Gravity Check

Queen Teen vs. the new stool

noreply@blogger.com (Terena) — Wed, 25 Jan 2012 15:59:00 +0000

Queen Teen has a stool in her room which came with her vanity table. It's lovely, but it's also too unstable for her. She keeps falling off of it when she tries to pivot to reach her shelves. So two weeks ago, she and I went to Kohls to use a gift card and buy her a new stool. We picked out a round, padded ottoman, the kind you can put things inside.

In the store she liked it. When we got home, she hated it.

For thirty minutes, we discussed the merits of the new stool. How sturdy, comfy, and easy it is to sit on. How she can pivot without falling off. How she can store things inside of it. She agreed to give it a try.

The next day, I heard loud banging from her room. No yelling, just a loud "thump!" "bang." "draaaaaaaaaaaaaaag." "bang!" "thump." "draaaaaaaaaaaaaaaaaaaaaaaaaaaaaag."

Walking into the hallway to see what the hell my daughter was doing, I almost tripped over the new stool, now sitting rejected in the middle of the hall. I peeked inside her room and saw Queen Teen slowly and carefully shoving her old stool back to its spot next to the vanity table. Gripping the wall, she leaned over on wobbly legs and pushed the stool as hard as she could. It moved about two inches. She readjusted her position then pushed the stool again. Over and over, she shoved that stool across her bedroom until at last it reached the vanity table. Then she sat down triumphantly, worn out from the effort, but smiling.

I ducked back into the hall before she saw me, not wanting to interrupt her moment of victory. I glared at the banished stool, then I carried it to my room.

To say my daughter is stubborn is like saying water is wet.

O.K. then, we'll add the new stool to the list of other helpful items you hate, like your glasses, hearing aids, the new way you're being taught to sit and stand (to prevent falls) and the rain boots that would keep your feet dry if you'd wear them.

But I also felt pride watching my daughter push that vanity stool across her room. She was panting with the effort, fighting her ataxia and hypotonia through sheer will power. Remembering the prediction from doctors that this girl wouldn't walk by the time she was 16, I watched her fight that stool all the way across her bedroom. I had to fight my own need to help her; she didn't call me for help. She did it herself and I wasn't about to take that moment from her, despite the fear urging me to grab her when she wobbled each time she had to adjust her hand on the wall.

She drives me absolutely nuts, but you gotta admit, Queen Teen is the toughest chick in town.

Say No To SOPA

noreply@blogger.com (Terena) — Wed, 18 Jan 2012 02:46:00 +0000

Struggling to grow up

noreply@blogger.com (Terena) — Sat, 14 Jan 2012 23:17:00 +0000

The appointment last week went well. Queen Teen was her usual trooper self and the doctor was actually helpful. And then a trip to the Disney Store made everything all better. She was grinning like ... well, like a kid who gets to pick out anything she wants at the Disney Store. And then we got pizza on the way home. As Queen Teen says, "No one can resist pizza." Overall, it wasn't such a bad day.

The doctor was impressed with Queen Teen. She's a 16 year old girl dealing with the typical adolescent challenge of trying to gain independence from her parents, while at the same time coping with the loss of hearing and all the rest of her disabilities. But she is managing to do this with strength, humor, and sheer determination. She is angry, and has every right to be. She's nervous and afraid, but at the same time willing to push the boundaries to gain more independence. Her body won't let her do the things other kids are doing; sometimes her body won't even let her do what she wants to do. Absolutely everything she does is hard work, including sitting in a chair. No wonder she lashes out sometimes. No wonder she cries when she has to go to one more doctor, no matter how nice the doctor might be.

I remember how hard 16 was; life seriously sucked ass. I had my own overwhelming problems that I barely managed to cope with, but none of them can compare to what Queen Teen must cope with every day. The thing she has that I didn't at 16 is a supportive family. She knows that no matter what, Rick and I will always be there for her. She is loved by us and her dad and her extended family. We've all got her back. Even on her worst days, when she's growling with rage and lashing out at everyone around her, we are still there for her. That's a certainty she doesn't have to doubt.

When I think about Queen Teen and her future, I am hopeful. It will never be easy, but she is an astounding human being, capable of far more than anyone expected. She learned to walk when we were told she wouldn't. Now she's learning to read after everyone figured it would be impossible. There is a joy in her that nothing can extinguish. And I will do everything I can to guard that joy. Queen Teen impresses the hell out of everyone she meets. But the next few years are going to be tough. She's struggling to grow up and figure out her place in the world, just like every other teen-ager. Her place is a bit more complicated to find, but she will. She's that's determined.

The Doctor wants to control my entire life!

noreply@blogger.com (Terena) — Thu, 12 Jan 2012 03:04:00 +0000

I'm taking Queen Teen to see a therapist in Mill Valley tomorrow. This person is supposed to help us manage Queen Teen's anxiety issues, especially around doctor's appointments. But right now, this appointment is creating anxiety for her, not helping.

When I told her about the upcoming appointment two days ago, she yelled that she wasn't going. Luckily I told her in the morning right before the school bus came so I didn't have to listen to the yelling all day. When she got home, she seemed to have forgotten about the appointment. But today when I picked her up from school, she was really quiet. When we got home she told me she didn't want to go to the doctor's.

"I'm tired of going to doctor's. Why do they have to be so far away?"

"I'm tired of them too, Honey. I wish they were closer."

"Well I don't want to! I hate doctors!" Then she started crying. It got even better from there.

Her councilor came to the house for his usual appointment and the two of them talked in her room for a while. She told him how angry she is about having to go, how much she hates doctors, how they are boring, how the car ride is too long... and on and on and on. She started to cry and he told her everything would be okay. When it was time for him to go, she went into the hallway and hit her calendar with two fists. "I'm not going and you can't make me!"

Oh this is fun.

