hiccuping. I talked to her for a few minutes over the phone, and tried to calmly get her through them. I suggested substituting the hiccups for another tic, that wouldn't disrupt the class.
It did not work.
The teacher just called again.
My only option is to pick her up from school to keep her from disrupting the other students. I can not even describe the level of frustration that I have reached. I am crying now, waiting on her doctor to return my call. I am hoping that he has a miracle solution to her new tic, but I know that he doesn't.
She missed a total of 3 days of school last week, and it is looking like she is going to miss today as well. Those days in addition to previous missed days, puts her over the amount of days that is permitted by the school.
I do not want to home school her next year. I really don't. She has made friends this year, she loves her teacher and the activities. I can not justify sending her to such an expensive school, however, if she can not make it through the year.
I am lost and confused. I wish I knew what to do.
It did not work.
The teacher just called again.
My only option is to pick her up from school to keep her from disrupting the other students. I can not even describe the level of frustration that I have reached. I am crying now, waiting on her doctor to return my call. I am hoping that he has a miracle solution to her new tic, but I know that he doesn't.
She missed a total of 3 days of school last week, and it is looking like she is going to miss today as well. Those days in addition to previous missed days, puts her over the amount of days that is permitted by the school.
I do not want to home school her next year. I really don't. She has made friends this year, she loves her teacher and the activities. I can not justify sending her to such an expensive school, however, if she can not make it through the year.
I am lost and confused. I wish I knew what to do.
Sunday, May 15, 2011
Rough week.....
This absolutely has been one of the worst weeks we have had in a long time...
Monday morning, my daughter's substitute teacher called me. She had only been at school about 2 hours at that point. She said that my daughter had been complaining of a headache and was really dizzy. Before I could get to the school to pick her up, I received 2 more phone calls. She was so dizzy that she slipped in her desk and was extremely pale.
I knew when I saw her that something was wrong. All of the color was drained from her face, not even her lips were pink. She was walking in slow motion, almost as if she were asleep with her eyes open. I took her to the closest pharmacy so that they could take her blood pressure. One of the medications that controls her tics can also be taken for high blood pressure.
It was 70/48.
The pharmacist sent me to the Urgent Care center that was directly across the street. The nurse there took her blood pressure as well, and then called 911.
By the time the ambulance got onto the interstate heading towards the hospital, she was unconscious. The EMS lady got her to come to after only about a minute, but to me, it was a lifetime.
We spent the rest of the day at the hospital. They got her blood pressure back to normal, and explained that she had too much of that one medication in her system. Her neurologist called, and her dosage was cut in half to keep her blood pressure from being effected again.
She slept most of the next day. By late afternoon, she was bouncing off the walls with energy so I took her to cheer practice. What better way for her to burn off excessive energy than to take her to a gym full of other over-energetic cheerleaders?!
That didn't work out. She became way too stimulated and was doing all of her tics, in addition to outrageous things, like running head first into the padded wall, whistling, and grabbing her face and stretching it out. She drew way too much attention to herself, so I pulled her out, and made her sit for a few minutes. Practice was over shortly afterward, thank goodness, so I took her home.
When they cut her dosage in half to protect her blood pressure, none of us thought about what that meant for her tourette's.
She didn't get to sleep that night until almost 2 am, and woke up on her own before 7 am, WAY too excited about going back to school. I said a prayer for her teacher when she walked out the front door because I knew it was going to be quite a day for her.
That afternoon when I picked her up, the stories I heard from her teacher about her jumping up and down out of her desk, screaming at random moments throughout the day, and complete inattention to everything school related, did not shock me at all. I didn't call her doctor, though. Looking back, I definitely should have called that day. I guess I was hoping that she would adjust to the lowered dose, and calm down.
