Yesterday was my writing group and with my hubby out of town I wasn't sure I could go. Then I decided to take Queen Teen with me, loading up coloring books and crayons and telling her "it will be fun."
She scowled at me but got her shoes on and then said, "Maybe it will be fun."
Maybe is as good as a yes in Queen Teen talk.
We met the other's at the restaurant where Queen Teen smiled and responded to questions about school, then colored in her new Mermaid book until the food came. I talked to my friends and discussed writing and books for two hours while helping Queen Teen find a color, turn a page, hold her lemonade, and eat her meal. Rather than declaring she was bored after twenty minutes as I expected, Queen Teen remained cheerful and friendly. "This is fun," she said while twirling the little paper umbrellas that came with her lemonade.
Simply by sitting beside me in a restaurant with my writing-friends and coloring, she gave me a present: time to be creative. Her actions showed me she understands how much writing means to me. Often when I pick her up from school my lap top will be in the car and she'll see it and say, "You must have been working." Working equals writing.
It's funny... sometimes Queen Teen can be obstinate and moody, making me want to kick the wall in frustration. Just as often though, she can be compassionate and kind. We have fun together, laughing at jokes we make up or discussing why our dog Bourre snores. Her sense of humor is quick, and so is her temper.
There was a time not so long ago when she would've fought me about leaving the house for dinner at a restaurant because she didn't like having her routine disturbed. Now she's eager to try new things and see new places. Her world is opening up, little by little, and she's starting to understand she actually isn't the center of it.
Thank you Queen Teen for letting me be your Mommy AND a writer.
Saturday, August 30, 2008
Thursday, August 28, 2008
Day Number Four of Jr. High
Today is Thursday, day number four of Jr. High, and so far, so... interesting.
First, WHY does school start at 7:30 am! Come on! Hasn't anyone read the study that showed Teenagers are sleep deprived and any classes before 10:00 am are a complete waste of time? Plus, I am NOT a morning person, so dragging myself out of bed before 6:00 am and slapping a pleasant smile on my face while getting my daughter ready for school is against my religion!
Second, Queen Teen loves her new teacher, Gayle, but isn't too pleased that she's supposed to go from class to class for different subjects with different teachers. To her, it is a stupid idea and a waste of her time. She wants her equipment (Intellikeys, CCTV, and computer) in ONE room, all set up at HER station, the way she WANTS, without all this moving around. I have to say I kind of agree with her, especially since I believe the way Jr High is run in the USA is diametrically opposed to the way children should be educated (don't get me started!). However, this is the way Jr High IS and we want Queen Teen to learn how to live in the world and cope with change. Therefore, she is required to spend three periods in other classrooms with the remaining four in the Resource room with her beloved Gayle. In time I believe Queen Teen will get the hang of it. If not, we'll adjust as needed.
Third, Queen Teen has decided there's no way in hell she's wearing her hearing aids, she don't care how much they're supposed to help her or what kind of bribes we offer, forget it, we ain't getting those things in her ears EVER AGAIN. This could be a problem.
Fourth, lucky for her, the hearing aids broke and are now on their way back to the audiologist for repair.
Fifth, at the last minute her school found a full-time aid for her, thank goodness! I really didn't want to have to start that battle.
Sixth, Queen Teen has to use her wheelchair more than she would like because the ground of her new school is so bumpy and uneven it isn't safe for her to use her walker much. This makes her very angry.
Seventh, she has a huge smile on her face when I pick her up from school and she tells me she loves it. Whew!
First, WHY does school start at 7:30 am! Come on! Hasn't anyone read the study that showed Teenagers are sleep deprived and any classes before 10:00 am are a complete waste of time? Plus, I am NOT a morning person, so dragging myself out of bed before 6:00 am and slapping a pleasant smile on my face while getting my daughter ready for school is against my religion!
Second, Queen Teen loves her new teacher, Gayle, but isn't too pleased that she's supposed to go from class to class for different subjects with different teachers. To her, it is a stupid idea and a waste of her time. She wants her equipment (Intellikeys, CCTV, and computer) in ONE room, all set up at HER station, the way she WANTS, without all this moving around. I have to say I kind of agree with her, especially since I believe the way Jr High is run in the USA is diametrically opposed to the way children should be educated (don't get me started!). However, this is the way Jr High IS and we want Queen Teen to learn how to live in the world and cope with change. Therefore, she is required to spend three periods in other classrooms with the remaining four in the Resource room with her beloved Gayle. In time I believe Queen Teen will get the hang of it. If not, we'll adjust as needed.
Third, Queen Teen has decided there's no way in hell she's wearing her hearing aids, she don't care how much they're supposed to help her or what kind of bribes we offer, forget it, we ain't getting those things in her ears EVER AGAIN. This could be a problem.