Sometimes I really hate being the mom. I hate having to drag my furious daughter to doctor's appointments, hate having to hold her down when they need to do blood work, hate bribing her to get in the car. I hate the long drives, the long hours, the endless paperwork. I hate my daughter's screams of rage and then the tears when she realizes there's nothing she can do to stop it.

At dinner she looked directly at me and said, "The doctor wants to control my entire life!"

That is probably exactly how it feels to her. She has very little say about what happens to her. All she can do is fight for the meager control she has.

Where is the balance in all of this? How do I help her stop feeling so helpless, while also providing the care she desperately needs? How can I help her understand doctors are trying to help, not torture her?

Maybe the councilor and the therapist tomorrow will help me find some answers. But for now, this really sucks.

The first New Year in ages I haven't been depressed.

noreply@blogger.com (Terena) — Wed, 04 Jan 2012 18:00:00 +0000

I can now say with full certainty that the antidepressants are working, because this is the first year in... wow.... at least 20 years I haven't been depressed on New Years. Every year on New Years Eve, I would think about the past year and all of its trials and struggles. Then I would think about the coming year and the trials and struggles that were sure to come. Rather than feeling hopeful and excited, I'd feel the weight of the past year and think, "Thank God it's over." The future didn't hold much promise for things getting any better; it would be more of the same: work, fear, struggle and stress.

But not this year. The blues hang around on the fringes of my thoughts, but haven't taken the spotlight. I feel weary from an eventful year, but not beaten. The future is full of uncertainty as usual, especially with Queen Teen, but I'm not afraid of it. There's a sense that whatever may come, we'll all manage. I'm not exactly excited and hopeful, but I am certain that life is good and we are blessed.

I'm still not in love with this medication. It makes my brain hop around like a hyperactive squirrel on steroids, or like my dog, a geriatric boxer who thinks sitting means spinning around in circles. And I'm barely eating, something I need to keep an eye on so I don't lose too much weight. Luckily I gained about 11 pounds in grad school so I had the weight to lose. It also makes me chronically veracious, and not in a good way. Ask me my opinion and before my brain is able to send the signal to keep my mouth shut I've said exactly how I feel. Not a good thing to do at work... in front of your boss... while you're still on probation.

Hyperactive truth-telling is better than suicidal urges, though.

New calendar, fewer challenges

noreply@blogger.com (Terena) — Mon, 02 Jan 2012 18:08:00 +0000

Taking the 2011 calendar off the wall, I flipped to January to see what we were doing last year. I was still an intern then, shadowing Laura Fogg as she taught visually-impaired students all over Mendocino County. At the same time, I interned for the Earle Baum Center, working with one elderly lady in town. I flipped through February, March and April, when my days were packed with teaching and also studying for two big exams. Finally came May with the 21st circled in black marker: graduation!

After graduation came the summer when my body crashed from exhaustion and my brain decided to stop absorbing serotonin (gee, I wonder why). In August, I started my new job as an Orientation and Mobility teacher, the position once held by Laura Fogg, my aforementioned master teacher. I sat in the driver's seat of the county car and taught my own caseload of visually impaired students. In a flash came December and the holiday season. Then the year was gone.

I think 2012 is going to be a tad bit calmer.

I am amazed by everything I've accomplished in the last few years. Amazed because I wasn't sure I could do it. I've got a lot more gray hair now than I did when I started grad school, but I guess that's a good trade off for a steady paycheck. My stress level is still way too high; I've been living on deadlines for so long I've forgotten how to live my life without them. Everything has a due date in my mind, including cleaning the fish tank and reading a book. So 2012 will be the year I learn to let go of those self-imposed "due by" actions. By 2013 I will be calm and organized.

Wait a minute, did I just give myself another due date? Stop being a stress monkey before the end of this year.

Old habits are hard to break, as they say. And really, have I ever not been a stress monkey?

One thing that hasn't survived well is my book publishing company. It's still alive, but has taken a major beating while I've been in school. My last book sold decently well, but not enough to cover the book costs and help the press. And it looks like the domain name expired so the website is gone! I could have sworn we renewed it, but the site is down. I need to figure that problem out immediately (sometimes due dates are a good thing). I signed a new book with a new author I'm excited about, so I really need to get the press back in order. A shot of cash and some new blood is just what the doctor ordered.

There are no new mountains to climb this year, thank goodness; I'm not allowed to hunt for any new challenges either. Instead, I will focus on my daughter and helping her transition into adulthood, my new job as a teacher, my publishing company, and writing plays. As usual, I'm doing too much, but I like it that way. I can juggle this much if I remember to breath now and then, and not worry about how quickly I get it all done.

Happy New Year, everyone. May it be filled with love, creativity, and enough challenge to make you feel alive, but not so much you forget to laugh.

Solstice: The holiday that celebrates nerdiness

noreply@blogger.com (Terena) — Wed, 21 Dec 2011 18:09:00 +0000

image from http://www.realmagick.com/solstices-and-equinoxes

Solstice is a big event in my family. We decorate the Solstice tree, string the house with as many holiday lights as we can before blowing the fuses, and open most of our presents. It's the day we celebrate our family, just the three of us. There are no outside obligations, like mom wondering why we didn't invite her over, or long drives in Christmas traffic. We often have a few friends over to share a good meal and some good bottles of wine. It's a relaxed, carefree, do whatever we want, kind of holiday.

Plus, Solstice is really frickin cool!

Solstice is a celebration of the return of sunlight. The Sun has traveled as far to the southern horizon as it can get in our hemisphere and it will now begin to climb back toward the north, bringing longer days with more light. Yes, I know, the Sun isn't actually going anywhere, the Earth is doing all of the traveling, and it's the angle of the Earth in relation to the Sun that changes the Sun's position. Which is exactly why Solstice is so cool. The Earth has traveled to this specific position on it's journey around the Sun, marking the exact location where the days will begin to get longer for us. This is as dark as it's going to get.