That night went about the same as the night before. She went to bed extremely late, got up extremely early, and was very energized when she left. Her teacher called before 9 am, to say that she hadn't completed her homework (which I already knew, because it was IMPOSSIBLE to get her to sit down to do it) and to say that she had the hiccups. At the time, it seemed silly to both of us that she was mentioning it, and she even said "It is just strange that she has been hiccuping for over an hour!" We laughed about it and ended the conversation. Within a half an hour she called me back, said that the hiccups were so close together that it seemed like it was getting hard for her to breathe, and that she was starting to panic a little bit. After listening to it myself over the phone, I went to pick her up. By the time I got there, she was on the floor, with her teacher and the principal standing over her. The hiccups got so close together that she couldn't breathe, and she completely hyperventilated.
Turns out, according to her doctor, the hiccups are a common tic for people with TS.
The hiccups stopped once she calmed down, but I took her home anyway. She spent the rest of the day walking around the house, opening and shutting every cabinet in sight, and doing EVERY SINGLE TIC THAT SHE HAS. It was absolutely the most exhausting day ever.
I took her to the doctor the very next day. He adjusted all of her medication, and said that by the end of the weekend, she should be back in order.
I had planned on spending the entire weekend staring at her and taking notes, as most paranoid mothers do to their children, but I came down with strep throat. The only thing I got to stare at was the couch and a bottle of Nyquil. My husband kept the girls out of the house most of the weekend, so I don't really know how she has adjusted to the change in medication. He says she is fine, but that is the same answer I would get from him if one of her arms were completely falling apart.
Hopefully tomorrow's school day will be a lot smoother, for the sake of my precious daughter, and for the sake of her simply amazing teacher.
I want more than anything for her to fit in. It breaks my heart that everything that went wrong this week, happened at school in front of all of her friends. Being different seems to be her biggest fear, and I must admit, it is mine as well. The thought of her being teased or made fun of, especially because of something that she can not help, absolutely kills me.
I just want for the doctor to find a medicine that will help her forever, a medicine that doesn't stop working because the disorder worsens over time.... or better yet- I want the cause of Tourette's Syndrome to be discovered, and a cure to be found.
Monday morning, my daughter's substitute teacher called me. She had only been at school about 2 hours at that point. She said that my daughter had been complaining of a headache and was really dizzy. Before I could get to the school to pick her up, I received 2 more phone calls. She was so dizzy that she slipped in her desk and was extremely pale.
I knew when I saw her that something was wrong. All of the color was drained from her face, not even her lips were pink. She was walking in slow motion, almost as if she were asleep with her eyes open. I took her to the closest pharmacy so that they could take her blood pressure. One of the medications that controls her tics can also be taken for high blood pressure.
It was 70/48.
The pharmacist sent me to the Urgent Care center that was directly across the street. The nurse there took her blood pressure as well, and then called 911.
By the time the ambulance got onto the interstate heading towards the hospital, she was unconscious. The EMS lady got her to come to after only about a minute, but to me, it was a lifetime.
We spent the rest of the day at the hospital. They got her blood pressure back to normal, and explained that she had too much of that one medication in her system. Her neurologist called, and her dosage was cut in half to keep her blood pressure from being effected again.
She slept most of the next day. By late afternoon, she was bouncing off the walls with energy so I took her to cheer practice. What better way for her to burn off excessive energy than to take her to a gym full of other over-energetic cheerleaders?!
That didn't work out. She became way too stimulated and was doing all of her tics, in addition to outrageous things, like running head first into the padded wall, whistling, and grabbing her face and stretching it out. She drew way too much attention to herself, so I pulled her out, and made her sit for a few minutes. Practice was over shortly afterward, thank goodness, so I took her home.
When they cut her dosage in half to protect her blood pressure, none of us thought about what that meant for her tourette's.
She didn't get to sleep that night until almost 2 am, and woke up on her own before 7 am, WAY too excited about going back to school. I said a prayer for her teacher when she walked out the front door because I knew it was going to be quite a day for her.