Fourth, lucky for her, the hearing aids broke and are now on their way back to the audiologist for repair.
Fifth, at the last minute her school found a full-time aid for her, thank goodness! I really didn't want to have to start that battle.
Sixth, Queen Teen has to use her wheelchair more than she would like because the ground of her new school is so bumpy and uneven it isn't safe for her to use her walker much. This makes her very angry.
Seventh, she has a huge smile on her face when I pick her up from school and she tells me she loves it. Whew!
Monday, August 25, 2008
First Day of Jr. High
This morning I drove my daughter to Jr. High for her very first day, and although there was a part of me that felt sad and nervous, I also had to restrain myself from peeling out of the parking lot while laughing hysterically, shouting "See ya!" Yahoo, another summer licked! And yes I know how precious the time I spend with Queen Teen is and how every summer down is just one more bit of childhood gone, but by the end of August she and I are both so tired of each other we can hardly hide it anymore. Not one more game of Uno, please! Time for other people to entertain the Queen.
For the first time in her life, this transition didn't seem to frighten her. I was expecting tears and sleepless nights, but instead she talked about school like it was the greatest place on Earth and she couldn't wait to go. We picked out her clothes the night before and she washed her walker, wheels to handles, chatting happily about what school will be like. She had a good sleep, got up on time, ate a good breakfast, got dressed and cheerfully got into the van for me to drive her to school.
Once there she walked to class using her walker and I followed with her wheelchair. She knew exactly where to go, thanks to Laura. Laura met us at the classroom and we all went in together to greet her new teacher, whom Queen Teen had met before. Queen Teen had a grin on her face the whole time, so I gave her a quick hug and left, feeling a tiny tug on my heart as I walked away. I looked around at the other students as they sleepily sauntered to their first class, seeing how grown up and tall they are. My daughter looks so tiny in comparison, but she's just as grown up and ready for school as they.
The next few weeks will be bumpy, I'm sure. Queen Teen has to learn how to navigate quickly from one class to the next in different buildings across uneven ground on the campus. Half of her classes are in the Resource room where she will work on Science, Math, Sign Language and other skills, with Language Arts, PE, and Social Studies in other classrooms. It's a good balance of inclusion and support, I think, and we can adjust her schedule as need be.
As for me, I have the next two weeks to get organized and catch up on Medusa's Muse work before I start Graduate School. This is going to a very busy Fall!
For the first time in her life, this transition didn't seem to frighten her. I was expecting tears and sleepless nights, but instead she talked about school like it was the greatest place on Earth and she couldn't wait to go. We picked out her clothes the night before and she washed her walker, wheels to handles, chatting happily about what school will be like. She had a good sleep, got up on time, ate a good breakfast, got dressed and cheerfully got into the van for me to drive her to school.
Once there she walked to class using her walker and I followed with her wheelchair. She knew exactly where to go, thanks to Laura. Laura met us at the classroom and we all went in together to greet her new teacher, whom Queen Teen had met before. Queen Teen had a grin on her face the whole time, so I gave her a quick hug and left, feeling a tiny tug on my heart as I walked away. I looked around at the other students as they sleepily sauntered to their first class, seeing how grown up and tall they are. My daughter looks so tiny in comparison, but she's just as grown up and ready for school as they.
The next few weeks will be bumpy, I'm sure. Queen Teen has to learn how to navigate quickly from one class to the next in different buildings across uneven ground on the campus. Half of her classes are in the Resource room where she will work on Science, Math, Sign Language and other skills, with Language Arts, PE, and Social Studies in other classrooms. It's a good balance of inclusion and support, I think, and we can adjust her schedule as need be.
As for me, I have the next two weeks to get organized and catch up on Medusa's Muse work before I start Graduate School. This is going to a very busy Fall!
Wednesday, August 20, 2008
When Hearing-Aids hurt
In preparation for school beginning next week, I cleaned up my daughter's hearing-aids, checked to make sure the batteries were strong, then brought them to where my daughter was sitting with her dad eating a Popsicle.
"Time to wear your hearing-aids." I said. "You need to get used to them again for school."
She'd had most of the summer off from wearing her hearing-aids because she'd outgrown her ear-molds and then it took time to get new ones made and a follow up appointment to have the hearing-aids adjusted. We'd switched to Stanford Audiology for her hearing needs, which has an excellent pediatric program. The audiologist is very skilled at working with children and picking up on their subtle clues to determine what the child can and cannot hear. Queen Teen warmed up to her immediately on the first visit. We picked up Queen Teen's new aids on the third visit. The doctor adjusted the volume after discovering Queen Teen could tolerate a higher threshold of sound than anyone thought. The moment the doctor put the new aids into Queen Teen's ears, before even turning them on, Queen Teen burst into tears.
