Or so it seems.
Queen Teen had another audiology appointment last week so she and I drove down to Palo Alto the night before and stayed in an inexpensive hotel (yes, there actually are inexpensive hotels in Palo Alto. Well... sort of). I decided to go down the night before the appointment to try and make it fun for Queen Teen. We had McDonalds for dinner in our cozy hotel room and watched TV, which was a novelty since we don't have TV at home. Then in the morning we went for a walk in the sunshine at the Stanford Mall and watched the shops open and the people wake up with their early morning Lattes. Queen Teen especially liked all the Springtime flowers that fill every section of the shopping center, the yellow pansies and exotic orchids, iris and daffodil, cherry blossoms and jasmine, and the dormant roses just starting to stir. She also loved all the fountains and made a wish in one that looked like a water fall, complete with bronze salmon. I bought her a cute doll that was on sale at a children's furniture store (she loves looking at the baby cribs), and then it was time for audiology.
Her smile vanished.
During the appointment, the audiologist rechecked her hearing to see if there were any changes. Queen Teen was a trooper and did as the doctor asked, but every time she had to respond to a tone, she would say, "Oh brother." It started to get funny. Beep... Oh brother... beep.... Oh brother... beep... At least she was consistent, which made the testing easier.
Then the doctor checked the ear molds of her hearing aids and that's when we discovered they were too small. VERY TOO SMALL. They didn't even reach the inner cartilage of her ear! I was surprised she had outgrown them so quickly (it had only been about 8 months), because before it had taken a couple of years for them to become too small. The doctor told me that at this age (13), Queen Teen will probably outgrow them every six months. I think her ears are growing as fast as her feet, probably faster than the rest of her body, which seems to need new clothes every five months.
The doctor made new ear molds and thankfully Queen Teen was cooperative and even giggled. "That feels funny." I told her the doctor was putting frosting in her ear and she laughed.
There does seem to be a reduction in Queen Teen's hearing, but it is too soon to tell for sure. It's common for there to be fluctuations in hearing tests, so we'll need to wait and see what the next few tests show before we can say for certain that her hearing is getting worse. However, the doctor agreed with me that Queen Teen needs to learn sign language, simply because if her hearing loss is related to neuropathy, which is a neurological disorder, rather than a simple hearing problem, then she will have fluctuations in her hearing daily and hearing aids won't be able to make up for that.
Anyone know a good place to learn Sign Language quickly? I need a crash course. I took it in college, but that was 16 years ago!
Monday, March 2, 2009
Monday, February 23, 2009
President's Day Week and Rain Are a Bad Combination
For some odd, unknown reason, schools in our district close for a week to celebrate President's Day. George Washington and Abraham Lincoln get the entire week rather than a Monday. They are very important people in America's history, but do we really need a week off from school to think about them?
Queen Teen's district feels that we do, so she and I got to spend an entire week together stuck at home fending off boredom. To make it more fun, it rained almost the entire time.
Queen Teen hates the rain. She is a sun worshiper. You can see her entire body glow on sunny days as she soaks up every ray of blue sky. She smiles and laughs, is attentive and even seems to hear better. On cloudy, rainy days, she is withdrawn and sullen. The longer it rains, the more miserable she becomes. I am the exact opposite: I LOVE the rain. When it hasn't rained in several weeks I start to get itchy, feeling as thirsty as the gold tinged hills of California. When the sun is out I hide under a wide brimmed hat and long sleeves, avoiding as much contact with those sunbeams as possible.
I should live in Ireland.
So, there we were, Queen Teen scowling at the rain with nothing to do, and me scowling at her scowling at the rain, longing to go for a walk in it. On Saturday, the first day of vacation, we had Dennis to distract us. By Sunday afternoon, Queen Teen was miserable, lying on her bedroom floor, sighing dramatically and proclaiming, "There's nothing to do." Sunday turned into an even rainier Monday, and she glared at me like I was a terrible mother because I couldn't make it stop raining. Gee, sorry kid. I appreciate your faith in me, but even a Super Mom can't control the weather. No matter what I found for us to do, from coloring to playing with her Groovy Girls to watching Sponge Bob, she remained morose.
On Tuesday, we were saved by the arrival of the greatest child-care worker in the world, A! I got to run away to school (they didn't give me the week off!) and Queen Teen got to whine at someone new. Actually the distraction of a new person broke the boredom and on Wednesday when A returned everything improved because the rain finally stopped and Queen Teen got to go for a walk in the sun. A bleak sun, but sunshine non-the-less. When I returned from school that afternoon my daughter was smiling and seemed glad to see me.
We had one more day to get through, Thursday, which thankfully remained dry, although not so sunny. I spent most of the day pushing Queen Teen in her chair walking around town, just happy to be out of the house with a happy girl. We ate the cookies we bought at the bakery in the town square and talked about clouds and the other people in the park, wondering where they worked and what their names were.