Ancient peoples marked this occasion and celebrated with bonfires and music, which is where we get Christmas lights and Christmas carols (maybe I made that last one up). We can't light a bonfire in our yard anymore or the cops get upset, so we wind hundreds of colorful lightbulbs all over our homes to chase away the darkness, just as our ancestors did with their bonfires and candles.

I'm not a pagan (technically I guess I am because I'm not Christian), so my family doesn't attend the Pagan celebrations in our community. I guess you'd call me a Scientific Pagan; my holidays focus on astronomy and nature. I drink champagne when NASA sends a new probe into space, or when scientists discover something new about the universe. I was absolutely giddy when they discovered a new planet in the "Goldie Locks zone." And I cried when the last Space Shuttle flight landed. No more launches.

Solstice and Equinox are the holidays that let me fly my nerd flag, when I can debate with other nerds the exact time of day winter begins. The Winter Solstice happens at the exact same moment all over the world, and is officially clocked in Universal Time at 5:30 pm on December 22nd. But what is the exact time in our own timezone? Here is an article from Earthsky that will help you determine the exact clock-time for your timezone. For Pacific Daylight Time (my own timezone) I need to subtract 7 hours from the Universal Time (5:30 pm on the 22nd - 7 hours = 11:30 pm on the 21st). Did I do that right?

I'm a science nerd, but unfortunately not a math nerd.

The universe is more beautiful and mysterious than you can possibly imagine, filled with wonders and constantly evolving. As soon as you think you've got it figured out, a new discovery will shake your hypothesis into nonsense. And the Earth, our planet, our home, is this beautiful vessel filled with just as much beauty and wonder as the universe it was created from. We should honor that wonder. Recognize the impossible odds that allow us to be here.

This is why I celebrate Solstice. This is why I proudly call myself a nerd.

The most beautiful perspective on Autism I have ever read

noreply@blogger.com (Terena) — Tue, 20 Dec 2011 01:00:00 +0000

This essay, written by Julia Bascom for Shift Journal, is the most beautiful and well written perspective on autism I have ever read. Ms. Bascom is autistic and writes about her experiences on her blog, Just Stimming.

Here is an excerpt from her essay, The Obsessive Joy of Autism:

image from Shift Journal

"I flap a lot when I think about Glee or when I finish a sudoku puzzle. I make funny little sounds. I spin. I rock. I laugh. I am happy. Being autistic, to me, means a lot of different things, but one of the best things is that I can beso happy, so enraptured about things no one else understands and so wrapped up in my own joy that, not only does it not matter that no one else shares it, but it can become contagious.

This is the part about autism I can never explain. This is the part I never want to lose. Without this part autism is not worth having."

To read the rest of her essay, click this link. You won't be disappointed.

Queen Teen doesn't have autism, but this essay helped me find new patience with her. Sometimes it's hard to accept who she is, when I still harbor the dream of what she could be. There are days when I'm really sick of all the challenges we have to deal with, but I'm sure her frustration is even greater. She's the one who has to live it; I'm just support staff. Sometimes it's hard to slow down and let her be herself when the world is pushing her to fit in, go faster, be "normal." But when I do, she shows me a world filled with more wonder and joy than any neuro-typical can see. This is her life and she lives it the best she can, usually with a smile on her face. She is strong and smart; don't let her visible frailty fool you. Queen Teen is a force to be reckoned with.

Lead Free?

noreply@blogger.com (Terena) — Wed, 14 Dec 2011 05:19:00 +0000

While Christmas shopping at a department store, I was perusing the toy aisle when I saw a Disney Princess jewelry set that proudly announced on the package in bold, sparkling letters, "Lead Free!"

Wait a minute...

WTF?

I know there have been warnings about lead in toys for years, but seeing that little package of pink plastic, Sleeping Beauty inspired necklaces with the happy announcement that the contents were indeed "Lead Free" made me look around the rest of the toy aisle nervously. I stared at the Barbies in their party dresses and sequins, at the Dora the Explorer play-sets and the Play-School dollhouses with brightly colored plastic furniture, and then at the plastic model ponies. So many lovely, entertaining, fun things our children can play with.

Which ones are full of lead?

And if they are full of lead, why are they being sold to anyone?

Why is it okay for a business to create, import and distribute toys that are toxic to play with? Do the people who sign off on toxic toys as "safe" know they're approving potentially harmful items to kids? And if so, do they then allow their own children to play with them?

Okay, maybe I'm making a big leap here by assuming that just because a toy doesn't have a "lead free" sticker it must be full of lead. This is probably more a marketing gimmick than a statement of fact. But you gotta admit, it does raise a lot questions about the toys are kids are playing with.

Often I hear a politician or business leaders say on the news that stricter controls on lead and other toxins would be bad for business and could cause larger economic harm. They say if manufacturers had to test for hazards, or if those hazardous materials were banned from toys and other items, thousands of jobs would be lost because of the drop in profits for the business.

But I want to know, why should we have to trade the health of our children for jobs?

When I run the world, there will be no toxins, especially lead, in any toy or item of clothing or food or anything our kids might come in contact with. Period. No exceptions. And anyone who bitches about how taking toxins out of consumer goods is "bad for business" will be fined one million dollars. That money will go directly to children's health care.

It will be a great day when every single toy can have a label proclaiming "Lead Free." It will be an even better day when lead in toys will be such a thing of the past a "Lead Free" sticker will be considered quant and old-fashioned.

If you'd like more information about lead and products that may contain the toxin, check out the Environmental Protection Agency website at http://www.epa.gov/lead/

We are all the 99%

noreply@blogger.com (Terena) — Sun, 04 Dec 2011 22:08:00 +0000

With the Occupy Camps being shut-down all over the country, the question is, "What now?" Is the movement over? What was the movement about, anyway?