That afternoon when I picked her up, the stories I heard from her teacher about her jumping up and down out of her desk, screaming at random moments throughout the day, and complete inattention to everything school related, did not shock me at all. I didn't call her doctor, though. Looking back, I definitely should have called that day. I guess I was hoping that she would adjust to the lowered dose, and calm down.
That night went about the same as the night before. She went to bed extremely late, got up extremely early, and was very energized when she left. Her teacher called before 9 am, to say that she hadn't completed her homework (which I already knew, because it was IMPOSSIBLE to get her to sit down to do it) and to say that she had the hiccups. At the time, it seemed silly to both of us that she was mentioning it, and she even said "It is just strange that she has been hiccuping for over an hour!" We laughed about it and ended the conversation. Within a half an hour she called me back, said that the hiccups were so close together that it seemed like it was getting hard for her to breathe, and that she was starting to panic a little bit. After listening to it myself over the phone, I went to pick her up. By the time I got there, she was on the floor, with her teacher and the principal standing over her. The hiccups got so close together that she couldn't breathe, and she completely hyperventilated.
Turns out, according to her doctor, the hiccups are a common tic for people with TS.
The hiccups stopped once she calmed down, but I took her home anyway. She spent the rest of the day walking around the house, opening and shutting every cabinet in sight, and doing EVERY SINGLE TIC THAT SHE HAS. It was absolutely the most exhausting day ever.
I took her to the doctor the very next day. He adjusted all of her medication, and said that by the end of the weekend, she should be back in order.
I had planned on spending the entire weekend staring at her and taking notes, as most paranoid mothers do to their children, but I came down with strep throat. The only thing I got to stare at was the couch and a bottle of Nyquil. My husband kept the girls out of the house most of the weekend, so I don't really know how she has adjusted to the change in medication. He says she is fine, but that is the same answer I would get from him if one of her arms were completely falling apart.
Hopefully tomorrow's school day will be a lot smoother, for the sake of my precious daughter, and for the sake of her simply amazing teacher.
I want more than anything for her to fit in. It breaks my heart that everything that went wrong this week, happened at school in front of all of her friends. Being different seems to be her biggest fear, and I must admit, it is mine as well. The thought of her being teased or made fun of, especially because of something that she can not help, absolutely kills me.
I just want for the doctor to find a medicine that will help her forever, a medicine that doesn't stop working because the disorder worsens over time.... or better yet- I want the cause of Tourette's Syndrome to be discovered, and a cure to be found.
Friday, April 15, 2011
She's happy :)
She started her new medication about 2 weeks ago. It only took about 2 days to notice the change in her. She is happy again! She hasn't had any panic attacks, some of her tics have eased off, and she is altogether a much more at-ease child.
Some tics still have a pretty strong hold on her little body. The leg jerk is the most dominant one. But she is HAPPY.
And not a "I'm on happy drugs" kind of happy. She is energetic, full of laughter and jokes, and just seems to have some peace for the first time in a really long time.
I can't wait to go back to the TS specialist and tell him that he has already made such a positive difference in her life, just like he promised he would. I am so happy with that doctor that I want to buy him a present! Haha!
Next month is National Tourette's Syndrome Awareness Month. The awareness ribbon color is teal. I am looking into buying some of the awareness bracelets so that she can pass them out to all of her family and friends to raise awareness of TS. It is such a misunderstood disorder and I believe that telling people more about it will help with that. I may even type up little cards and have her pass those out with the bracelets.
Right now, life is easier. I am thankful for that. I pray that her body doesn't become adjusted to that medication too quickly. She deserves this time of rest.
Some tics still have a pretty strong hold on her little body. The leg jerk is the most dominant one. But she is HAPPY.
And not a "I'm on happy drugs" kind of happy. She is energetic, full of laughter and jokes, and just seems to have some peace for the first time in a really long time.
I can't wait to go back to the TS specialist and tell him that he has already made such a positive difference in her life, just like he promised he would. I am so happy with that doctor that I want to buy him a present! Haha!