Friday I drove her to visit her dad for the weekend, and when I drove home, all alone in my car with bad 80's music blaring on the radio, I felt my shoulders relax for the first time all week. Why do I get so worked up when Queen Teen is unhappy? I simply can't stand it when she's sad. Every alarm in my head goes off like air-raid warnings. "Mayday. Mayday. Queen Teen is bored! Emergency! Prepare Plan A for depression aversion. Repeat, Prepare Plan A for depression aversion!"
Depression is the real enemy, not boredom. Boredom is only the precursor to depression, so if I can head off boredom the moment it starts, we can avoid the depression that causes Queen Teen to cry and lash out angrily, hitting people and throwing toys. She gets frustrated that she can't do what she wants because of her hand tremors, like color inside the lines or play with her doll house without knocking something over. All of her friends from elementary school have moved on, leaving her behind as they chase boys and talk on cell phones. Queen Teen understands profoundly how different she is from everyone else, including the other children with disabilities. She doesn't fit in with the blind kids because she's also deaf, but doesn't fit in with the deaf kids because she's also blind. She is very, very alone, and when she doesn't have the distraction of school or walks or sunny days, that feeling is so overwhelming she lashes out at everyone around her.
That's why I frantically try to keep her busy, while at the same time trying to work and keep up with my homework from graduate school. It is exhausting keeping up this constant song and dance for my daughter's entertainment, but the depression is far worse.
I had Saturday all to myself to do nothing but rest and play on the Internet. I managed to get a little work done, but mostly I wasted a lot of time, doing unproductive things like wandering around MySpace. My hubby and I saw Slum dog Millionaire and The Pink Panther 2 (I'll see anything with Steve Martin). We had a romantic dinner and drank too much wine and got to reconnect as people, not only as parents.
By Sunday, the rain had returned and I drove to Santa Rosa to meet Queen Teen and her dad. When I found them in the restaurant, she was crying. Her dad didn't know what to do. I picked up a napkin, wiped her tears, fixed her hair, sat beside her and held her hand. The tears slowly vanished and she agreed to eat her lunch. Her dad looked at me perplexed.
"What was that about?" he asked.
I shrugged. "Who knows. She's thirteen."
Queen Teen finished her lunch and grinned at me.
Queen Teen's district feels that we do, so she and I got to spend an entire week together stuck at home fending off boredom. To make it more fun, it rained almost the entire time.
Queen Teen hates the rain. She is a sun worshiper. You can see her entire body glow on sunny days as she soaks up every ray of blue sky. She smiles and laughs, is attentive and even seems to hear better. On cloudy, rainy days, she is withdrawn and sullen. The longer it rains, the more miserable she becomes. I am the exact opposite: I LOVE the rain. When it hasn't rained in several weeks I start to get itchy, feeling as thirsty as the gold tinged hills of California. When the sun is out I hide under a wide brimmed hat and long sleeves, avoiding as much contact with those sunbeams as possible.
I should live in Ireland.
So, there we were, Queen Teen scowling at the rain with nothing to do, and me scowling at her scowling at the rain, longing to go for a walk in it. On Saturday, the first day of vacation, we had Dennis to distract us. By Sunday afternoon, Queen Teen was miserable, lying on her bedroom floor, sighing dramatically and proclaiming, "There's nothing to do." Sunday turned into an even rainier Monday, and she glared at me like I was a terrible mother because I couldn't make it stop raining. Gee, sorry kid. I appreciate your faith in me, but even a Super Mom can't control the weather. No matter what I found for us to do, from coloring to playing with her Groovy Girls to watching Sponge Bob, she remained morose.
On Tuesday, we were saved by the arrival of the greatest child-care worker in the world, A! I got to run away to school (they didn't give me the week off!) and Queen Teen got to whine at someone new. Actually the distraction of a new person broke the boredom and on Wednesday when A returned everything improved because the rain finally stopped and Queen Teen got to go for a walk in the sun. A bleak sun, but sunshine non-the-less. When I returned from school that afternoon my daughter was smiling and seemed glad to see me.
We had one more day to get through, Thursday, which thankfully remained dry, although not so sunny. I spent most of the day pushing Queen Teen in her chair walking around town, just happy to be out of the house with a happy girl. We ate the cookies we bought at the bakery in the town square and talked about clouds and the other people in the park, wondering where they worked and what their names were.
Friday I drove her to visit her dad for the weekend, and when I drove home, all alone in my car with bad 80's music blaring on the radio, I felt my shoulders relax for the first time all week. Why do I get so worked up when Queen Teen is unhappy? I simply can't stand it when she's sad. Every alarm in my head goes off like air-raid warnings. "Mayday. Mayday. Queen Teen is bored! Emergency! Prepare Plan A for depression aversion. Repeat, Prepare Plan A for depression aversion!"
