Wednesday, April 27, 2011

Tug of War, and I was the rope

On a gorgeous California spring Saturday, Queen Teen and I took our dog, Bourre, for a walk. With Queen Teen in her traveling throne (aka wheelchair) and the dog on her leash, we set out on our usual route toward the Farmer's Market.

Everything was perfect, until another dog stuck his head out from behind a fence and scared the hell out of Bourre.

We walked past a large bush and suddenly there was another dog standing right next to us, looking about as startled as we were. The dog's yard was on a terrace so the dog was practically my height and the fence posts were so wide apart the dog, big and black, could slip right through.

Bourre, a large, brown, 70 pound boxer, stopped in her tracks and jerked back toward that dog, pulling me with her. The wheelchair, over 100 pounds with Queen Teen in it, kept rolling forward, pulling me with it. I still had one hand on the handle, but that was angling the chair toward the edge of the sidewalk and the street. So there I was, pulled with by my left arm backwards and my right arm forwards. I planted my feet and pulled them both back as hard as I could, yelling at Bourre "heal!"

Luckily, Queen Teen slammed on the wheelchair's brakes. Then she turned around and yelled at Bourre too. "Bourre! You bad dog! Stop!"

Thank god she didn't freak out, panic, freeze, and then roll off the sidewalk.

And thank god both dogs didn't freak out either. They just stood there and stared at each other, wagging their tails. (And thank mom I don't tie that leash on the wheelchair).

The whole event lasted about 5 seconds. Very quickly, everything was under control, but I swear I felt like the rope in a tug-of-war. This time, the rope won.

Once everything was under control, we continued with our walk. My back felt a little tight, but nothing hurt. Whew.

Until the next day. That's when my back seized up and I could hardly walk without pain shooting down my leg. I wonder if tug-of-war ropes have that problem?

One week later, my back is better, just a little tight, but at least I'm not limping anymore. It completely messed up my work out schedule, though. I was finally feeling some results and starting to jog again after one month of gym membership, then WHAM... one week and it's all gone.

At least my butt looks fab from pushing a wheelchair 100's of miles over the last 10 years. You want a tight firm ass? Start pushing a heavy wheelchair all over town.

But try to avoid any games of tug-of-war while you're doing it.

Thursday, April 21, 2011

It's the one year anniversary of the Gulf oil spill: How can I help?

image from Salon.com

Yesterday was the one year anniversary of the BP Gulf oil spill, an environmental disaster that is still being felt by the people who live and work along the Gulf coast. To say it was a catastrophe is an understatement.

When the spill happened, I was horrified by the deaths, the incompetence, and the pictures showing the destruction from the oil that continued to pump into the Gulf for months. I felt that I had to do something, but what? I couldn't go to Louisiana to help clean up, and I couldn't stop driving my car or heating my home. Our nation relies on oil; it's in everything, including some of the food we eat (I know. Gross). The Gulf spill seemed like a wake up call, though, something we all needed to listen to and act upon.

But how?

I decided to start with my shampoo. Looking at the things I buy, I realized that I could reduce my reliance on petroleum products, and thus the need for increased drilling, by eliminating the things I buy that use petroleum for no good reason. Why should oil be in shampoo? Or face cream, lotion, make up and sunscreen? What purpose does it serve, other than as a "cheap" filler. Is it really that cheap when oil drilling is so expensive? When our sons and daughters are sent over seas to die for oil companies, just so we can all buy "cheap" shampoo?

We all need to drive our cars, so getting rid of the car isn't realistic. We all use plastic containers, elastic in our clothing, computers, take medications and watch movies on DVD's, all of which use a lot of oil. Petroleum should be saved for those things that need it, like medicine and airplanes.  There is absolutely no logical reason to put oil into beauty products.

For the last year, I've stopped buying beauty products that use petroleum in their ingredients. Yes, I pay a little more money than I used to, but remember, that cost is a tiny percentage of the real cost of oil.  Finding a new shampoo was easy (I now use Giovanni Root 66. Smells great and makes thin hair full and bouncy). There are lots of great shampoos out there that are surprisingly inexpensive. But when I had to switch my face cream, that's when I ran into trouble.

I've used Oil of Olay since I was in high school, some twenty-mumble-mumble years. I love it because it has sunscreen and it doesn't make my skin break out. To say I have extremely sensitive skin is an understatement. Just looking at a rose makes me itchy. And here was the ironic part: I'm not allergic to chemicals. Pour on the petroleum distillates and solvents and my skin stays calm. Add some aloe or primrose oil and I'm itching like a 6 year old with chicken-pocks. Even so called skin soothers like chamomile make me break out. The last thing I wanted to do was put something on my face that would turn it red and flakey.