Next month is National Tourette's Syndrome Awareness Month. The awareness ribbon color is teal. I am looking into buying some of the awareness bracelets so that she can pass them out to all of her family and friends to raise awareness of TS. It is such a misunderstood disorder and I believe that telling people more about it will help with that. I may even type up little cards and have her pass those out with the bracelets.
Right now, life is easier. I am thankful for that. I pray that her body doesn't become adjusted to that medication too quickly. She deserves this time of rest.
Thursday, April 7, 2011
A new medication....
One of her many tics is a constant leg jerk. She snaps her legs out at the knees in a way that my husband describes as "kick-starting a dirt bike". I have gotten many bruised shins from fixing her hair in the morning. She has been doing it for years, but I always seem to forget when I am standing right behind her, brushing her hair and putting in bows.
This morning was one of those mornings. I was almost completely finished when she kicked me, extremely hard, right in the shin. It is actually funny now that I think about it. I was just about to slide the bow into her hair when she tic'ed, first the top of her body, and before I could move, she snapped her leg. It kicked me right on my skinny little shin bone, causing me to slide my hand through her pony tail, messing up everything that I had done. I screamed, of course, which startled her, and she started crying.
"I am so sorry, Mommy! I am so sorry! Are you ok? Did I break your leg?"
I laughed uncontrollably through the pain, and re-fixed her hair. I explained that she was going to have to kick me a few more hundred times to actually cause a break.
I wish all of her tics were that funny. That leg jerk has caused her to trip, fall, kick people, kick walls... The people that are closest to her have learned to stay clear of her back side like they would stay clear of the back of a horse.
The specialist that we met with yesterday was amazing. He answered alot of questions, eased alot of fears, and most importantly, he talked with my very nervous little girl like they had been best friends her entire life. She doesn't like seeing new doctors. She becomes very stiff and quiet. Even getting her to talk louder than a whisper is a challenge.
At the end of the appointment, the doctor hugged her and said "Your life is going to be so much easier now that we have met."
I wanted to cry and BEG him to make that a promise.
He prescribed her a new medication to take in addition with what she is already taking for tics. He said that it would calm her down enough to be able to suppress the tics easier through out the day. It should also help with her panic attacks, and her obsessive need to rub and scratch her skin away.
I didn't give it to her this morning, though. I was suppose to, but I was so afraid that she would fall asleep in class or that she would have an allergic reaction and I wouldn't be there to help her. I have crazy anxiety of my own when it comes to her. Probably because we have been through so much already, I just want to protect her from anything else going wrong. So, she will start the new medicine on Saturday, when she will be with me all day and I will know if any side effects or allergic reactions occur.
She will see the specialist every 4 weeks. He will monitor the tics, make sure the medication is working, and make adjustments as needed. He will also teach her how to suppress her tics better when she is away from home. I think she already does that pretty well, but he says that he can show her a way to handle that so that it doesn't stress her out.
I pray that this doctor helps her. I am so ready to see her happy again. I miss her.
This morning was one of those mornings. I was almost completely finished when she kicked me, extremely hard, right in the shin. It is actually funny now that I think about it. I was just about to slide the bow into her hair when she tic'ed, first the top of her body, and before I could move, she snapped her leg. It kicked me right on my skinny little shin bone, causing me to slide my hand through her pony tail, messing up everything that I had done. I screamed, of course, which startled her, and she started crying.
"I am so sorry, Mommy! I am so sorry! Are you ok? Did I break your leg?"
I laughed uncontrollably through the pain, and re-fixed her hair. I explained that she was going to have to kick me a few more hundred times to actually cause a break.
I wish all of her tics were that funny. That leg jerk has caused her to trip, fall, kick people, kick walls... The people that are closest to her have learned to stay clear of her back side like they would stay clear of the back of a horse.