Depression is the real enemy, not boredom. Boredom is only the precursor to depression, so if I can head off boredom the moment it starts, we can avoid the depression that causes Queen Teen to cry and lash out angrily, hitting people and throwing toys. She gets frustrated that she can't do what she wants because of her hand tremors, like color inside the lines or play with her doll house without knocking something over. All of her friends from elementary school have moved on, leaving her behind as they chase boys and talk on cell phones. Queen Teen understands profoundly how different she is from everyone else, including the other children with disabilities. She doesn't fit in with the blind kids because she's also deaf, but doesn't fit in with the deaf kids because she's also blind. She is very, very alone, and when she doesn't have the distraction of school or walks or sunny days, that feeling is so overwhelming she lashes out at everyone around her.
That's why I frantically try to keep her busy, while at the same time trying to work and keep up with my homework from graduate school. It is exhausting keeping up this constant song and dance for my daughter's entertainment, but the depression is far worse.
I had Saturday all to myself to do nothing but rest and play on the Internet. I managed to get a little work done, but mostly I wasted a lot of time, doing unproductive things like wandering around MySpace. My hubby and I saw Slum dog Millionaire and The Pink Panther 2 (I'll see anything with Steve Martin). We had a romantic dinner and drank too much wine and got to reconnect as people, not only as parents.
By Sunday, the rain had returned and I drove to Santa Rosa to meet Queen Teen and her dad. When I found them in the restaurant, she was crying. Her dad didn't know what to do. I picked up a napkin, wiped her tears, fixed her hair, sat beside her and held her hand. The tears slowly vanished and she agreed to eat her lunch. Her dad looked at me perplexed.
"What was that about?" he asked.
I shrugged. "Who knows. She's thirteen."
Queen Teen finished her lunch and grinned at me.
Wednesday, February 18, 2009
A Day With Cousin Dennis
Dennis from New Orleans came to California for a work related conference and then spent his free day with us in Healdsburg, a small town just south of us that has been completely transformed by the Sonoma County wine industry. When I was a child it was a farm town, complete with pick-up trucks and livestock. Now the town is filled with wine bars, bistros and BMW's. Too pricey for my lifestyle, but very pretty to look at.
Rick's brother Thor picked Dennis up in San Fran and the two drove to Healdsburg, meeting us at The Bear Republic, a brew pub with decent burgers. Queen Teen was excited to get out of the house, despite the rain. She adores her Uncle Thor, but couldn't remember Dennis who she last saw two years ago. At first she was shy, hiding under the brim of her baseball cap or peeking around my shoulder to stare at him. After a lunch of chicken strips and fries, she relaxed enough to smile at him and respond to his questions.
Dennis filled us in on the news from New Orleans; what's been rebuilt, what is gone, and how our family is doing. Overall it sounded like people were adapting to the new New Orleans, while still mourning the old. So many people were forced out of the city, either through economics or grief, but my family seems determined to stay, rebuilding once again, just as they've done for numerous generations. Hearing about the family made me homesick for a place that has never been my home. I'm not from Louisiana: I married a man who is. His family is very dear to me, especially because they have claimed my daughter as theirs.
Since I'm off the vino right now, I volunteered to be the driver so Rick could enjoy wine tasting with his brother and cousin. We stopped in a couple of tasting rooms, explored the town square and stopped in a toy shop where Queen Teen bought a soft soccer ball. Then we had coffee and hot chocolate at The Flying Goat cafe. This time Queen Teen sat beside Dennis and grinned at him while guzzling her chocolate.
When the rain started to come down harder and the wind turned icy, we decided to go. We took one more picture of Queen Teen and Dennis sitting on a stone bench carved to look like a pig (which I hope he'll give me a copy of soon), and then said our goodbyes. I hope it won't be another two years before we see Dennis again.
Rick's brother Thor picked Dennis up in San Fran and the two drove to Healdsburg, meeting us at The Bear Republic, a brew pub with decent burgers. Queen Teen was excited to get out of the house, despite the rain. She adores her Uncle Thor, but couldn't remember Dennis who she last saw two years ago. At first she was shy, hiding under the brim of her baseball cap or peeking around my shoulder to stare at him. After a lunch of chicken strips and fries, she relaxed enough to smile at him and respond to his questions.
Dennis filled us in on the news from New Orleans; what's been rebuilt, what is gone, and how our family is doing. Overall it sounded like people were adapting to the new New Orleans, while still mourning the old. So many people were forced out of the city, either through economics or grief, but my family seems determined to stay, rebuilding once again, just as they've done for numerous generations. Hearing about the family made me homesick for a place that has never been my home. I'm not from Louisiana: I married a man who is. His family is very dear to me, especially because they have claimed my daughter as theirs.
Since I'm off the vino right now, I volunteered to be the driver so Rick could enjoy wine tasting with his brother and cousin. We stopped in a couple of tasting rooms, explored the town square and stopped in a toy shop where Queen Teen bought a soft soccer ball. Then we had coffee and hot chocolate at The Flying Goat cafe. This time Queen Teen sat beside Dennis and grinned at him while guzzling her chocolate.
