Monday, April 27, 2009

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.

Thursday, April 23, 2009

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


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

Monday, April 20, 2009

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.

Friday, April 10, 2009

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.

Thursday, April 2, 2009

Does Anyone Know the Patron Saint of Hearing Aids?

image from

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.