The occupation camps have been a demonstration of a larger movement, not the movement itself. The demand for economic justice hasn't ended because the tents have been removed. Economic Justice is the point. The movement continues whether people are camping on Wall St. or not.

The simplest way we can show our elected officials that the demands of the people must be listened to is to hang a sign in our windows declaring "I am the 99%." Imagine what a statement that would be if every person in this country who has been effected by budget cuts and unemployment, medical hardship and foreclosure, the loss of their retirement and savings, put a sign in their front window stating that they are the 99%. And it doesn't matter if you're a Democrat or Republican, "red" or "blue", conservative or liberal or something in between. If every person who is angry about the way our economy has been impacted by greed put a sign in their window, there would be millions of signs. You don't have to march or camp, you can simply hang a sign.

We're all in this together, people. We're all effected by economic injustice. Our leaders need to see that we're awake. Otherwise, nothing will improve.

I am the 99%

The fear of falling.

noreply@blogger.com (Terena) — Wed, 30 Nov 2011 16:25:00 +0000

It was a scary couple of weeks after Queen Teen's fall. Her hand remained swollen and bruised, and even though the first set of x-rays showed no fractures, we waited anxiously for the second set to confirm. Sometimes it can take several day or weeks for a fracture to become apparent in an x-ray. Queen Teen wore a big black wrist brace and couldn't use her walker. Instead, Rick or I helped her walk.

But the worst thing was the depression. She became more sullen and moody every day. School was out for Thanksgiving break (a whole frickin week!) so there was nothing to distract her. She was mighty sick of movies after day three, and the distraction of Thanksgiving day only helped a little. By day five she was lying on her bed weeping because she couldn't find the Evil Step-Mother figurine that goes with the Cinderella. Plus, it was raining, which always puts her in a bad mood. I felt so bad for her and tried everything to keep her distracted and entertained, but when you can't even look at a book because your hand hurts too much, there isn't anything that will cheer you up. Happily, the second set of x-rays confirmed no fractures.

We all survived Thanksgiving break (mostly) and she went back to her doctor the first day of school. The doctor pushed and pulled on her wrist and hand to double check for hidden fractures or cracks, but other than a sore thumb and a couple of small bruises, Queen Teen seemed fine. She returned to school with a big grin on her face and we announced to her teachers and classmates that she was fine. She decided to keep wearing the brace though because using her walker hurt her hand without it.

Queen Teen has fallen this hard before. Three years ago she fell in the bathroom, hit her face on the sink, and knocked out a front tooth. Usually she falls about once a day, landing on her butt. Her pale skin is typically mottled with bruises, especially on her legs and feet. We've all become somewhat immune to the fear when she falls. Queen Teen curses her ataxia and gets back up on her own. Sometimes she needs help, like the day she fell into her closet and couldn't find a handhold to pull herself out. When I hear her fall in the next room, I listen closely to see if she's okay, but continue with what I'm doing. If we all didn't adapt to the worry of falling, all three of us would be drinking Vodka before 9:00 am.

But this fall felt different, because this fall scared her. Yes, she was seriously injured, which will rattle anyone, but in the days following the accident, she seemed scared to move. Not just because it hurt her wrist, but because she seemed afraid she might fall again. And I was nervous. The terror I felt when we thought she may have broken her wrist was oppressive. I still can't shake off the fear, the thought that she didn't break anything... this time. What about next time? What if she breaks her leg? She and I clung to each other a lot more than usual, and not just because of the injury or the fact that she needed more help. Our confidence in her ability to always get back up when she fell was shattered.

Queen Teen recovered more quickly than I did. One morning I heard her try to walk to the bathroom on her own, heard her shout "Whoa!" as she began to fall. I jumped out of bed and ran to her side, scolding her to wait for me, to be careful, to not fall down. She let me help, and for a few days I heard her say to herself, "You have to wait for help. You can't do it by yourself."

Shit... have I just made it worse by telling her she can't?

Luckily, Queen Teen isn't a girl who sits and waits for long. She started moving around her room on her own again by holding on to the furniture, and once the second x-rays showed no fractures, I let her. I had to force myself to go back into the other room and let her walk alone. She had to prove to herself she could do it, that she was safe, that she was strong. I had to clamp down on my fear that she would fall again. I had to have faith in her ability to keep getting up.

Today when I took her to school, several of her classmates came out to the car to greet her. They wanted to help. So I brought the walker to her as she got out of the car and allowed two of her girlfriends to guide her into the class. Watching them closely, my heart pounded and I had to force myself not to hover. Queen Teen walked into the class and she was quickly surrounded by a large group of friends who said hi, patted her on the back, touched her hand, asked her if it still hurt, was she okay, could they help. Her aid then entered, looking a little frazzled that she hadn't been there to help Queen Teen inside. This was where QT feel, so the staff and teachers are very nervous about having her walk into the class on her own. I understand, but I have to let her do it. And with that many students surrounding her, supporting her, making her feel safe, I know they won't let her fall.

Queen Teen knows that too.

A great big, epic gravity check.

noreply@blogger.com (Terena) — Wed, 16 Nov 2011 22:02:00 +0000

Tuesday morning at 7:45 the phone rang. "Hi, this is Queen Teen's teacher. I wanted to let you know that she fell. She seems okay, just embarrassed. We didn't see it happen so I'm not sure how she fell, but the other students told us and when we got to her she was sitting on the floor. It looks like the brakes on her walker stopped working. Can you fix them?"

"She's okay?" I asked.

Her teacher said she looked fine, just shaken up, so I told her I would be there with tools to fix the walker after my hair appointment.

But when I got to school an hour later, Queen Teen was definitely NOT okay. She was sitting at her desk with an ice pack on her right hand and the school nurse by her side. QT's hand was swollen and black and blue. Did she break it? I felt like the worst mom on the planet because I'd chosen to get my hair done rather then rush to my daughter's aid. But they told me she was okay!