When the rain started to come down harder and the wind turned icy, we decided to go. We took one more picture of Queen Teen and Dennis sitting on a stone bench carved to look like a pig (which I hope he'll give me a copy of soon), and then said our goodbyes. I hope it won't be another two years before we see Dennis again.
Thursday, February 12, 2009
Mourning for Chocolate
(image from: Koichi Kamoshida/Getty Images)I don't mind being 42. In fact, in many ways it's really great. I feel emotionally and mentally stronger. I know what I want, what I need, and what I dislike. My boundaries are clearer and I'm not afraid to say no. In so many ways, being 40-something is magic.
Unfortunately, my body isn't keeping up with my spiritual growth.
On Monday, I visited my Chinese Medical doctor for another acupuncture treatment and we talked about the chronic pain and stomach trouble that has slowly gotten worse over the years. I've been to doctors and specialists and no one can find anything wrong, therefore the consensus is that my symptoms are stress induced. Really? Gee, I'm shocked.
Anyway, after being told to avoid stress and try to relax more (yeah, I'll get right on that), I started getting acupuncture treatments by a really good Chinese Medical doctor. Slowly some of my symptoms have improved, but not enough to make either of us happy. Time for drastic measures.
"You have to stop eating chocolate," he said.
I just stared at him.
"And you should avoid red wine, cheese and coffee."
I think I fainted.
He leaned across the table and folded his hands. "If you don't give up these things, I don't think I can help you."
"I don't drink coffee. Only decaf." My voice sounded breathless.
"It's not the caffeine. It's the tannins. Too drying. They create too much heat in your system which is causing the pain and acid reflux."
Then he reemphasized the point, as if telling me I had lost all my money and was bankrupt. "If you don't stop eating chocolate and drinking coffee, I can't help you."
I nodded and said, "Of course." But as I walked home from his office I knew I was in big trouble.
Chocolate is more than a treat to me: chocolate is way of life. I am a connoisseur of that delectable nectar. I can taste the difference between Ecuadorian chocolate and Peruvian chocolate. A Hershey bar is NOT chocolate, it contains chocolate. Same goes for Nestle. I love the smell, smoothness, bitterness, and flavor of good, strong, dark chocolate with just a touch of cream to even out the waxiness. It makes me shiver with delight and helps me smile when I doubt I will ever smile again.
And now, to save my health, I have to give it up.
To say I'm suffering from withdrawals is an understatement. But I have to ask myself, how badly do I want to be healthy? Is chocolate worth being sick all the time.
YES!!!!!!
I mean, of course not.
Last night, I ate the last bit of chocolate in my stockpile of chocolate I keep in my bedroom for emergencies. There is no more chocolate in the house. None. At all. Not even chocolate chips. I am 100% chocolate free. Lord help me.
Once the withdrawals end, I'll eliminate coffee. One thing at a time please, or I might go into shock!
Monday, February 9, 2009
Happy Birthday, Mom
My birthday was on Feb. 4th and this year my daughter went out with the babysitter and picked out a gift for me. The sitter told me Queen Teen went from store to store in our downtown, examining trinkets and books, scarves and hair pins, until she found what she wanted at a crystal, New-Age type store.
"That's it," she declared, pointing at the sparkling present. The sitter helped Queen Teen count out her money and the sales clerk wrapped it up in a ribboned box. Queen Teen was very proud of her gift and held it tightly in her hands all the way back home.
When I walked into the house that afternoon after driving back from school in San Fran, the sitter told me how hard Queen Teen hunted for the perfect gift, and that she mostly did it on her own.
"She knew what she wanted to give you, and she used her own money to do it," she said.
Later that day, Queen Teen, Rick and I sat at the table, eating the Gluten-Free birthday cake they had made for me, and then opened my presents. Rick bought me an expansion pack to The Sims that I wanted (I am Sims addict!). Then I opened the box from Queen Teen and pulled out a lavender, heart-shaped crystal dangling from a glass-beaded wire. It was so beautiful! Queen Teen giggled as I stared at it and Rick said, "Wow. She sure put my present to shame."
This is the first time my daughter has hunted so diligently for a gift for me and then used her own money to pay for it. And as I looked at the beautiful rainbow catcher, I realized she'd probably used every dime in her piggy-bank to buy it for me.
Of course she's bought me gifts before. Rick usually takes her to Big Lots and gives her ten dollars to pick something out for me. When she was four she gave me a Cosmopolitan magazine because the lady on the cover was "pretty." I still have it. And I treasure every single paper flower, flashlight and stationary kit that child has given me over the years. But this gift is so... grown up.
I hugged her tightly, and then she helped me decide where to hang it. It's now hanging in my kitchen window where it will capture the late afternoon sunshine, sending a cascade of rainbows across the counter tops.
"That's it," she declared, pointing at the sparkling present. The sitter helped Queen Teen count out her money and the sales clerk wrapped it up in a ribboned box. Queen Teen was very proud of her gift and held it tightly in her hands all the way back home.