But I was determined to give up petroleum in my face cream, so I turned to a girl's best friend: her esthetician. I'm lucky because I have a friend who is a fabulous skin care specialist who happens to specialize in sensitive skin (I've been her guinea pig for years. If she can find something that doesn't make me break out, then she's pretty certain it won't irritate other sensitive types). She gave me some suggestions, but a lot of natural skin care products use Vitamin C as a preservative, which makes my skin peel off like a bad sunburn. Eventually, she turned me on to Grateful Body, a skin care line that makes a moisturizer my skin could tolerate, and one that feels great. Occasionally it isn't quite enough moisture for my aging skin, so about three times a week I rub a small amount of Avocado oil on my face at night (food grade, pure Avocado oil. cheap). Works great. I spend more for my face cream now, but I use less at a time, so I think it's actually working out about the same cost per month.

Unfortunately, Grateful Body doesn't put sunscreen in their face cream, so I had to find some type of sun protection. Enter Bare Minerals, a mineral powder makeup that provides spf 15, plus it makes your skin look fabulous. I'm still playing with this makeup, but so far, I really like it. For extra sunscreen I use Mexitan's Tropical Sands SPF 30, which I also lavish on Queen Teen. I first tried this product last year when she and I went to Disneyland and neither of us burned while we were under that extra-hot Southern California sun. And it doesn't make us break out.

By cutting oil from my beauty products, I've also inadvertently cut chemicals, some of which can make us sick (why is it in our children's bubble bath, then?). I know it's not a lot... I mean, how can switching shampoo to a petroleum free one reduce our dependence on oil? It's such a tiny drop in the oil bucket. But it's a start. Imagine if every family in America did that! That would be a lot of drops, adding up to gallons of oil saved every year.

Plus, by making some sacrifices of my own, even in small ways, I am taking responsibility for my part in the Gulf spill disaster. My demand for oil has contributed to the disaster along the Gulf coast and the fisherman who are now out of work. In a small way, this is how I can help. 

Tuesday, April 19, 2011

TED presentation from Julia Query.

Julia Query, a friend of mine, gave a presentation at a TED event in San Francisco about her experience as a mother of a child with a disability. Beautiful and moving, she really shows how it can sometimes feel when you're a parent of a "special" kid, especially in the beginning when everything is so raw and new.



The way she is able to get us to immediately feel what she feels is through the use of the word "retarded." The first time she used it, I admit, I squirmed. Why did she choose that word when it is so loaded with negativity? Don't turn her presentation off simply because she uses the word, though. Try to hear what she's trying to say, and you'll be impressed by the honesty found there. This is truly one of the best talks on parenting a child with disabilities I've ever heard.

Monday, April 18, 2011

Transition

Queen Teen's IEP was last week, and it was a big one. It was her tri-annual IEP, which is always extra complicated, and because she will be 16 in May (!), a transition plan was added into the mix. There were extra people and extra forms and a brand new section of IEP paperwork to fill out. The meeting took over two hours simply because there was so much to discuss and plan for. I thought I was ready. My husband and I had been talking for a month about what we thought Queen Teen will need to live as independently as possible. I had also met with Queen Teen's Regional Center worker and the Regional Center transition coordinator  to discuss  my concerns and questions about her future. I'd done my homework on what should be included in the transition section of an IEP and I even made gluten free chocolate brownies for the meeting. Yep, I thought I was ready.

I was so wrong.  

The meeting itself was fine. Everyone, from her teachers and aids to her therapists, are working incredibly hard for Queen Teen. Their energy and creativity are limitless, which is good, because Queen Teen is a hard kid to work with. Deaf-blindness and a severe mobility impairment make everything a challenge; just finding out what she wants for lunch can take ten minutes. She is smart and funny and eager to learn, which I think is what fires people up so much to help. Nobody wants to slack on this kid when she's trying so hard. 

So the educational part of the IEP was fine. The team works well together and her goals are strong. The reports from the PT and OT looked good and I even agreed to allow the PT to cut back on direct service because it was becoming disruptive to Queen Teen, although that idea took me a few days to think about. 

What got me was the planning for the future. 

I have dreams for Queen Teen: all parents do. We want our children to be happy and productive and maybe find someone to love. I envision Queen Teen living on her own in a house with roommates, supported by a live-in aid and a nurse. She will work at the local hospital in the NICU, rocking newborn babies whose mothers are unable to be at the hospital regularly. Or maybe she'll work in a day care center with toddlers. Queen Teen is crazy about babies, so I know she'll want to work with little kids someday. 

My husband and I also talk about what we'll do when she's grown up and it's just the two of us. What will we do with the house? Will we stay, or move? Will she want to stay in the house? I'm convinced Queen Teen will live outside our home because she is far too independent and stubborn to want to live with me forever. She's going to want to make her own way in the world, with Rick and I still there to support her and help her when she needs it.

