Queen Teen Goes to Disneyland

What an enchanting adventure that was! Queen Teen's first trip to Disneyland! It turned out far better than I had imagined. I expected her to be fearful and need to take frequent breaks, but instead Queen Teen pushed herself onward, eager to stay and explore.

We had help from my dear friend Tama and her daughter, Boo-Bug. There is no way I could have managed this trip without her. She's a real Disney fan (even has an annual pass), so she knew where to go in the park and how to get the best deals. She drove us all the way to LA, arranged the lodging, got the passes to the park and to Ariel's Grotto, and held on to Queen Teen when I needed a bathroom break. Tama, you are my hero!

On the first day, Queen Teen wore her baby-blue princess dress and got her hair done up like Cinderella at the Bibbity Bobbity Boutique. We explored Fairy Tale Land and then at 11:30 went to Ariel's Grotto for lunch. I knew Queen Teen was nervous because she gripped the brakes of her wheelchair and hardly looked up from her lap. But when I asked her if she was alright she loudly said, "Yes." She was determined to be in Disneyland, so she kept her agoraphobia in check and insisted she was fine.

In Ariel's Grotto we met Ariel, Snow White, Aurora, and Belle. Then Queen Teen met her hero, Cinderella. She was so excited she couldn't stand up. I helped her up and Cinderella wrapped her arm around Queen Teen's waist to support her. Cinderella knew immediately how to interact with Queen Teen, speaking clearly and leaning in closer for Queen Teen to see her face. Queen Teen just kept grinning.

We were at Disneyland two and a half days, staying at the California Grand Hotel because it was closest to the park and easiest for Queen Teen if she needed a break. Happily, we didn't need to worry. Queen Teen took a deep breath and plunged in, excited to be there, happy to explore, and genuinely having a great time. She even went on a few rides.

I was surprised she wanted to go on a ride. I was waiting for the panic attacks, the shouts of fear as she begged to get off. But she wanted to do go on a ride at Disneyland, so she allowed the staff to help her and then sat beside me, gripping my arm like a vice. She rarely looked up at the scenery, instead staring down at her lap, concentrating on the sensation of movement and the need to keep her fear at bay. We chose mellow, relaxing rides, the ones without any drops, spins, or fast movement. First she rode It's a Small World, sitting up high in her wheelchair on the boat, looking like a homecoming queen as she stared at the animatronic puppets, unsure of what they were. She also rode through Story Book Land but wouldn't look up at the miniatures so I had to describe them as we went by. On Jungle Adventure, she laughed when the robot elephant splashed the boat and a few drops landed on her head. The Train seemed boring to her, but driving a car in Autopia was much more challenging. When she drove, she steered wildly but wouldn't look up to see where she was going. "Driving hurts my hands," she declared when it was over.

Mostly we wandered the park, stopping to examine the flowers and statues. And we met characters; now she knows who Micky Mouse and Minnie Mouse are, as well as Alladin, Chip and Dale, and Brother Bear.

I pushed her wherever she wanted to go and got tearful several times. I was so happy to be there with her, so thrilled that we were able to make another dream come true. There is nothing more wonderful in the world than my daughter smiling.

I was so impressed with the staff of the park and how well they worked with Queen Teen. They knew exactly how to help her feel comfortable, from speaking loudly to assisting her on the rides. The terrain of the park is primarily level and easy to navigate in a wheelchair, despite the crowds, and most of the rides are accessible. Disneyland is perfect for people with disabilities, more so than any other amusement park I've ever seen. For a teen-girl dressed like a princess in a wheelchair, it was heaven.

On the last morning we took one more stroll around the park before leaving. After lunch I said, "It's time to go now."

She smiled and said, "That's okay." Then she looked thoughtful. "Mom."

"Yes."

"Can we come back next year?"

"We'll see what we can do."

Darling girl, if there is anyway I can make it happen, I will bring you back to Disneyland next year.

Disneyland

Image from Coloring Page for Kids.com

Tomorrow, Queen Teen and I go to Disneyland. We're meeting my dear friend Tama and her youngest daughter Boo Bug and then driving together to LA where we will explore all that is Disneyland. Cinderella is a top priority.

This is Queen Teen's first trip to the "happiest place on Earth." I haven't been since high school, and most of my memories are about making out with my then boyfriend. We're not a very Disney family. I have friends who are total Disney devotees, but I've always been a bit blase about Mickey Mouse and his friends. Disney. Whatever. I like Pixar better.

Queen Teen hasn't shown much interest either, except for Cinderella, and her aversion to amusement parks and loud crowds didn't inspire me to attempt a very expensive trip to a place she'd hate. But last summer she began asking me about Disneyland. What is it? Where is it? Do they really have Cinderella there?