When I walked into the house that afternoon after driving back from school in San Fran, the sitter told me how hard Queen Teen hunted for the perfect gift, and that she mostly did it on her own.
"She knew what she wanted to give you, and she used her own money to do it," she said.
Later that day, Queen Teen, Rick and I sat at the table, eating the Gluten-Free birthday cake they had made for me, and then opened my presents. Rick bought me an expansion pack to The Sims that I wanted (I am Sims addict!). Then I opened the box from Queen Teen and pulled out a lavender, heart-shaped crystal dangling from a glass-beaded wire. It was so beautiful! Queen Teen giggled as I stared at it and Rick said, "Wow. She sure put my present to shame."
This is the first time my daughter has hunted so diligently for a gift for me and then used her own money to pay for it. And as I looked at the beautiful rainbow catcher, I realized she'd probably used every dime in her piggy-bank to buy it for me.
Of course she's bought me gifts before. Rick usually takes her to Big Lots and gives her ten dollars to pick something out for me. When she was four she gave me a Cosmopolitan magazine because the lady on the cover was "pretty." I still have it. And I treasure every single paper flower, flashlight and stationary kit that child has given me over the years. But this gift is so... grown up.
I hugged her tightly, and then she helped me decide where to hang it. It's now hanging in my kitchen window where it will capture the late afternoon sunshine, sending a cascade of rainbows across the counter tops.
Sunday, February 1, 2009
Stealing from the Blind
Ashlee's Mom, at the blog Pipecleaner Dreams, posted a link to this article by ABC News about how people react when they see a clerk at a store rip off blind customers. Overall very interesting, especially the fact that people react differently when it is a woman who is blind being stolen from rather than a man who is blind.
What Would You Do? Customers Speak Up When Clerk Shortchanges Blind Person.
There's also a video.
Thanks Ashlee's Mom for letting us know about this article.
What Would You Do? Customers Speak Up When Clerk Shortchanges Blind Person.
There's also a video.
Thanks Ashlee's Mom for letting us know about this article.
Thursday, January 29, 2009
The Low Vision Clinic in Berkeley
Last friday, Rick and I took Queen Teen to the Low Vision Clinic at UC Berkeley for an assessment. It had been five years since her last evaluation and we wanted to see if there'd been any changes. Plus, Queen Teen is eager to read and has been picking out sight words like "the," "and," and "there." She can identify items from a list by looking for the first letter of that word (M for "milk") and keeps asking "What is that word?" If there's any chance she can learn to read, then I will do everything I can to help her.
Laura Fogg, her Orientation and Mobility instructor, met us at the clinic. I invited her because Queen Teen has been less than cooperative at appointments. Even something as simple as a quick doctor's visit for itchy skin can become a tearful battle. Between adolescence and the hundreds of doctor's appointments Queen Teen has had to go through since birth, I can understand her lack of enthusiasm about ANOTHER appointment. Laura seems able to draw Queen Teen from her shell, plus she works with her at school so would have more info than I about how Queen Teen uses her vision.
As expected, Queen Teen was NOT happy to be there. She went along with the visit for a while, but as soon as it got too hard, or went too fast, she shut down and refused to lift her head. Then when the doctor tried to put glasses on Queen Teen to test lenses, Queen Teen kept shoving them off her face, once knocking the lens completely out of the frame. The doctor went too fast for Queen Teen to keep up, quickly switching from one task to the other before Queen Teen fully understood what she was supposed to do. I understood why the doctor was in such a hurry, but I wish she had taken more time to show Queen Teen what each test was and how it worked. Queen Teen is a curious person and likes to examine and question objects before they're shoved in front of her face.
There were times when Queen Teen got into the games, laughing when she stuck her finger into the hole on the contrast cards and playfully snatching the light wand during the visual fields test. She played with Laura and answered questions clearly, saying "I can't see that." I was proud of how she spoke up for herself, telling us when she could or could not see something and asking questions about what was happening. This is not a passive Multiply-Disabled child; this is a girl who is capable of understanding what is happening to her and expects us to explain WHY we're doing it.
Happily I can report Queen Teen's vision hasn't changed much in the last five years. Unlike her hearing and ataxia, her vision is stable. The doctor changed her prescription just a little to accommodate nearsightedness and astigmatism, which are actually normal changes most children experience as they grow. She's seen an opthomologist every year to check her eye health and her doctor has said it didn't appear that Queen Teen's vision had changed (her doctor is a certified Low Vision expert, so I know this woman knows what she's doing). Now we have verification from two Low Vision experts that Queen Teen's eye condition is stable and we don't expect it to worsen any time. Thank goodness!
We also talked about ways to help Queen Teen read and discussed the use of a CCTV. I'll look into getting her one for home use. Because of how bad the budget is in California, I expect a battle finding someone to pay for a CCTV, but if that's what Queen Teen needs to successfully learn to read, then I'll find a way to get her one, even if I have to hold a bake sale!