I took her to the ER where we sat for three hours, got some x-rays, and were told it was a bad sprain. They wrapped it up and told me to take her to her primary doctor the following day. Really, a bad sprain? Should it be so swollen if it's just a bad sprain?

Her primary doctor wasn't so sure. "Queen Teen may have broken a tiny bone in her wrist. It's hard to tell right now, but this area is very tender." She explained that there's a small bone in the wrist that is prone to breaking when people fall on their hand, which is probably what Queen Teen did. It can be hard to see at first in an x-ray unless you're really looking for it. She told us to get another x-ray next week and come back to see her after Thanksgiving. Then she put a wrist splint on Queen Teen's hand and told her to take it easy.

Take it easy? Easier said than done. This morning at 5 AM I was woken by my daughter yelling, "WHOA!" Leaping out of bed I dashed to her room and found her trying to walk across her room without her walker, in the dark, with only one hand to catch herself. She can't use her walker because she can't put any weight on her wrist, so Queen Teen figures she'll just walk on her own anyway.

Isn't this the same girl who hurt her hand and wrist because she was trying to get her backpack off her wheelchair on her own, but when it got stuck she jerked it and then lost her balance (she finally admitted that was how she fell)? Isn't she the same girl who spent THREE HOURS in the ER yesterday?

Yes, this is the same girl. My stubborn, tenacious, independent daughter who seems to think the laws of gravity do not apply to her.

This is why I have gray hair, bags under my eyes, permanent knots in my shoulders and pain in my stomach.

Maybe it was all those times she fell learning to walk and we'd just call it a "gravity check," which made her laugh and get back up again. When she was three she weighed 25 pounds and the ground was only three feet away from her head. At sixteen she weighs 95 pounds and the ground is five feet from her head. Gravity hurts a lot more now.

Thank goodness for "Sponge Bob" and Starbucks Vanilla Cream Frappuccinos; we might survive the next few days.

What is Veteran's Day?

noreply@blogger.com (Terena) — Fri, 11 Nov 2011 23:12:00 +0000

Queen Teen came home from school yesterday frustrated. "They were trying to tell me why there's no school tomorrow, but I don't understand." It's Veteran's Day, but Queen Teen has no idea what a veteran is.

I showed her pictures of soldiers and told her they are people who work very hard for us. That's why we all say thank you to them on Veteran's Day. She studied the pictures and asked a few questions, but still looked confused. Then she asked what one of them was carrying.

"That's a gun," I said.

She stared at me, unable to hear me. So I pantomimed the universal finger sign for gun that every four year old knows. She shook her head.

"I just don't get it."

My daughter has no idea what a soldier is, or a gun. She doesn't know what war is, and doesn't understand killing. And I decided I'm okay with that.

But that doesn't mean I don't think about our soldiers. I have a great respect for our soldiers and I worry about them fighting in Afghanistan. In fact, it drives me crazy that people so easily forget that we're at war. We go about our daily lives untouched by the hardships they face every day, our biggest complaint being the price of gas. And it enrages me how our elected officials fight over raising taxes or reducing the deficit. Really? You don't understand why there's a huge deficit? It really has nothing to do with the fact we've been fighting two wars for the last ten years? And I know no one wants to think about this, but maybe if our taxes were higher and we were forced to live with the specter of war every day, we'd all demand that the troops come home now. What better way to bring down the deficit then to bring home our soldiers safe and alive?

This Veterans Day, let's remember the men and women who are fighting and dying right now.

4th anniversary of the first book I published, or, how I became an orientation and mobility teacher.

noreply@blogger.com (Terena) — Wed, 09 Nov 2011 16:31:00 +0000

This past weekend marks the four year anniversary of when I published the first book from my press, Medusa's Muse. Traveling Blind: Life Lessons from Unlikely Teachers, by Laura Fogg, is a memoir of Laura's 30 + years teaching children with vision impairments, and ultimately what those children taught her about life, love, loss, and joy. Laura has been my daughter's teacher since Queen Teen was 3, and when I discovered Laura was also a talented writer, I offered to publish her book. After a year-and a half of edits, revisions, and debates over cover design and font choices, her book was launched at the California Association of Orientation and Mobility Specialists Conference. The other teachers were excited and impressed, and we sold almost 100 copies in two days. Laura was ecstatic and I was thrilled. I was also intrigued by the other O and M teachers I met at the conference and the work they so obviously loved doing. A few days after the launch of Traveling Blind, I decided to go to Graduate School and become an O and M teacher too.

Four years later, I attended the Orientation and Mobility Conference again, this time as a credentialed O and M Specialist with a Master's Degree and a job working side-by-side with Laura. I'm still a publisher, but I'm also a teacher, working with visually impaired students throughout all of Mendocino County. It was a long, exhausting crawl to get my degree, as many of you saw if you've been reading my blog for the past three years, but so worth it. I love teaching, I love Orientation and Mobility, and I love my students.

The conference is held every other year in Monterey at a hotel right on the beach. About half of my classmates from SF State were there, as were my teachers. My main focus as a teacher was learning about GPS systems for the visually impaired because I have a student who may benefit from using such a device (see, I already sound like a teacher. "may benefit from using such a device." lol). On Saturday was a GPS treasure hunt in downtown Monterey where teams of six competed against each other to find all the clues and get to the last location before anyone else. Our leader was a visually impaired man who just so happens to be the President and CEO of Sendero Group, the manufacturer of the GPS we were using. Is that why we smoked the other teams, arriving 20 minutes before anyone else at the bar, where we waited near a warm fire and drank cold margaritas? But the best moments for me were when I got to spend time with my classmates, catching up on our lives and our teaching jobs while sharing wine and champagne. I've missed everyone so much! It's like we're part of a submarine crew, a small group of highly trained people sharing very specific experiences that hardly anyone else can really understand.