My daughter loves Cinderella the way some girls her age worship Hannah Montana.

At the beginning of this year, I decided to take the plunge. I set aside some of my student loan and started making plans. When I told Queen Teen we were going she almost fell over. She laughed and clapped her hands and shouted "Disneyland!"

Happily, my friend agreed to come with me. There was no way I could take Queen Teen to Disneyland by myself and Rick REALLY didn't want to go. He would if he had to, but he didn't relish an all things Princess day at Disneyland. Somehow I can't really see him there. Instead it will be us four girls embracing our inner Princesses on a quest to meet Cinderella.

I am so excited!

Does Everyone Go to The Doctor?

Yesterday, Queen Teen and I walked with Rick to his appointment at the eye doctor, enjoying the beautiful California spring time weather. We took our time and stopped at flower gardens where we smelled roses and touched their wide, soft petals. At the doctor's, Rick went inside and Queen Teen and I walked another block to the cafe to wait for him. We got Italian Sodas and chatted about how excited she is to be going to Disneyland (she's never been).

Then she asked, "Where did Rick go?"

"He's at the eye doctor's getting his eyes checked."

"Why?"

"Because the doctor is making sure his eyes are healthy and if he needs new glasses."

She thought about this for a moment, then asked, "But why does the doctor have to check his eyes?"

"Everyone goes to the eye doctor for an eye checkup. It's important to keep our eyes healthy." I looked at her carefully as she stared at me. "Did you know that everyone goes to the eye doctor?"

She shook her head. "No."

"Yes. Everyone goes. Even me. And everyone goes to the dentist for a check-up and a cleaning, AND we all go to the doctor for a check-up. Everyone even gets shots sometimes. And sometimes we have to get our blood drawn for tests. You're not the only person who has to go to the doctor, sweety."

"I'm not?" She seemed surprised.

"No! Not at all. Everybody has to go to the doctor sometimes, not just you."

She grinned. "Oh." Then she drank her soda, looking very pleased with the idea that EVERYONE has to be examined by a doctor now and then.

This was another one of those moments that showed me how much of the world Queen Teen misses. She honestly believed she was the only person in the entire world who has to go to the doctor, except for the few kids she sees at clinics. The ONLY person who has ever had to have her blood drawn, or her brain and eyes and ears examined.

And why shouldn't she think that? She doesn't really know any other people with disabilities and doesn't know anyone who goes to the doctor as often as she does.

How did she miss this fact of life? How did I not show her going to the doctor is normal for everyone. It's just one of those facts we don't think about, because it just IS.

For Queen Teen, nothing is as simple as just IS.

The Original Five Things I Love About Being a Mom

I found the originator of the Motherhood Meme.

Check out Her Bad Mother for the post that explains it all, as well as to read a new, funny mama blog.

This was my first meme, and I really loved the idea that all us Mama's are connected through our devotion to our children and our love of blogging.

I had a lovely Mother's Day. Slept in, got my traditional, once a year breakfast in bed, went for a long walk with my hubby, daughter and dog, then went to a play that afternoon (saw Agatha Christie's Mouse Trap at the Ukiah Player's Theatre. Great acting and the set was amazing, especially when you consider this is a small, local theatre with a microscopic budget).

I hope all you Mama's had a lovely weekend too, regardless of whether or not you live where there is an "official" Mother's Day. Every day is a day to acknowledge the work and devotion of motherhood everywhere!

Grad School and Mommy Guilt

It amazes me how much I can do. I'm a mother in graduate school who owns a small business. Those three things compete for my time and energy. Right now school has to take top billing because it's the end of the semester and I have finals and papers due. For this, I feel guilty. My daughter should be the top priority, and of course she is, but my time is spent writing research papers and studying for tests, not taking her for walks or playing games.

I hate that, and it makes me wonder if I've made the right choice going back to school.In the long run, it will be very, very good for my family. But right now, I am putting two years of my life, of her life, into classwork. I am focusing on the outcome and my future earnings potential. What about today?

It will be worse this summer when I go to summer school. I am taking two classes in a short, five week, semester, which I know is insanity, but if I have to go down to the bay area for several days, I might as well take two classes and get it over with. I'll be gone all week, only home on the weekends, and even then I'll more than likely need to lock myself in my room to read textbooks.

And now to make it more interesting, I'v lost my childcare. We had an amazing respite worker, a young woman full of energy and creativity that Queen Teen bonded with and started to call "friend." She moved, so now we're without child care and Queen Teen lost her friend. She's sad and I'm stressed. Will I find anyone before summer semester starts? And how will Rick and Queen Teen get along when I'm gone all week?