Laura Fogg, her Orientation and Mobility instructor, met us at the clinic. I invited her because Queen Teen has been less than cooperative at appointments. Even something as simple as a quick doctor's visit for itchy skin can become a tearful battle. Between adolescence and the hundreds of doctor's appointments Queen Teen has had to go through since birth, I can understand her lack of enthusiasm about ANOTHER appointment. Laura seems able to draw Queen Teen from her shell, plus she works with her at school so would have more info than I about how Queen Teen uses her vision.
As expected, Queen Teen was NOT happy to be there. She went along with the visit for a while, but as soon as it got too hard, or went too fast, she shut down and refused to lift her head. Then when the doctor tried to put glasses on Queen Teen to test lenses, Queen Teen kept shoving them off her face, once knocking the lens completely out of the frame. The doctor went too fast for Queen Teen to keep up, quickly switching from one task to the other before Queen Teen fully understood what she was supposed to do. I understood why the doctor was in such a hurry, but I wish she had taken more time to show Queen Teen what each test was and how it worked. Queen Teen is a curious person and likes to examine and question objects before they're shoved in front of her face.
There were times when Queen Teen got into the games, laughing when she stuck her finger into the hole on the contrast cards and playfully snatching the light wand during the visual fields test. She played with Laura and answered questions clearly, saying "I can't see that." I was proud of how she spoke up for herself, telling us when she could or could not see something and asking questions about what was happening. This is not a passive Multiply-Disabled child; this is a girl who is capable of understanding what is happening to her and expects us to explain WHY we're doing it.
Happily I can report Queen Teen's vision hasn't changed much in the last five years. Unlike her hearing and ataxia, her vision is stable. The doctor changed her prescription just a little to accommodate nearsightedness and astigmatism, which are actually normal changes most children experience as they grow. She's seen an opthomologist every year to check her eye health and her doctor has said it didn't appear that Queen Teen's vision had changed (her doctor is a certified Low Vision expert, so I know this woman knows what she's doing). Now we have verification from two Low Vision experts that Queen Teen's eye condition is stable and we don't expect it to worsen any time. Thank goodness!
We also talked about ways to help Queen Teen read and discussed the use of a CCTV. I'll look into getting her one for home use. Because of how bad the budget is in California, I expect a battle finding someone to pay for a CCTV, but if that's what Queen Teen needs to successfully learn to read, then I'll find a way to get her one, even if I have to hold a bake sale!
Sunday, January 25, 2009
Snot
When Queen Teen catches a cold, it can be a very big problem. Motor control difficulties and sneezing do not mix. She tries very hard to grab a tissue, but she simply can't get it out of the box and up to her nose before she sneezes. So she gets a lot of snot everywhere; all over her shirt, in her hair, on her face... everywhere.
There are boxes of tissues in every room. I keep fist-fulls in both pockets. Queen Teen keeps a box on her walker and another on the floor beside her while she plays. Her hair is pulled back tightly with extra hair-ties and clips. She wears an extra shirt over her t-shirt so it's easy to change when necessary. We're as ready anyone can be.
ACHOO! Uh oh... I spring into action, grabbing a tissue from my pocket as I run to her room, intercepting a thick string of snot hanging from her nose down to her chest. I grab it with the tissue and quickly pull it from her nose, wrapping it in the second tissue I grabbed from the box beside her, trying to wipe if away before she twists her head from my grasp and drags the snot-string across her face.
"Yuck!" she says, reaching up with her own tissue to wipe herself.
Whew, just in time. I dispose of the now wet and lumpy tissue, restock my pockets with fresh tissues, and wait for the next sneeze. They come quickly. Every fifteen minutes I race to try and grab the snot before she does. Occasionally she manages to get it first, and it's about a fifty-fifty shot that she'll clean herself up rather than smear the snot around. I know it's important she try to care for herself, but I wish she'd just let me do it. I'm getting tired of changing her shirt.
Sometimes the sneezes are tricky. She'll be walking into the kitchen with her walker and then suddenly stop, her eyes slightly crossing and her mouth open wide. She'll grab a tissue and hold it to her face. I will stand close by, a tissue in each hand, waiting. Will she sneeze, or not? Her mouth will open and close as if she's chewing on a giant piece of taffy and then she'll clamp her lips shut.
"Drat!" she'll say. "I hate it when that happens!"
Me too, baby.
And then, a few moments later, after we've both let down our guard... ACHOO!
This latest snot battle has gone for a week. Luckily she improved in time to go to her appointment at the Low Vision Clinic in Berkeley (more on that next time), and then she visited her dad for the weekend. I had one full day yesturday to rest from chasing snot and actually managed to drink an ENTIRE cup of coffee BEFORE it got cold. What a pleasure.
Last night, her dad called. "Queen Teen has a really runny nose and a temperature. What should I give her?"