But now, it's really starting to happen. Real, concrete plans are being made. Ideas for what types of work she may do are being discussed. Her educational goals are being geared toward what skills she will need to thrive and survive as an adult. She will turn 16 next month and in two years she will be 18 and able to make her own choices about her life. Will she decide to stay in High School, or move on to a Vocational Program? Will she want to move closer to her father in the Bay Area? Will she insist on living with me until she's 30? Will she be able to live on her own?

I had to fight back tears several times during the meeting, not entirely sure why I wanted to cry. Planning for Queen Teen's future is exciting. I want her to have her own life. But why did that idea make me want to grab my daughter who was sitting beside me during the meeting, and hold her tight. I had asked her if she wanted to stay for the meeting and surprisingly she said yes. She got bored pretty quickly, but didn't want Rick to come and pick her up. She chose to stay. She ate brownies, chatted with one of her teachers, and looked at books. Which right there is a huge step for her. She hates it when people talk about her and usually runs as far and as fast as possible from any kind of IEP.  We'd all talked to her ahead of time about what she'd like to do when she grew up ("Be a Princess.") and if she had anything she'd like to tell the team ("Not really.").  During the meeting itself she didn't contribute, but she stayed in her seat and didn't announce ever four minutes how bored she was. We were all very proud of her. This could be the first step toward her being more involved in planning her future.

As I write this, she is sitting on her bedroom floor talking to her imaginary friend "Sara" while looking at Sponge Bob books. Sometimes she is such a child, while at other times she's almost an adult. She pulls me tight, needing my constant reassurance and security, and then pushes me away, yelling at me for some silly thing like her hair slipping out of her hair band and why hadn't I put it in better. She is so beautiful I am stunned sometimes. How can this fragile creature be so strong?

She'll likely still be living with me for at least another five years; she has a long way to go before she'll be ready to be more independent. So we both have time to get used to the reality that she is growing up and will soon be an adult. Funny, we watch our kids growing up every day, celebrating the milestones, but when it comes time to start letting go, it feels as if we're being asked to peel the skin from our own arms. My baby! Don't go. Stay with me and be little and sweet. Bake cookies and draw pictures and go for long walks with me. Giggle over something the dog does, laugh at Sponge Bob with me, dream of princesses. But don't let go of me.

Not until I'm ready to let go of you.






Sunday, April 17, 2011

Does this mean I graduate?

This letter from SFSU regarding the Master's exam arrived yesterday. See the word "Pass"?

I'm guessing that means I get to graduate this year.

If you'll excuse me, I'll be doing the happy dance right now.

Wednesday, April 13, 2011

Why does being away for two days create five days of work?

Shouldn't it be 2 days = 2 days? My friend Julia says it's because I typically do 1.5 days worth of work in 1 day. She may be right.

Where have I been, you ask? At the Anarchist Book Fair in San Francisco. I spent this past weekend selling the books I've published through my press, Medusa's Muse. The event was fabulous. Although I'm not an anarchist (nor do I claim to really understand what anarchy is), I enjoyed spending time with so many passionate, political, idealistic, hard working people of all ages. I sold enough books to cover the cost of the table, and then blew it all buying other people's books. I'll definitely be back next year. Go to my press blog, Medusa's Muse, to read more about the fair and my thoughts on Anarchy.

Saturday morning before the fair opened, my husband and I walked to a cafe on Haight Street for our morning coffee and found this mural:

That's me, offering my decaf-soy-latte to my muse, Medusa, to ask for success at the book fair. The mural is stunning and if you're able, go to Standley near Haight Street, right across from Cafe for the People, to see it.

Beyond the book fair, a lot has been happening around here, which I'll blog about later (hopefully). First, I have to catch up on that five days of work created from one weekend away, and then get ready for another conference, this one called Lit Fest where I'll be teaching a workshop on getting published.

Oh, and I'm still catching up on two seasons of Glee. 

Wednesday, April 6, 2011

My yard is waking up after a long, wet, hibernation



The air is warm and smells like tree blossoms, sticky sweet and buzzing with bees. After a winter with so much rain there was a creek running down my street for three weeks, all this sunshine feels comforting. Even I, who hate hot weather more than just about anything (except tomatoes, and spiders) am soaking up the warmth and driving out the moldy feeling in my bones.

It makes me want to start planting.

But this is what my back yard looks like...

...a massive tangle of knee high weeds, mud, "dog-bombs," and onion grass attempting to take over absolutely every inch of dirt.

Suddenly I am not so eager to go outside and start a garden.

But as I look at this mess called my yard, I see almost undetected signs of Spring.

The Peppermint patch is coming back to life.

The tulips are starting to bloom.

Tiny buds are germinating on the grape vines...

...like this.

The berry patch is valiantly blossoming despite the onslaught of the encroaching onion grass (whoever planted onion grass in the back yard needs a smacking! Every year I have to dig it out, and every year it comes back stronger than ever).