"I don't understand what I even have to wear them! It doesn't make any sense."
The tears kept falling while the doctor worked to set the aids properly, visibly shaken by Queen Teen's tears. I kept wiping Queen Teen's nose and eyes while holding her close and encouraged the doctor to just keep going. I know my daughter; she won't stop crying until the hearing aids are out.
Back home, I put the aids away, thinking I would give her a bit of a break to get used to the idea again. But every time we talked about it, she'd just start crying again.
And then my husband had surgery, and the dog got mauled, and then Queen Teen had dental surgery, all within one week of each other, so the hearing aids were ignored as I dealt with the immediate crisis my family was in.
One week before school, I put the hearing aids into Queen Teen's ears, telling her she would wear them for an hour to "get used to them again." She wrapped her arms around herself and burst into tears. I decided to ignore the tears, believing if I was tough she'd stop being hysterical and put up with the aids for one hour. Thirty minutes later, she was still weeping. I tried consoling her, talking to her, joking with her. I tried putting in a movie to distract her, but that only seemed to make things worse.
"They don't sound right," she said between sobs. The she started crying so hard she couldn't breath.
I took out her hearing-aids. She kept crying. She said the aids didn't help her and she didn't understand why she had to wear them. Nothing I said, not reasoning, begging, pleading, or logic helped her understand WHY she had to wear her hearing aids. I explained she wasn't the only child in the world who wore hearing aids but she said she didn't believe me.
When she calmed down after I left the room, I overheard her talking to herself. "I don't know why. I just don't know why. They don't help me. So why do I have to wear them."
This was more than being stubborn about wearing her hearing-aids. She cried like her heart was broken, like she was the ONLY person in the ENTIRE WORLD who had ataxia and couldn't see very well and had to wear hearing aids. She kept repeating over and over that she didn't understand and I realized it wasn't just about the hearing-aids, it was about everything. Thirteen is hard enough without trying to cope with multiple disabilities.
After talking with her elementary school teacher, I decided to let school work on the hearing aids issue. Since she wears them at school, perhaps it will make more sense to her to wear them then. Home is her retreat, her respit from braille and sign language and PT. Plus, children always cry harder when their mom's are in the room, as if they're saying, "See, Mom. My heart broke. Can you fix it?"
No, my darling girl, I can't. But maybe your teacher can.
"Time to wear your hearing-aids." I said. "You need to get used to them again for school."
She'd had most of the summer off from wearing her hearing-aids because she'd outgrown her ear-molds and then it took time to get new ones made and a follow up appointment to have the hearing-aids adjusted. We'd switched to Stanford Audiology for her hearing needs, which has an excellent pediatric program. The audiologist is very skilled at working with children and picking up on their subtle clues to determine what the child can and cannot hear. Queen Teen warmed up to her immediately on the first visit. We picked up Queen Teen's new aids on the third visit. The doctor adjusted the volume after discovering Queen Teen could tolerate a higher threshold of sound than anyone thought. The moment the doctor put the new aids into Queen Teen's ears, before even turning them on, Queen Teen burst into tears.
"I don't understand what I even have to wear them! It doesn't make any sense."
The tears kept falling while the doctor worked to set the aids properly, visibly shaken by Queen Teen's tears. I kept wiping Queen Teen's nose and eyes while holding her close and encouraged the doctor to just keep going. I know my daughter; she won't stop crying until the hearing aids are out.
Back home, I put the aids away, thinking I would give her a bit of a break to get used to the idea again. But every time we talked about it, she'd just start crying again.
And then my husband had surgery, and the dog got mauled, and then Queen Teen had dental surgery, all within one week of each other, so the hearing aids were ignored as I dealt with the immediate crisis my family was in.
One week before school, I put the hearing aids into Queen Teen's ears, telling her she would wear them for an hour to "get used to them again." She wrapped her arms around herself and burst into tears. I decided to ignore the tears, believing if I was tough she'd stop being hysterical and put up with the aids for one hour. Thirty minutes later, she was still weeping. I tried consoling her, talking to her, joking with her. I tried putting in a movie to distract her, but that only seemed to make things worse.
"They don't sound right," she said between sobs. The she started crying so hard she couldn't breath.
I took out her hearing-aids. She kept crying. She said the aids didn't help her and she didn't understand why she had to wear them. Nothing I said, not reasoning, begging, pleading, or logic helped her understand WHY she had to wear her hearing aids. I explained she wasn't the only child in the world who wore hearing aids but she said she didn't believe me.
When she calmed down after I left the room, I overheard her talking to herself. "I don't know why. I just don't know why. They don't help me. So why do I have to wear them."