My business is the lowest priority, which is unfortunate, especially since I launched a book and now have zero time to market it. I throw receipts into a folder, respond to emails and phone calls half-heartedly, and haven't updated my inventory since January. Pretty ironic when I just wrote a book about how important it is to manage your publishing company like a business. Yeah, yeah... I'll do that later.

My own writing? Forget it. If I'm not reading a text book I'm spending time with my girl. Something had to go and it couldn't be sleep.

Queen Teen just rolls with it. On Tuesdays I put her on the bus and wave goodbye because I won't see her until the next day. At first she was sad, now she just waves back and tells me "see you tomorrow." When she gets off the bus Wednesday afternoon she smiles so big her whole body shakes. It only takes a day for me to miss her. I dread this summer.

Why do mothers beat themselves up for being away from their children?

Here I am, "wasting time" blogging. I'd better get off the net and finish my paper. Sorry I've been so out of touch, everyone. I'll read your posts asap. I really do love reading what you write.

Five Things I Love About Being A Mother

Tagged by Terri.

1) I love watching my daughter grow and become her own person. She is utterly fascinating, and often surprising. We are different in many ways, and so alike in others.

2) I love how I can soothe her fears with a simple hug; how I am the person she comes to first for help and advice; how her face lights up when she sees me waiting for her at the bus stop and she yells, "Hi Mom." (and yes, I know how blessed I am that my teenager daughter is still happy to see me.)

3) I love how my daughter has changed the way I look at the world; how she has helped me learn to literally stop and smell the flowers, enjoy the sunshine, listen to the birds, hunt for butterflies, and look at rocks. I play more and explore more, all thanks to Queen Teen.

4) I love how motherhood has taught me to be more organized and manage my time better. Before I was a mother, I spent HOURS writing terrible poetry while sipping cappuccinos in a cafe, pondering my life, and wandering aimlessly, feeling lost. Now I have a set amount of time to write or blog or manage my book press and those deadlines make me far more productive and creative. My life has a direction and a center, which was something I needed.

5) I love how motherhood has made me stronger and shown me that I am capable of far more than I ever gave myself credit for. I feel confident and smart, something I never felt before I became a mom. Through trial and error, I've learned that I'm a good mom, and I hope I am teaching my child that she is smart and capable as well, even more so than me.

Tag! Tama and TJ, I'm passing this on to you.

Protests Rock California State Capitol

This morning, I received this update from the CDCAN mailing list. It made me very, very happy.

I couldn't go to Sacramento to protest, but I want to send my thanks to all for fighting so hard for my child and others with disabilities.



Protests Rock State Capitol

OVER 2,000 MARCH AGAINST DISABLED CUTS HUNDREDS JAM HEARING ROOMS & HALLWAYS

Protestors Demonstrate on Capitol Sidewalk – Focus Against Cuts to Regional Centers, IHSS, Mental Health, SSI/SSP, Medi-Cal – Lawsuit To Stop IHSS Worker Wage State Funding Cut Announced During Protest

SACRAMENTO, CA (CDCAN) [Updated 04/22/09 10:30 PM (Pacific Time) ] - Over 2,000 marched from the Sacramento Convention Center to the State Capitol protesting against budget cuts to persons with disabilities, mental health needs, seniors, community organizations and workers who provide services Wednesday late morning in a loud demonstration that later filled the Capitol hearing rooms and hallways. Some estimates of the crowd exceeded well over 2,500 at its height around 12 noon, with the entire L street sidewalk and parts of the State Capitol grounds filled with people protesting and chanting “No More Cuts” for two solid city blocks. [CDCAN Note: all photos by Stephen Dale]

The protest march and sidewalk demonstration in front of the State Capitol drew a crowd larger than expected was linked to an Assembly Budget Subcommittee hearing on regional center and mental health budget cuts that was held at 1:30 PM. The protest was also linked to a Senate Budget Subcommittee #3 on Health and Human Services hearing on Medi-Cal budget cuts scheduled for Thursday morning (April 23) at 09:30 AM in the State Capitol in Room 4203 (the hearing could be delayed if the Senate floor session does not end by 09:30 AM).

The crowds that packed Wednesday’s Assembly budget subcommittee hearing rooms and hallways were easily the largest to date at the Capitol in the past year.

Persons marching and demonstrating came from all parts of California, and covered the range of persons with disabilities, mental health needs, seniors, families, IHSS and other support workers, community organizations including providers, regional centers, independent living centers and others.