I discovered this gift from the birds blooming. Most of the flowers in my yard are from bird droppings. They must be saying thank you for the bird seed and fresh water we provide all winter.

All the plants in my yard are waking up, stretching their growing muscles and shouting like a New York cabbie hunting for a fare, "Hey! You on the deck! A little attention over here!"

Time to roll up my sleeves, find my gloves, and get to work. 


Tuesday, April 5, 2011

One of my favorite blogs just wrote an excellent post about money

This is too good not to share. One of my favorite bloggers, Mother of Chaos, just wrote a fantastic post about our relationship with money on her blog, Den of Chaos. Click the link, read her post, then come back here and tell me what you think.

What is your relationship with money? Are you the hoarder or the spender, or something in between? I seem to be more of the hoarding type, although I do enjoy a good spending spree at Goodwill from time to time. I've never had money, not in any stable way. My family didn't have money, so I didn't have a college fund or a savings account when I was a kid. We lived day to day, sometimes with enough cash for the four us of to go to the movies, and other times my mom stood in line at the Food Bank to keep us fed. When I grew up, I paid my way through college by working any job I could find, living on bean burritos and apples. And then I became the mom of a child with disabilities, which created it's own unique set of financial challenges. My husband and I work hard, and we managed to buy our own home just before the housing market went crazy in California and all the houses tripled in price (unlike now, where you can buy a place three times less than the owner paid). It's a tiny house in a nice neighborhood, not our dream home, but we make do.

Which is the heart of my relationship with money: I make do. I never believe there will be enough tomorrow, because there never has been. This is irregardless of the fact that my husband's business is growing and we are now able to save a little each month, and irregardless that I will soon be working and helping to support this family. Spending money on something brand new and shiny feels strange to me. I don't see the point of paying full price for a new dress when I can go to the consignment store and pay 50% less. I don't need to buy a new car when my old Mini-Van is perfectly fine (yes, she's got 230,000 miles on her and the air conditioner doesn't work, but she still runs). Even the iPad we bought Queen Teen was second hand; the first generation iPad that dropped in price because people wanted the iPad 2.

Money has always been this elusive, fickle creature in my life, one that appears for a time, then vanishes over night, leaving a path of ruin and anger. Perhaps if it sticks around long enough, I'll be able to trust this thing called "money." Maybe I'll trust it enough in a year or two to buy Mutual Funds or stock and save it for retirement. I'm afraid to lock up my money for the future because we so desperately need it now. Or do we? Are we financially stable? What does that even look like?

I hope to find out.

Sunday, April 3, 2011

Too busy for lounging

When school finished, I imagined that I would spend several weeks puttering around my garden, watching movies in the afternoon, finishing a cup of coffee before it got cold, and writing... lots of writing. But the reality is mighty far from my plans. Instead of basking in a little post-grad school lounging, I am almost as busy as I was in school; the only difference is that there are no tests to study for.

9 months of to-do's are now demanding my full and immediate attention, as in NOW. There is no time to read a book, you must sort the filing cabinet in preparation for taxes and Queen Teen's IEP and medical appointments. And while we're on the subject of appointments, you should make a few for yourself. Those teeth are mighty stained from all that cold coffee you've been chugging, and when was the last time you went to the gynecologist? If you can't remember your last PAP, then it's been too long. Plus, those clothes won't iron themselves and those weeds in the back yard are two feet tall. Oh, and your in-laws are coming.

Which was nice, actually. My in-laws live in Texas and fly out once a year to visit and help with Queen Teen, who was out of school on Spring Break. They stayed a week and during that time helped me clean and organize the pantry. Look, there's food in the pantry behind all that crap. Who knew we had so much Saki and oatmeal? It wasn't all chores: we went for walks in the morning and chatted on my deck with a bottle of wine before dinner, and took a day trip to Healdsburg for lunch. By the time they left, my house was cleaner and my daughter was smiling. I wish we lived closer, but California is too expensive for their liking, and since I refuse to live anywhere Summer lasts 9 months, Texas is out.

This week I'm preparing for the Anarchist Book Fair in San Francisco where Medusa's Muse will have a table. I hope to sell lots of books and network with other indy publishers. I'm amazed my poor publishing company is still alive after three years of neglect, but miraculously, we made a profit in 2010. Of course, I didn't spend very much because I didn't have time to do any promotions, but a profit is a profit. Plus, Uncle Sam will still give me permission to call my publishing company a business and not just a hobby.

To "force" myself to write, I signed up for Script Frenzy. I will attempt to write a 100 page, full length play in April. It started April 1st and I've written 4 pages. Queen Teen goes back to school tomorrow, so I'll be spending the morning working on my play. Far more fun than pulling weeds or ironing shirts.

Hello blog world. I'm back. What did I miss?