This was more than being stubborn about wearing her hearing-aids. She cried like her heart was broken, like she was the ONLY person in the ENTIRE WORLD who had ataxia and couldn't see very well and had to wear hearing aids. She kept repeating over and over that she didn't understand and I realized it wasn't just about the hearing-aids, it was about everything. Thirteen is hard enough without trying to cope with multiple disabilities.
After talking with her elementary school teacher, I decided to let school work on the hearing aids issue. Since she wears them at school, perhaps it will make more sense to her to wear them then. Home is her retreat, her respit from braille and sign language and PT. Plus, children always cry harder when their mom's are in the room, as if they're saying, "See, Mom. My heart broke. Can you fix it?"
No, my darling girl, I can't. But maybe your teacher can.
Friday, August 15, 2008
"She's 13"
Yesterday I took Queen Teen to Mervyn's for a little back-to-school shopping. At first she was cheerful and silly, giggling at the stuffed puppies and feeling proud of herself every time she navigated around an obstacle in the aisles. And then, without warning or provocation, her face set in a determined frown and her eyes focused downward. Nothing I did or said made any difference.
"Look at this cute shirt! It's even red, your favorite. Do you like it?"
"I don't know," Queen Teen responded without looking at the shirt.
I held it under her nose. "It feels soft. Would you like to wear it to school?"
"I don't know."
"Maybe I should just buy you uniforms again. You looked cute in your school uniform."
"I don't know."
"Really? You don't know. Then I SHOULD buy a uniform because then you won't have to decide what to wear at all. Yep, I think a blue uniform would be good."
She scowled at me. Well, at least she made eye contact for a moment.
We managed to buy a pair of pants and two shirts, then went to the register to pay. Queen Teen barely cracked a smile when one of her friends from elementary school stopped to say hi. They're both going to the same Jr High this year and she was shopping for school clothes with her mom too.
"Did you have fun this summer?" Queen Teen's friend asked.
Queen Teen looked at her for a moment then stared at her feet again. She shrugged.
I said, "She's just getting over a cold, so she may be feeling tired."
"I had a cold too. No fun," her friend replied. Then she dashed off to catch up with her mom. My daughter didn't notice she was gone.
Great! She has maybe two real friends and she ignores them when they say hello. Wonderful! She'll be sitting by herself every lunch for sure!
The woman at the register asked me, "Is she feeling okay?"
I shrugged. "Who knows. She's 13."
"Ah.... I see." The woman gave me a knowing smiled and nodded. "I know all about 13."
Every time I tell someone that I get the same response; that completely understanding, 13 is rough you poor thing hang in there it will get better in a few years I'm so glad it's not me, smile. Even people who don't have children give me that look because we ALL know what 13 is like: morose, temperamental, and bitter. Saying "she's 13" is like saying "she has a head ache," or "she has a tummy ache." Of course, we all say, nodding with a sympathetic smile. She'll get over it in maybe... three or five years. Poor dear.
When I told my hubby what happened he asked, "What set her off?"
"She's just 13."
He sighed. "How long does that go on?"
"Look at this cute shirt! It's even red, your favorite. Do you like it?"
"I don't know," Queen Teen responded without looking at the shirt.
I held it under her nose. "It feels soft. Would you like to wear it to school?"
"I don't know."
"Maybe I should just buy you uniforms again. You looked cute in your school uniform."
"I don't know."
"Really? You don't know. Then I SHOULD buy a uniform because then you won't have to decide what to wear at all. Yep, I think a blue uniform would be good."
She scowled at me. Well, at least she made eye contact for a moment.
We managed to buy a pair of pants and two shirts, then went to the register to pay. Queen Teen barely cracked a smile when one of her friends from elementary school stopped to say hi. They're both going to the same Jr High this year and she was shopping for school clothes with her mom too.
"Did you have fun this summer?" Queen Teen's friend asked.
Queen Teen looked at her for a moment then stared at her feet again. She shrugged.
I said, "She's just getting over a cold, so she may be feeling tired."
"I had a cold too. No fun," her friend replied. Then she dashed off to catch up with her mom. My daughter didn't notice she was gone.
Great! She has maybe two real friends and she ignores them when they say hello. Wonderful! She'll be sitting by herself every lunch for sure!
The woman at the register asked me, "Is she feeling okay?"
I shrugged. "Who knows. She's 13."
"Ah.... I see." The woman gave me a knowing smiled and nodded. "I know all about 13."
Every time I tell someone that I get the same response; that completely understanding, 13 is rough you poor thing hang in there it will get better in a few years I'm so glad it's not me, smile. Even people who don't have children give me that look because we ALL know what 13 is like: morose, temperamental, and bitter. Saying "she's 13" is like saying "she has a head ache," or "she has a tummy ache." Of course, we all say, nodding with a sympathetic smile. She'll get over it in maybe... three or five years. Poor dear.