The specialist that we met with yesterday was amazing. He answered alot of questions, eased alot of fears, and most importantly, he talked with my very nervous little girl like they had been best friends her entire life. She doesn't like seeing new doctors. She becomes very stiff and quiet. Even getting her to talk louder than a whisper is a challenge.
At the end of the appointment, the doctor hugged her and said "Your life is going to be so much easier now that we have met."
I wanted to cry and BEG him to make that a promise.
He prescribed her a new medication to take in addition with what she is already taking for tics. He said that it would calm her down enough to be able to suppress the tics easier through out the day. It should also help with her panic attacks, and her obsessive need to rub and scratch her skin away.
I didn't give it to her this morning, though. I was suppose to, but I was so afraid that she would fall asleep in class or that she would have an allergic reaction and I wouldn't be there to help her. I have crazy anxiety of my own when it comes to her. Probably because we have been through so much already, I just want to protect her from anything else going wrong. So, she will start the new medicine on Saturday, when she will be with me all day and I will know if any side effects or allergic reactions occur.
She will see the specialist every 4 weeks. He will monitor the tics, make sure the medication is working, and make adjustments as needed. He will also teach her how to suppress her tics better when she is away from home. I think she already does that pretty well, but he says that he can show her a way to handle that so that it doesn't stress her out.
I pray that this doctor helps her. I am so ready to see her happy again. I miss her.
Tuesday, April 5, 2011
A new day, a new doctor...
She didn't go to school today.
Her little sister was sick and her daddy had to go to work early this morning. So instead of waking up the sick baby, I called my mother and asked if she would stop by and give her a ride to school.
My mother pulled up at 8:19 am- 4 minutes after the last bell at school rang, announcing tardiness. By the time Mom walked in our front door, my daughter was sobbing.
Being late, even 5 seconds late, causes her to panic.
I could have made her go to school anyway, which is what I am sure everyone reading this is thinking that I should have done.
She wouldn't have been able to breath by the time she had gotten to class if I had done that. She would have spent the first half of the day crying and jumping and jerking, and her teacher would have called me by lunch time.
So I just kept her home.
She counted her jumps, snapped her legs, and walked around the house for about 30 minutes or so, and then she was calm again.
Tomorrow she is seeing a pediatric TS specialist for the first time. It will be quite a change from her neurologist. I am not looking forward to the initial visit, re-explaining every symptom, watching as they observe her and ask her questions... But I am looking forward to talking to someone whose main focus is on her disorder.
I pray that this specialist can help her. I know that TS can not be cured, but it can be treated. She needs this doctor to understand what she goes through every day. She needs help with her tics, her panic attacks, and her night terrors.... And I need help, too. I need to know how I can help her.
Her little sister was sick and her daddy had to go to work early this morning. So instead of waking up the sick baby, I called my mother and asked if she would stop by and give her a ride to school.
My mother pulled up at 8:19 am- 4 minutes after the last bell at school rang, announcing tardiness. By the time Mom walked in our front door, my daughter was sobbing.
Being late, even 5 seconds late, causes her to panic.
I could have made her go to school anyway, which is what I am sure everyone reading this is thinking that I should have done.
She wouldn't have been able to breath by the time she had gotten to class if I had done that. She would have spent the first half of the day crying and jumping and jerking, and her teacher would have called me by lunch time.
So I just kept her home.
She counted her jumps, snapped her legs, and walked around the house for about 30 minutes or so, and then she was calm again.
Tomorrow she is seeing a pediatric TS specialist for the first time. It will be quite a change from her neurologist. I am not looking forward to the initial visit, re-explaining every symptom, watching as they observe her and ask her questions... But I am looking forward to talking to someone whose main focus is on her disorder.
I pray that this specialist can help her. I know that TS can not be cured, but it can be treated. She needs this doctor to understand what she goes through every day. She needs help with her tics, her panic attacks, and her night terrors.... And I need help, too. I need to know how I can help her.
Friday, January 28, 2011
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.
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.
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)