There was a raffle to raise money for the scholarship fund, so I donated four copies of Traveling Blind. As I was sitting in the audience listening to a speaker talk about the pros and cons of using GPS on a smart phone, it suddenly hit me how much my life has changed since the first time I was at this conference. Last time I was a publisher sitting behind a table covered in copies of Laura's book. Now I'm a teacher, just like Laura.

I'll always be a book publisher; no way will I give that up. But it's very hard to make a living publishing books, so I teach to support my book habit. Thank goodness I love my "real" job.

New Video from Heavy Load

noreply@blogger.com (Terena) — Fri, 04 Nov 2011 16:22:00 +0000

"They call me retard.... they call me mental.... they call me special.... THAT's NOT MY NAME"

Paul Richard of Heavy Load is a contributor to the punk anthology I edited and published, Punk Rock Saved My Ass. This song off his band's new album, Wham, shows perfectly how they feel about being called "special," or anything else that labels them. You've got to see this, and pass it on

No more trick-or-treating

noreply@blogger.com (Terena) — Tue, 01 Nov 2011 16:37:00 +0000

Queen Teen has decided she's a little too old for trick-or-treating. After panicking that her princess dress was too small, and sending her dad on a frantic hunt to find a new dress, Queen Teen announced that she didn't want to dress up after all.

Teenagers, the inspiration for Doctor Jekyll and Mr. Hyde.

Instead, she and I wore our Minnie Mouse ears and walked downtown to see all the little ones in their cute costumes go trick-or-treating at local businesses. Spider Man seemed to be particularly popular with the 5 to 9 boys, and Princesses were a favorite for the 50th year in a row for the young girls. Queen Teen loved the babies dressed up as pumpkins and teddy bears and butterflies. We didn't intentionally hunt for candy with the crowd, but many of the businesses handed us candy anyway, and many commented on our Minnie ears, which made Queen Teen giggle.

Maybe not too old to play dress up?

That night, she helped me hand out candy to the trick-or-treaters, who "oohed" and "aahed" over our yard of decapitated pumpkin heads. It made me realize that Halloween has changed for Queen Teen, but she still enjoys it. Instead of our family just focusing on her and what she wants to be (princess, princess, princess, princess...), we can now focus on decorations and handing out candy. We can be that "cool house" all the kids know about and drag their parents to see. The house with the scary yard and the really good candy.

Oh yeah... this is gonna be fun.

Vlad the Impaler's jack-o-lantern collection

noreply@blogger.com (Terena) — Mon, 31 Oct 2011 15:19:00 +0000

My husband and I spent several hours on Sunday carving pumpkins and decorating the front yard. Inspired by Vlad the Impaler (aka Dracula), he made spikes out of metal and wood while I started carving pumpkins. When we impaled a jack-o-lantern on a spike, it made a satisfying, popping, squishy sound and pumpkin goo slid out of the puncture. Gruesome!

Happy Halloween, from my muse, Medusa

noreply@blogger.com (Terena) — Mon, 31 Oct 2011 14:27:00 +0000

Medusa pumpkin carved by Ray Villafane. See more of his carvings at http://www.telegraph.co.uk/news/picturegalleries/howaboutthat/8087634/Bizarre-Halloween-Jack-OLantern-pumpkins-carved-by-Ray-Villafane.html?image=4

People with disabilities are the 99%

noreply@blogger.com (Terena) — Tue, 25 Oct 2011 22:10:00 +0000

image from http://weknowmemes.com/2011/10/50-cities-that-have-joined-the-occupy-wall-street-movement/

On Saturday, my husband, father and I drove two hours south to San Francisco to march with Occupy San Francisco, which is affiliated with Occupy Wall Street. We felt we needed to be there for our daughter, Queen Teen, and others who have disabilities. Services for people with disabilities and the elderly are being cut to dangerous levels. Health care, supported living, therapies, In Home Support Services, jobs programs, day programs, and every other service necessary to the health and well being of people with disabilities have been slashed. People are being forced into nursing homes because no one can care for them in their homes. Imagine what it must be like for a 25 year old man with a disability to live in a nursing home, surrounded by the elderly and the dying, just because he needs a physical attendant to survive. The wealthy can get all the health care and supports they need while the elderly and disabled are forced to choose between food and medicine. This is a crime, and any civilized nation should be ashamed. I will not sit silently while one more person with a disability is killed because of "budget cuts."

The other reason we needed to go was because last year we almost lost our house. My husband had been laid off for the second time in 5 years and was unemployed for over two years. We tried getting help from our lender, Bank of America, but they wouldn't talk to us. We didn't qualify for any of the programs available to help people from being foreclosed on because we actually did everything right. We had a traditional 30 year loan at a good, fixed interest rate (for then) and put down a large down-payment. We were never late on our payments and when we had to refinance the first time my husband had been laid off, we refused when the bank wanted us to pull out ALL of our equity. They practically begged, but we only took what we needed to survive. But then, 3 years later when we needed to refi because he had been laid off again, B of A wouldn't grant us an interview. They got bailed out... we got ignored.

The protest and march were small and disorganized, but the people were passionate. It was a mix of old and young, but the young were the majority. Different races and different cultures were represented. I saw young professionals walking side-by-side with tattooed hippie kids. The image you see on the news is that the OWS (Occupy Wall Street) movement is primarily made up of communist and anarchist kids who have nothing better to do then drum and rant about revolution. That image is only a tiny part of who is really there. I am a working, highly educated, middle class, woman from a small town and I saw many more people who would fit into my demographic. The idea that there is no message or cohesive point to the rallies and marches is ludicrous. Pay attention! This is a wake up call to our government demanding that our needs, the 99%, become more of a priority then multi-national corporations and banks. I don't know who payed for Obama when he got to be President, but he sure doesn't seem to be listening to us anymore.