When I told my hubby what happened he asked, "What set her off?"
"She's just 13."
He sighed. "How long does that go on?"
Thursday, August 7, 2008
Summertime is Not for Wimps
Ah yes... it's that wonderful time of year again. Summer. When all the little children are home with their parents spending quality time with each other while trying not to drive one another crazy. Or maybe the children ARE trying to drive their parents nuts? I know mine is. Being 13, bored, and stuck in the house because you can't stand the heat means you feel entitled to WHINE non-stop all day long. "I'm bored." "There's nothing to do." "I don't like that movie!" "I don't know what to do." "I hate that game!" On and on it goes while I try hard to focus on the positive (we're spending more time together. That must be good, right?) and think of new, creative tasks to keep her busy.
To be fair, this summer has been especially difficult. Not as bad as last year when she had surgery, but definitely hard.
First, her step-dad had bariatric surgery and is now home recovering. Things are going well and he's getting stronger by the minute, but it meant he and I were away for several days while she stayed home with her grandparents. She was happy to see her grandparents, who she adores, but not so happy with both parents disappearing to San Francisco for four days. Then, when we got home, her dad went to bed and I rushed around trying to get everything set up for him. Queen Teen and I took a long walk to our local cafe the following day, which helped. However, I've been so busy taking care of Rick she's had to play by herself a lot. She tries, but when you're 13 and don't know if you still like your doll house or not, playing by yourself becomes a challenge.
At the same time, I've been taking care of the family dog who was attacked at the kennel by another dog. One of those weird, completely unprovoked accidents. Our dog, Bourre, was seriously injured and had to be rushed to the vet for surgery on both front legs and paws. She then spent four days recovering there. I brought Bourre home on tuesday and happily she's doing great. What a relief. Queen Teen was very worried about both the dog and her dad. She kept a thoughtful distance from both, waiting to see if they were alright. Now that Rick can get up and is moving around more, she smiles and hugs him and they joke and tease each other in the morning again. As for Bourre, Queen Teen talks to her with a gentle voice and tries very hard not to bump the dog with her walker.
Then yesterday Queen Teen had dental surgery. Finally! She broke her front tooth back in February and it took this long to get into the surgeon. Plus, her adult teeth were coming in around her baby teeth rather than pushing the baby teeth out, so seven baby teeth had to be pulled. The dental surgery center is in Windsor and is FANTASTIC. These people are truly dedicated to helping children and providing dental care, despite Medi-Cal cuts and other insurance problems. If I ever win the lottery, I'm writing them a big, fat check.
The surgery went well and she recovered quickly, but woke up this morning with a bad cold. Sigh. Luckily she isn't in pain, so today she's lounging in bed watching movies while blowing her nose every ten minutes.
Two-and-a-half more weeks of summer, and then she and I start school on the same day; she Jr. High and me San Francisco State Graduate School. Anyone have any good ideas to keep a teen-ager busy?
To be fair, this summer has been especially difficult. Not as bad as last year when she had surgery, but definitely hard.
First, her step-dad had bariatric surgery and is now home recovering. Things are going well and he's getting stronger by the minute, but it meant he and I were away for several days while she stayed home with her grandparents. She was happy to see her grandparents, who she adores, but not so happy with both parents disappearing to San Francisco for four days. Then, when we got home, her dad went to bed and I rushed around trying to get everything set up for him. Queen Teen and I took a long walk to our local cafe the following day, which helped. However, I've been so busy taking care of Rick she's had to play by herself a lot. She tries, but when you're 13 and don't know if you still like your doll house or not, playing by yourself becomes a challenge.
At the same time, I've been taking care of the family dog who was attacked at the kennel by another dog. One of those weird, completely unprovoked accidents. Our dog, Bourre, was seriously injured and had to be rushed to the vet for surgery on both front legs and paws. She then spent four days recovering there. I brought Bourre home on tuesday and happily she's doing great. What a relief. Queen Teen was very worried about both the dog and her dad. She kept a thoughtful distance from both, waiting to see if they were alright. Now that Rick can get up and is moving around more, she smiles and hugs him and they joke and tease each other in the morning again. As for Bourre, Queen Teen talks to her with a gentle voice and tries very hard not to bump the dog with her walker.
Then yesterday Queen Teen had dental surgery. Finally! She broke her front tooth back in February and it took this long to get into the surgeon. Plus, her adult teeth were coming in around her baby teeth rather than pushing the baby teeth out, so seven baby teeth had to be pulled. The dental surgery center is in Windsor and is FANTASTIC. These people are truly dedicated to helping children and providing dental care, despite Medi-Cal cuts and other insurance problems. If I ever win the lottery, I'm writing them a big, fat check.