The march began from the west entrance of the Sacramento Convention Center four blocks away from the State Capitol and ended with a sidewalk demonstration in front of the Capitol grounds. Earlier hundreds of the marchers had lined both sides of J Street near 13th Street holding signs protesting cuts to the disabled, blind, mental health and seniors and chanting “No More Cuts!”

Hundreds of regional center funded community-based providers and organizations, their workers, persons with developmental disabilities and their families and workers were on hand, many fearful of the impact of cuts already passed – and what many believe will be new massive cuts coming in late May or June.

Protestors demanded that cuts to In-Home Supportive Services, Medi-Cal optional benefits, SSI/SSP grants, CalWORKS grants, regional center services and other programs be rescinded and funding restored, chanting “find another way”.

The protest march and demonstration was organized by CDCAN working with other organizations and groups.

Capitol Security Concerned About Sheer Numbers of Protestors

Sacramento City Police and the California Highway Patrol were on both sides of the sidewalk to keep protestors off the street and off the Capitol grounds. The California Highway Patrol officers – including those mounted on horses, expressed concern about the sheer numbers of persons jammed on the sidewalk chanting.

One California Highway Patrol officer guarding the Capitol grounds warned that people could be subject to arrest if they entered the Capitol grounds holding any signs or chanting any slogan – a warning that was immediately retracted by his superior officer and other officers who came down to the sidewalk area.

Later around 12:30 PM, hundreds of persons protesting on the sidewalk began entering without incident, the Capitol grounds to enter the State Capitol building to attend the 1:30 PM hearing.

Lawsuit To Block State Funding Cut For IHSS Worker Wages Announced During Protest – Details Will Come Soon

During the protest on the sidewalk in front of the State Capitol. Lynn Carmen of the Medicaid Defense Fund, told the crowd that a federal lawsuit would be filed soon to block the budget cut passed in February and scheduled to take effect July 1, 2009 that would reduce the state’s portion of funding for In-Home Supportive Services worker wages to a maximum of $9.50 per hour (that cost is shared by the state, federal government and the counties).

The news by Carman was greeted by loud cheers from the huge crowd, who promised further details soon regarding the lawsuit. See CDCAN website soon for details on the lawsuit at www.cdcan.us

Knee Braces and Wheelchairs: the CCS appointment, round 2

Starting your Spring break with a CCS clinic appointment isn't a great way to begin, and Queen Teen was not pleased. I had called CCS to ask about having her wheelchair adjusted because her knees are five inches past the seat. The facilitator said they had an opening at the next clinic and we should come. On Monday afternoon, the first day of vacation, we arrived at clinic, complete with hearing aids, knee brace, walker and wheelchair. Rick came too, ready to be my "bull-dog" if need be. I dreaded the appointment because I knew the doctor would push for the full leg to knee braces again, something we'd already decided against, and something I was tired of discussing.

The doctor watched her walk in and got that look on his face, the one that shouts disappointment and worry. Just once I'd like him to see HER and comment on her incredible strength and ability to walk at all, rather than focusing on the way her knees bend. I tried to feel patience by reminding myself that this doctor had driven three hours to see 20 kids in one day.

He examined her legs, twisting and turning them, and shook his head. Then he measured the hyper extended, backwards, bend of her left knee and shook his head even more. "Once it gets beyond 20 degrees she'll be in trouble."

I took a deep breath. "I know her knees are a problem, especially her left, and we are very concerned, believe me. But if we put full leg braces on a 14 year old girl who is already struggling with depression and poor self-image, it will crush her. I have to think about the whole child, not just her knees."

The doctor nodded. "It's a tough choice."

Rick explained how hard Queen Teen works. She remembers to do her exercises and feels proud of her ability to walk. Then he seconded how important it is to keep that spirit alive.

The doctor nodded some more.

Then the knee brace discussion began, but this time it felt like the doctor and therapists were listening to us, trying to come up with ideas to support Queen Teen's left knee without overwhelming her with braces. The bracing expert discussed the pros and cons of having the knee brace held up by an AFO. After several minutes of debate, I said, "Let's try it."

"I need to know you're going to do more than just try it, because it's a very expensive brace," the doctor said.

"We will do everything in our power to get her to wear it," I replied.

So the doctor agreed to order the brace. Queen Teen needs something to support that knee, and hopefully this knee brace will be tolerable; it feels like the right alternative to full, hip to toe, leg braces. We eventually won the war over the hearing aids, so perhaps we'll win the war of the knee brace too.

Queen Teen is getting a new wheelchair as well. Her current one is way too small and can't be adjusted anymore. She got to pick out the color (red) and seemed excited about getting a new chair.