We marched from the Federal Reserve Bank up Market Street to Civic Center Plaza near Van Ness Avenue. It was peaceful, but loud. The police traveled along side us in their cruisers, watching us with impassive faces, keeping us from blocking the road, but allowing us to walk in it. I ended up walking on the outside of the marchers closest to the police and it felt eery having a cop car slowly moving beside me while I shouted, "Who's streets? Our streets!" The march was going all the way up to the Mission District and Dolores Park, but we couldn't stay that long. We had to be back home by 9:00 p.m. for the sitter. Queen Teen had stayed home because we felt the noise and all those people would be too scary for her. Plus, it's hard to run away in a wheel chair if the protest gets violent. I've seen the pictures from New York City. We may be peaceful, but sometimes things happen. We may not be able to camp out with the protesters, but we supported them the best we could.

Occupy Wall Street is growing all over the country, including here in Ukiah. I'm excited. Perhaps as the OWS grows, our government and our president will finally start to think about the rest of us, the 99%, and the responsibility we all have to support those who need our help.

Stop the killing of people with disabilities through draconian budget cuts. I will gladly pay more taxes if it will save a life. Wouldn't you?

Keeping it Real

noreply@blogger.com (Terena) — Sat, 22 Oct 2011 19:46:00 +0000

How much information is too much? After I wrote the post about my struggle with depression, I had to ask myself that question again. Am I sharing too much, especially now that I'm a teacher? What if my boss or co-workers read my blog, or the parents of one of my students? How will they feel learning that I need to take medication just to get out of bed in the morning?

But after thinking about it for a while I decided to go ahead and click "publish." This is who I am. I'm not trying to get sympathy votes and I certainly don't want to sound whiney (whiney people bug the hell out of me, so I hope that's not how I sound!). I simply want to keep it real. Depression is a very real part of my life, as it is for thousands of others, especially parents of special needs kids. Just the every day stress and fatigue can make even the toughest person start to crack. There is only so much a human brain can handle before it decides to go on strike and stop absorbing serotonin. If my honestly about depression can help others, then my blog is doing its work.

I've always been forthcoming. Too forthcoming! I know it, and I've tried over the years to keep things quiet and close to the vest, but it's so against my nature it makes me feel like I'm trying to wear a wool sweater against my bare skin (I'm allergic to wool). So I gave up. I'm more selective as to where and when I speak my mind, but I still suffer from severe oversharing. My friends understand and seem to put up with me. People who think I'm weird stay away.

I'm just as eager to know about you, too. What do you think? Hope for? Need? What makes you mad, and what makes you so happy you almost piss your pants? What were you like in the 3rd grade and what do you think you'll be like when you're 80? I love hearing people tell their stories, which is one of the reasons I love blogs so much. Don't just post a recipe or a photo of a cute kid, and please don't try to sell me something by reviewing it. Tell me a story.

This is also why I love publishing memoir. Even though it is extremely hard work helping a writer tell her story in a way other people will want to read (no one wants to read about why you bought green pants at K-mart on Jan. 3rd), after three years of being a publisher I still love editing memoir. Human beings and the epic nature of their lives make fascinating reading.

So I'll keep writing what I think and how I feel, and I'll hold fast to keeping it real.

(cool, I made a rhyme)

Depressed? Enter a Drag King contest.

noreply@blogger.com (Terena) — Mon, 17 Oct 2011 15:49:00 +0000

It was time to do something drastic. I've been living with depression for months, coping with side-effects from different medications while searching for the one that would make me stop being suicidal. The weight of it all is exhausting. So I entered a Drag King contest.

The event was hosted by our local chapter of PRIDE to raise money for their community grants program. The theme was "Marie Antoinette" and the hosts of the event wore elaborate 17th century French gowns with oversized powdered wigs. The stage manager wore a man's suit in the same style, complete with powdered wig and powdered face. The audience came in costume, some inspired by the theme and others simply celebrating Halloween. My husband wore a kilt and Valkyrie outfit, torpedo boobs, braids, horned helmet and all. I wore a blue velvet frock coat with lace cuffs and my shiny black boots, my hair slicked back. And then I drew a mustache and goatee using a .99 Wet and Wild eyeliner pencil. With my little round glasses I felt more "Sergeant Pepper" then French Revolution.

I performed to Depeche Mode's "Martyr" which gave me lots of opportunity to interact with the audience. Kind of sexy, very danceable, the song is all about giving yourself completely to love, even if it destroys you.

"I've been a martyr for love
And I will die in the flames
As I draw my last breath
As I close in on death
I will call out your name"

So much drama to work with! It was great. The audience cheered and waived dollar bills at me, tucked them in my boots and down my shirt, swooned when I knelt at the feet of one woman, laughed when I used my mic as a... lets just say prop. I had so much fun lip syncing and dancing it was hard not to leap on tables (they were plastic. it would have been a bad way to end my routine).

Judging was done by audience cheers, and the cheers were split between me and another woman in drag. Because it was so close, we had a dance off. I was already winded from my performance, now I had to dance one-on-one with a 24 year old girl who could dance circles around my tired 44 year old ass. I just leapt all in, acting cocky and sexy and wild.

And I won.

I am now the Drag King of Ukiah.

Depression is not for Wimps

noreply@blogger.com (Terena) — Sun, 09 Oct 2011 21:17:00 +0000

August and September have vanished. All of the sudden it's fall, and yards are beginning to be decorated with pumpkins and dancing skeletons. I missed the end of summer because a dark haze of depression took over. When I finished school I got a serious case of the blues, which I was told pretty much everybody feels when they finish grad school. So I didn't worry about it to much. I figured I was worn out from stress and the energy it took driving back and forth to San Francisco for classes and then studying every day. But instead of getting better, my feelings of futility and fatigue got worse. By July I was fighting inertia just to get out of bed. By August, I was dreaming of killing myself. And then when I wanted to cut my wrists with the knife I was using to chop an onion, I knew I had to get help. This wasn't just post-grad school angst. This was full on, life-threatoning, depression with a capitol "D".