The surgery went well and she recovered quickly, but woke up this morning with a bad cold. Sigh. Luckily she isn't in pain, so today she's lounging in bed watching movies while blowing her nose every ten minutes.
Two-and-a-half more weeks of summer, and then she and I start school on the same day; she Jr. High and me San Francisco State Graduate School. Anyone have any good ideas to keep a teen-ager busy?
Sunday, July 27, 2008
Triumph
We finally got the authorization from CCS to begin Physical Therapy, although only six visits, which means PT will be more of a weekly consultation than real, in depth therapy. I get the feeling CCS believes PT is a waste of time. Fine. I'll take what they'll give us. Besides, Queen Teen needs daily exercise to make any difference and she's doing that on her own.
Her therapist is the same person who worked with her after her surgery last year and he's very knowledgeable. Queen Teen remembered him and eagerly showed him what she can do. "See," she said with a grin on her face and her arms held out wide, "I can stand up without holding on to anything."
"Very good," he replied while staring at her knees. He took some measurements of the curve of her each: 18 degrees in one and 5 degrees in the other. Queen Teen sighed. She hates being examined. With as many appointments as she's had over the years I don't blame her.
I told him about the exercises she and I have been doing and he said they were good, then he added rising up on her toes. He also encouraged swimming. "The key is to make it fun, or she'll stop doing it." He smiled. "But if she's already doing them on her own, I don't think you'll have to worry about that."
The PT agreed with the recommendation of the PT at the clinic that exercise could save her knees and that we shouldn't put her back in braces. The curve probably won't go away but if she keeps building her muscles and stretching the ligaments, it shouldn't get any worse. The last of my fears vanished. We have to give this a try.
Today she cautiously walked across the kitchen, swaying from side to side, arms flung wide for balance. I fought the urge to grab her to protect her from falling. Instead I gripped the counter and said, "Yay! That's so great!"
She reached the kitchen table and turned to look at me, beaming with pride. "See. I can do it. I can be stronger! I didn't fall down." Then she carefully cruised back to her walker by the kitchen door, her bare feet loudly slapping the linoleum.
Success! She felt the pride of hard work and how she can grow stronger, something that will stay with her as she tackles new challenges in her life. Everything is so hard for her, everything must feel so out of reach, but in that little walk from kitchen door to table, a distance of ten feet, she experienced the sensation of triumph.
If we try so hard to protect our children from pain and misfortune, they never learn how to pick themselves up from the floor and never understand that they can heal. If I put braces back on Queen Teen's legs, she will never know how it feels to take control of her own body and her own life. Without success, we diminish. Why bother? Nothing will work. No matter what I do, I'll never get any better.
Queen Teen is beginning to understand just how capable and strong she actually is.
Her therapist is the same person who worked with her after her surgery last year and he's very knowledgeable. Queen Teen remembered him and eagerly showed him what she can do. "See," she said with a grin on her face and her arms held out wide, "I can stand up without holding on to anything."
"Very good," he replied while staring at her knees. He took some measurements of the curve of her each: 18 degrees in one and 5 degrees in the other. Queen Teen sighed. She hates being examined. With as many appointments as she's had over the years I don't blame her.
I told him about the exercises she and I have been doing and he said they were good, then he added rising up on her toes. He also encouraged swimming. "The key is to make it fun, or she'll stop doing it." He smiled. "But if she's already doing them on her own, I don't think you'll have to worry about that."
The PT agreed with the recommendation of the PT at the clinic that exercise could save her knees and that we shouldn't put her back in braces. The curve probably won't go away but if she keeps building her muscles and stretching the ligaments, it shouldn't get any worse. The last of my fears vanished. We have to give this a try.
Today she cautiously walked across the kitchen, swaying from side to side, arms flung wide for balance. I fought the urge to grab her to protect her from falling. Instead I gripped the counter and said, "Yay! That's so great!"
She reached the kitchen table and turned to look at me, beaming with pride. "See. I can do it. I can be stronger! I didn't fall down." Then she carefully cruised back to her walker by the kitchen door, her bare feet loudly slapping the linoleum.
Success! She felt the pride of hard work and how she can grow stronger, something that will stay with her as she tackles new challenges in her life. Everything is so hard for her, everything must feel so out of reach, but in that little walk from kitchen door to table, a distance of ten feet, she experienced the sensation of triumph.
If we try so hard to protect our children from pain and misfortune, they never learn how to pick themselves up from the floor and never understand that they can heal. If I put braces back on Queen Teen's legs, she will never know how it feels to take control of her own body and her own life. Without success, we diminish. Why bother? Nothing will work. No matter what I do, I'll never get any better.
Queen Teen is beginning to understand just how capable and strong she actually is.