I sighed. Looks like when she comes home this afternoon we'll be back to fighting snot. Oh well... I've had a day to rest, reload the tissue boxes, and drink so much tea I've flushed out any virus that might think of attacking me. I'm ready.
There are boxes of tissues in every room. I keep fist-fulls in both pockets. Queen Teen keeps a box on her walker and another on the floor beside her while she plays. Her hair is pulled back tightly with extra hair-ties and clips. She wears an extra shirt over her t-shirt so it's easy to change when necessary. We're as ready anyone can be.
ACHOO! Uh oh... I spring into action, grabbing a tissue from my pocket as I run to her room, intercepting a thick string of snot hanging from her nose down to her chest. I grab it with the tissue and quickly pull it from her nose, wrapping it in the second tissue I grabbed from the box beside her, trying to wipe if away before she twists her head from my grasp and drags the snot-string across her face.
"Yuck!" she says, reaching up with her own tissue to wipe herself.
Whew, just in time. I dispose of the now wet and lumpy tissue, restock my pockets with fresh tissues, and wait for the next sneeze. They come quickly. Every fifteen minutes I race to try and grab the snot before she does. Occasionally she manages to get it first, and it's about a fifty-fifty shot that she'll clean herself up rather than smear the snot around. I know it's important she try to care for herself, but I wish she'd just let me do it. I'm getting tired of changing her shirt.
Sometimes the sneezes are tricky. She'll be walking into the kitchen with her walker and then suddenly stop, her eyes slightly crossing and her mouth open wide. She'll grab a tissue and hold it to her face. I will stand close by, a tissue in each hand, waiting. Will she sneeze, or not? Her mouth will open and close as if she's chewing on a giant piece of taffy and then she'll clamp her lips shut.
"Drat!" she'll say. "I hate it when that happens!"
Me too, baby.
And then, a few moments later, after we've both let down our guard... ACHOO!
This latest snot battle has gone for a week. Luckily she improved in time to go to her appointment at the Low Vision Clinic in Berkeley (more on that next time), and then she visited her dad for the weekend. I had one full day yesturday to rest from chasing snot and actually managed to drink an ENTIRE cup of coffee BEFORE it got cold. What a pleasure.
Last night, her dad called. "Queen Teen has a really runny nose and a temperature. What should I give her?"
I sighed. Looks like when she comes home this afternoon we'll be back to fighting snot. Oh well... I've had a day to rest, reload the tissue boxes, and drink so much tea I've flushed out any virus that might think of attacking me. I'm ready.
Tuesday, January 20, 2009
Sasha and Malia
This morning I watched President Obama's swearing in ceremony live via Hulu with a very sick Queen Teen on my lap. I cheered and wiped her nose in between pointing out various people and images on the computer screen. I explained that what we were seeing on the screen was happening at that very moment in a place called Washington DC, as far away from us as New York City.
"Wow, that's a long way away," she said.
"Yep. It's pretty amazing we can watch what's happening right now on the other side of the country."
Although I reminded her how important this occasion was, that not only was a new president about to be sworn in, but the first BLACK president was being sworn in, she was a little bit bored with the whole thing. A blurry view of crowds, more blurry, mostly white faces in the official bleachers, banter from the commentators... and then Sasha and Malia arrived!
"Look! Those are President Obama's children. Shasha is about the same age you are."
Queen Teen sat up straighter and peered at the screen as the First Daughters arrived and took their seats in the front row. "Wow."
"Yeah. Isn't it neat. They're going to live in the White House with their parents. Can you imagine what it would be like to have your dad be president?"
She nodded and stared at the girls. "That's cool."
Then it was more boredom as more people she didn't know arrived, until Michelle Obama entered. I pointed at the screen. "That's their mom, Michelle."
"Pretty. I like her dress." Mrs. Obama wore bright yellow, a color my daughter has no trouble seeing. "Where are the girls?"
As past presidents and vice presidents and George Bush arrived, Queen Teen wiped her nose repeatedly and drank her juice. Then at last Barack Obama entered. I bounced in my seat excitedly and cheered.
"There he is! That's our new president!"
She squinted at the screen and smiled. "Cool."
"Remember we've never had a black president before. When I was a baby, a black child couldn't play with white children in some parts of the country."
She scowled. "That's silly."
"I know! And now we have a black president! And not only that, he's smart and knows how to be a president. I think he's going to be great."
Queen Teen nodded and smiled. Then she peered at the computer screen again. "Where are the girls."
She didn't stick around for the ceremony. When it was obvious the girls wouldn't be shown again, she hopped off my lap with her tissue box and went back to her room to play. Presidents are boring when you're thirteen. But Sasha and Malia, THEY are rock stars.
Wednesday, January 14, 2009
Hearing Aid Battle, Round 2
Over the holiday break, Queen Teen's teacher sent home the hearing aids again, and since QT was spending the entire break at home with me, there was no ready excuse to avoid the fight. So, one day I decided to face the battle full charge ahead.