One other bit of bad news though: I asked the doctor about Queen Teen's hands and how the fingers don't extend anymore. I wanted to know if therapy would help. He said no. She had hyper-extended her fingers and wrists as well and needed bracing to hold the fingers in the correct position.

Sigh... let's just do one bracing battle at a time.

The rest of Queen Teen's holiday was better, but still a bit boring. I'll write more about that next time.

Earning Money for Chores

Queen Teen is a hard worker. She loves to help and will willingly do a chore when I ask her to. Well... most of the time. Especially now that she gets paid for doing those chores.

We've been using a sticker chart to track when she does her chores and when a week fills up with stickers, she gets a dollar. However, my daughter is still struggling with money and how much a quarter is in relation to a dollar. So I came up with the great idea that I would pay her a quarter every time she did a chore and then we would add those quarters up to figure out how many dollars she had earned.

She loved that idea! It really seemed to be motivating to get money immediately a task was completed rather than having to wait until the end of the week for a "paycheck."

Last week, I asked Queen Teen to put her clean clothes away. She happily went to her room and got to work while I sat on the couch and congratulated myself on my brilliance. Yep. I'm a pretty clever Mom.

After a few minutes, Queen Teen yelled something she had never said before. "I'm all done! Someone can pay me now!"

I sat there for a moment with my mouth wide open. What did she just say? Pay me now? Then I started laughing. Oh dear. I've created a monster.

It wasn't what she said as much as how she said it, in that little, demanding voice that seemed to think I should be jumping off the couch to do her bidding. I could see her, 22 years old and at work, yelling at her boss that he should pay her NOW.

She came out of her room and looked at me with her arms folded. "Mom. I said you can pay me now."

"In a minute. I have to check your work."

She frowned and then returned to her room, mumbling that she had done what I asked her to do so why wasn't I paying her.

After I stopped giggling, I checked her work and then paid her the quarter. But later that day, I declared that we were changing the payment rules.

"You will get $2.00 a week as long as you do your chores and help around the house. If you do a good job, you get paid. If you refuse to do your work, you don't get paid."

She grinned. In her mind she just got a $1.00 raise. I didn't tell her she was actually earning less money per week. We'll leave that for another day when I explain about the difference between take home pay and earned pay.

Does Anyone Know the Patron Saint of Hearing Aids?

image from Peran.org


A funny thing happened last week. Queen Teen, who has forever denounced her hearing aids as evil incarnate, started to count the days on her calender until she got her new hearing aids. She pointed at March 31st on her calender and said with a smile on her face, "This is when I get my new hearing aids."

"Um... yeah. That's the day," I replied.

"That's cool," she said.

Cool? Cool? When did wearing hearing aids become cool? It made me want to double check that this was indeed my child and not a changeling left by aliens from the planet Happiness. But no, this is my girl, my own Queen Teen, and somehow she's decided that new hearing aids will be "great!"

March 31st arrived and we drove to Stanford in Palo Alto to see the audiologist, a young Asian woman who has a knack with tricky kids. For over an hour she tested Queen Teen's hearing, with me helping by facilitating games (drop a block in the box when you hear the beep.) One test was followed by another, and then another, all looking for different aspects of Queen Teen's hearing, and an hour later Queen Teen was starting to glaze over. Her eyes drooped and she stopped paying attention to the sounds coming from the headphones. Unfortunately, we weren't done. The doctor and I prompted and encouraged Queen Teen and somehow she found the energy to keep trying for several more minutes.

The tests showed that her hearing was improved from the last time we were there (2 months ago) but was worse than the first time we came (a year ago). It does appear that Queen Teen's hearing is fading, but what it all means is still under debate. Will she lose all of her hearing, or will it reach a plateau? And why is she losing her hearing at all? Just chock it up to another part of the mystery that is Queen Teen.

The doctor put in Queen Teen's hearing aids and adjusted them so that low, soft tones would be louder. She didn't increase any of the other tones because Queen Teen is very sensitive to noise. Immediately I saw a difference. Queen Teen and I chatted about her hearing aids and her hearing and I didn't have to yell. She was alert and responsive and smiling. When we left the office, she kept the hearing aids in and I only took them out when we went to the motel and she complained they were bugging her (3 hours later!).

I decided to get a motel room and spend the night to lessen the stress on both of us (thank you student loans!). It's a 3 1/2 hour trip to Palo Alto from where we live, close enough to drive there and back in one day, but too far to drive there and back comfortably. Instead we ate dinner in our room, watched a movie, slept in late the next day and then had lunch in San Francisco, spending some quality mother/daughter time together. And she kept her hearing aids on the whole time.

So, if anyone can tell me the who the Patron Saint of Hearing Aids is, I'll be very grateful. I need light a candle and say THANK YOU.