Wednesday, July 23, 2008
A Visit to the Den of Chaos
My daughter,Queen Teen, used to be afraid to leave the house. Every trip to the grocery store left her trembling and sometimes nauseous. As she got older,however, her fear diminished until we could go for long walks without panic. She began to hate sitting around the house and wanted to go on trips. We took it slow, first with day trips only a couple of hours from home, then overnight. So now we're up to spending a few days away from home visiting friends. Our first stop: The Den of Chaos.
Maybe taking Queen Teen to a house affectionately known as the Den of Chaos sounds cruel, and I admit I was a bit nervous. Four children live there, aged ten and under, all rambunctious, loud, and playful. How was my mostly blind-deaf, wobbly, moody teen-aged daughter going to handle that much confusion and NOISE?
The first day everyone was a little shy, so the children mostly watched Sponge Bob while staring at each other. Boo-bug warmed up quickest and brought Queen Teen several treasures, including a stuffed bear and a Cinderella dress. Four year old Captain Adventure was fascinated with Queen Teen's walker and had to be reminded several times to leave it alone. Queen Teen and Eldest had met before but it took them a while to figure out how to play. Danger Mouse quietly watched Queen Teen and figured out that she needed to stand very close to Queen Teen to be heard. By day two, all the children were playing and coloring and chatting while exploring the house and showing off for each other. Queen Teen even conquered her fear and climbed the steep stairs to see their bedrooms and play. Dinners were hectic, bedtimes chaotic, the noise unending, and the laughter constant. Queen Teen took it all in with a regal smile. By day three when we had to leave, Queen Teen felt like a regular Denizen and declared, "This place is fun!" Eldest said that Queen Teen was "cool."
After a visit to the Den of Chaos, I think she's ready for an amusement park.
Maybe taking Queen Teen to a house affectionately known as the Den of Chaos sounds cruel, and I admit I was a bit nervous. Four children live there, aged ten and under, all rambunctious, loud, and playful. How was my mostly blind-deaf, wobbly, moody teen-aged daughter going to handle that much confusion and NOISE?
The first day everyone was a little shy, so the children mostly watched Sponge Bob while staring at each other. Boo-bug warmed up quickest and brought Queen Teen several treasures, including a stuffed bear and a Cinderella dress. Four year old Captain Adventure was fascinated with Queen Teen's walker and had to be reminded several times to leave it alone. Queen Teen and Eldest had met before but it took them a while to figure out how to play. Danger Mouse quietly watched Queen Teen and figured out that she needed to stand very close to Queen Teen to be heard. By day two, all the children were playing and coloring and chatting while exploring the house and showing off for each other. Queen Teen even conquered her fear and climbed the steep stairs to see their bedrooms and play. Dinners were hectic, bedtimes chaotic, the noise unending, and the laughter constant. Queen Teen took it all in with a regal smile. By day three when we had to leave, Queen Teen felt like a regular Denizen and declared, "This place is fun!" Eldest said that Queen Teen was "cool."
After a visit to the Den of Chaos, I think she's ready for an amusement park.
Wednesday, July 16, 2008
Time to Do My Exercises
My daughter has accepted the challenge to save her knees and in her usual single-minded and optimistic way has begun exercising her legs on her own. She found the red elastic strap we used when she was strengthening her legs after her surgery and started working out. I went into her bedroom two weeks ago and found her on the floor with the strap wrapped around her leg. She was trying to pull it herself to create resistance, but instead she kept pulling herself off balance and falling over.
"What are you doing?" I asked.
"Getting strong," she replied as she adjusted the strap around her ankle.
"Can I help?"
"Yes." She unwrapped the strap and handed it up to me. "I have to make my knees stronger so I can walk better."
"Let's do it, then."
She grinned and lay on her tummy. I put her foot through the strap and held the back of her knee securely to keep it from flopping sideways. "Ready?"
"Ready," she said, then pulled her foot toward her while I held the other end of the strap, keeping it tense. She did twenty repetitions on each leg, then she sat on the edge of her bed and we did the same thing, only this time she lifted her foot upwards. I could feel her muscles and tendons working under my hands as she held her foot out, the tension creating a strain and forcing them to engage. She grinned.
This is why I can't just put braces on her legs. Yes, we may be taking a risk that no amount of exercise will improve things and her knees will deteriorate to the point where they won't be able to support her body weight. But this is obviously a risk my daughter is willing to take. I support her strength and determination. She isn't giving up, so why should I.
Every afternoon she finds the red strap and calls to me. "Time to do my exercises."
"What are you doing?" I asked.
"Getting strong," she replied as she adjusted the strap around her ankle.
"Can I help?"
"Yes." She unwrapped the strap and handed it up to me. "I have to make my knees stronger so I can walk better."
"Let's do it, then."
She grinned and lay on her tummy. I put her foot through the strap and held the back of her knee securely to keep it from flopping sideways. "Ready?"