"Hey sweet, you need to wear your hearing aids for a bit."
"Why?" QT said with a scowl.
"Because your teacher wants you to keep practicing."
"Why?" She crossed her arms.
"Because the more you wear them the sooner you get used to them. They won't bug you so much."
"Why?" Now her head was buried in her chest.
"Your hearing aids help you hear better."
She looked up at me with narrowed eyes. "No they don't."
"Yeah, they really do. I can tell the difference when you don't wear them. I don't have to yell so much."
"They bug me."
I was trying very hard to keep my voice calm, yet firm. But my frustration was growing.
"Just wear them for a couple of hours and then you can take a break."
"I don't want to."
"I want you to, though. And so do your teachers."
She started to cry. "They bug me!"
"What do you mean they bug you, honey?"
"They bother my ears."
"How so?"
"I don't know."
I looked at her ears, examining the inside curves for any sign of rubbing or irritation. "I don't see anything. Can you show me where it bugs you?"
She shrugged.
"Wear them for a little while and then you can take them out if they bug you too much."
She cried harder while I gently put the hearing aids in her ears. As soon as I was done, she shouted, "I don't like them!"
I hugged her and said, "I know. I'm sorry. I'm proud of you for trying." And then I left the room to let her collect herself.
A few minutes later I checked on her. She'd stopped crying, but her hearing aids were practically hanging out of her ears only attached by the ear molds.
"Honey, you have to keep them on."
"They bug me!"
I pushed the mechanical part behind her ears again. "Just for a little while."
I thought distraction might help. "Want to color?"
"No." She turned her back on me.
"Watch a movie?"
She shook her head.
I sighed and left the room again, only to discover a few minutes later that she'd pulled her hearing aids out from behind her ears to dangle like cream colored antenna.
This went on for almost an hour, and then I took them out. I tried again the next day, and the next, but it was always the same.
It is so hard to find the balance in this fight. She needs hearing aids, but she HATES them. I understand she's used to not hearing, so everything sounds weird when she wears the aids. I also know they really could be bothering her. Maybe they itch, or rub. Just because I can't see anything doesn't mean the irritation isn't there. But then when I add in the teen-age, fight mom at all cost, stubborn part of the equation it throws all the excuses out the door. So what is the answer then? Is she just being stubborn, or really having trouble, or all of the above?
She'll wear them at school, so I guess that will have to do for now. Except that her teacher sends them home on the weekends.
Get ready for Round 3.
"Hey sweet, you need to wear your hearing aids for a bit."
"Why?" QT said with a scowl.
"Because your teacher wants you to keep practicing."
"Why?" She crossed her arms.
"Because the more you wear them the sooner you get used to them. They won't bug you so much."
"Why?" Now her head was buried in her chest.
"Your hearing aids help you hear better."
She looked up at me with narrowed eyes. "No they don't."
"Yeah, they really do. I can tell the difference when you don't wear them. I don't have to yell so much."
"They bug me."
I was trying very hard to keep my voice calm, yet firm. But my frustration was growing.
"Just wear them for a couple of hours and then you can take a break."
"I don't want to."
"I want you to, though. And so do your teachers."
She started to cry. "They bug me!"
"What do you mean they bug you, honey?"
"They bother my ears."
"How so?"
"I don't know."
I looked at her ears, examining the inside curves for any sign of rubbing or irritation. "I don't see anything. Can you show me where it bugs you?"
She shrugged.
"Wear them for a little while and then you can take them out if they bug you too much."
She cried harder while I gently put the hearing aids in her ears. As soon as I was done, she shouted, "I don't like them!"
I hugged her and said, "I know. I'm sorry. I'm proud of you for trying." And then I left the room to let her collect herself.
A few minutes later I checked on her. She'd stopped crying, but her hearing aids were practically hanging out of her ears only attached by the ear molds.
"Honey, you have to keep them on."
"They bug me!"
I pushed the mechanical part behind her ears again. "Just for a little while."
I thought distraction might help. "Want to color?"
"No." She turned her back on me.
"Watch a movie?"
She shook her head.
I sighed and left the room again, only to discover a few minutes later that she'd pulled her hearing aids out from behind her ears to dangle like cream colored antenna.
This went on for almost an hour, and then I took them out. I tried again the next day, and the next, but it was always the same.
It is so hard to find the balance in this fight. She needs hearing aids, but she HATES them. I understand she's used to not hearing, so everything sounds weird when she wears the aids. I also know they really could be bothering her. Maybe they itch, or rub. Just because I can't see anything doesn't mean the irritation isn't there. But then when I add in the teen-age, fight mom at all cost, stubborn part of the equation it throws all the excuses out the door. So what is the answer then? Is she just being stubborn, or really having trouble, or all of the above?
She'll wear them at school, so I guess that will have to do for now. Except that her teacher sends them home on the weekends.
Get ready for Round 3.
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