"Ready," she said, then pulled her foot toward her while I held the other end of the strap, keeping it tense. She did twenty repetitions on each leg, then she sat on the edge of her bed and we did the same thing, only this time she lifted her foot upwards. I could feel her muscles and tendons working under my hands as she held her foot out, the tension creating a strain and forcing them to engage. She grinned.
This is why I can't just put braces on her legs. Yes, we may be taking a risk that no amount of exercise will improve things and her knees will deteriorate to the point where they won't be able to support her body weight. But this is obviously a risk my daughter is willing to take. I support her strength and determination. She isn't giving up, so why should I.
Every afternoon she finds the red strap and calls to me. "Time to do my exercises."
Friday, July 11, 2008
No matter how well you're coping, you still have bad days.
Today is one of those bad days. I go along for weeks, feeling competent, hopeful, cheerful and organized. I can juggle all 12 balls with an eye on the horizon and not skip a beat. Then, suddenly, a weird feeling of exhaustion will creep up from my toes until my hands go numb and I drop every single ball on the floor where they bounce around crazily until rolling out of sight. I'm stunned, overwhelmed with emotion and angst. To make it worse, I burst into tears. It feels just like when I first learned something was "wrong" with my daughter. That moment presses in on me until my heart feels too full to beat. I thought I was coping so well, I wail. What the hell is wrong with me?
Relax. Nothings wrong. You're just having a Blue Day. They happen now and then, even to the most capable and intelligent parents alive. Anything can trigger it; new shoes already being worn down at the toes, running out of hearing aid batteries, a form you forgot, a phone call from the Regional Center Case Manager. Even something simple, like more weeds in the garden, bring on the tears.
All parents have bad days, but the parents of special needs children get an extra helping of the blues. The trick is to be kind to yourself. Don't suppress your fears or grief, but don't fixate on them either. Take a deep breath, tell yourself you're okay, then do something nice for yourself. In time, you'll find all those balls you dropped and will begin to juggle again, adding one ball at a time. It might take an hour, or a week, but you will be okay.
Today is my bad day. I heard the words "trying not to give up" and wammo, I was on the floor gasping for breath (not really. Metaphorically). I used to freak out when I had a bad day and wonder if I needed more therapy or maybe medication, but over time I understood that having a bad is a normal part of being the mother of a child with disabilities. You can't be perfect and together at all times of day and night, no matter how much you'd like to. I've learned to let myself play The Sims, eat chocolate if I wish, watch a Johnny Depp dvd, take myself for a walk, or dance in the living room while listening to Fat Boy Slim. If the blues get really bad, I call a friend. That was an important step for me. I was attached to the idea that I must be strong ALL THE TIME because if I didn't keep a smile on my face everyone else would fall apart. Um... no, Terena. You may as well insist you learn to fly without an airplane as keep a smile on your face 100% of the time. Besides, you'll creep everyone out (doesn't she ever stop smiling?)
So, that being said, I'm off to crank up the music really loud and "dance away the heart-ache" as the song says. Tomorrow will more than likely be less blue.
Relax. Nothings wrong. You're just having a Blue Day. They happen now and then, even to the most capable and intelligent parents alive. Anything can trigger it; new shoes already being worn down at the toes, running out of hearing aid batteries, a form you forgot, a phone call from the Regional Center Case Manager. Even something simple, like more weeds in the garden, bring on the tears.
All parents have bad days, but the parents of special needs children get an extra helping of the blues. The trick is to be kind to yourself. Don't suppress your fears or grief, but don't fixate on them either. Take a deep breath, tell yourself you're okay, then do something nice for yourself. In time, you'll find all those balls you dropped and will begin to juggle again, adding one ball at a time. It might take an hour, or a week, but you will be okay.
Today is my bad day. I heard the words "trying not to give up" and wammo, I was on the floor gasping for breath (not really. Metaphorically). I used to freak out when I had a bad day and wonder if I needed more therapy or maybe medication, but over time I understood that having a bad is a normal part of being the mother of a child with disabilities. You can't be perfect and together at all times of day and night, no matter how much you'd like to. I've learned to let myself play The Sims, eat chocolate if I wish, watch a Johnny Depp dvd, take myself for a walk, or dance in the living room while listening to Fat Boy Slim. If the blues get really bad, I call a friend. That was an important step for me. I was attached to the idea that I must be strong ALL THE TIME because if I didn't keep a smile on my face everyone else would fall apart. Um... no, Terena. You may as well insist you learn to fly without an airplane as keep a smile on your face 100% of the time. Besides, you'll creep everyone out (doesn't she ever stop smiling?)
So, that being said, I'm off to crank up the music really loud and "dance away the heart-ache" as the song says. Tomorrow will more than likely be less blue.
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