So began the trials of finding the right medication. The first one my doctor prescribed made me manic and gave me such horrible panic attacks the first week I couldn't leave the house. I became agitated and couldn't eat. I guess some people pay good money for Crank to feel like this, but I hated it. After three weeks when the side effects didn't go away, I called my doctor and asked for something different. Problem is, none of the SSRI's work for me; Paxil, Zoloft, Celexa... out. That meant trying a new class of anti-depressents which of course, my insurance wouldn't cover. Oh well, I can't spend my days wishing I was dead. Makes it hard to get anything done.

Now I'm on a different medication which seems to be working well, other than feeling like an idiot half the time. My short term memory is terrible and it can be hard to stay focused. The first week I was so stoned I just sat outside and stared at the leaves on the trees all day. Luckily that wore off, and the fatigue is better, but I still feel like an elderly person who forgot why she went into a certain room.

And while all this was going on, I started my new job. I am officially an Orientation and Mobility teacher, which is exciting, and stressful. I'm trying to learn all the procedures and paperwork required to do my job, let alone teach. Luckily I only work part time. When I started this new medication I decided I shouldn't be driving children anywhere, let alone my own kid, so I missed half a day of work. But overall, I'm managing.

This has been a real test of my will-power; first I fought to keep myself from doing anything stupid, then I had to deal with overwhelming side effects, all while taking care of Queen Teen and starting a new job. My husband has been wonderful and really supportive, and the few friends I told about my depression have been incredible. One friend drove all the way up here from Petaluma just to take me out to lunch. And now my father is here, helping with child care and keeping me from brooding.

I feel that I am on the mend and finding my strength again, but it can feel like failure when you hit this level of depression, like I can't "hack it." I beat myself up for my apparent "weakness." Just like any medical issue, though, sometimes it takes accepting that you need help and taking medication to become well again.

I am Wonder Woman! Super Mom! I don't need no stinking medication to keep me sane.

Yeah, I do.

Please, if you're feeling like I did and are too ashamed to admit it, remember that you're not alone. Many people have major depression, even someone like me who people think is so "together." Get help. Don't wait so long that you get the impulse to kill yourself. It takes a lot of strength to go to your doctor and admit you are miserable, far more strength than jumping off the Golden Gate bridge. It takes courage to stick around and work toward wholeness. Depression is not for wimps.

Never blog drunk

noreply@blogger.com (Terena) — Thu, 28 Jul 2011 03:02:00 +0000

Have you ever written something for your blog, posted it, then a day later re-read it and asked yourself, "What the hell did I write?"

Yeah, me neither.

A few of you read my last post called "Too Much Information" (thank you Barbara for commenting), which was me questioning just how much information about my daughter and my personal life I should really be putting on the internet. There were also some rambling thoughts about privacy and how much time I spend writing my blog when I should be working on my book. All good things to think about, but when I wrote them down I had just shared a bottle of wine with my hubby. Hence, I wrote a rambling piece about something important that didn't make any sense. I knew what I was trying to convey, but wine got in the way.

No big deal, until you're convinced it's the most brilliant thing you've ever written on your blog and must be posted immediately.

Queen of the Den of Chaos

noreply@blogger.com (Terena) — Mon, 18 Jul 2011 16:00:00 +0000

My sister is the Queen of Chaos. She lives in a ranch house in a Central Valley town with four gorgeous, energetic, and dangerously intelligent children and a husband passionate about music. Her mind is constantly flowing with ideas, plans, theories and possibilities, making it impossible for her to sit down. One idea creates another, and her curiosity is limitless. She's some kind of data-base developer for a Mega bank and I hear that she has super powers when it comes to thinking like a computer. In her free time she grows a massive garden, cans her produce, bakes bread from scratch (without using a bread maker), makes home made yogurt, and knits complicated sweaters like a pro. She's also an amazing singer and plays the Celtic harp.

Can you tell I think my sis is amazing?

We're not biologically sisters, but in every other way, we are. We even think alike, although I admit she's got the leg up when it comes to logic. We're the same height and build, with the same hair and the same mannerisms. We became sisters 20 years ago when we worked together at the Renaissance Fair in the same "clan." It was like finding an unknown sibling when you thought you were an orphan: wow, there's someone as weird as me.

Queen Teen and I spent several days at my sister's house. Mostly, I watched my sister cook all day, preparing for the week ahead. You have to just stay out of her way and understand that she is happy to see you, even if she isn't sitting with you at the table. I guess some people have a hard time with that. Queen Teen played the piano with her cousin, Eldest, singing in her loudest, out of tune, voice. She also watched movies with the girls, but mostly she wandered the house wondering what all of those busy people were doing. She and I live a very quiet life compared to the constant noise and activity of the Den of Chaos.

Unfortunately, we don't get to visit very often. It's a long way between our houses, and Queen Teen is extremely allergic to their cat, which used to be mine. My sister took the cat when we discovered QT was allergic. So it's a wonderful treat for me to spend time with my lovely cat, who I still miss, although she's been gone three years. She sat in my lap purring happily while my sister canned the chili she made that evening and Queen Teen colored pictures with her cousin, Boo.

Boo looked up at me and asked, "Did my mom tell you spooky stories when you were little?"

Even though we've told them several times we're not actually related, the kids don't believe it.

I glanced at my sister who was checking on the yeast for the next batch of bread dough.

"Yep. Your mom tells the best spooky stories."

My sister grinned.

Playing chess with the audiologist

noreply@blogger.com (Terena) — Sat, 16 Jul 2011 20:47:00 +0000

After the Berkeley Low Vision Clinic appointment, we spent several days with the Denizons of Chaos (I'll write more about that next time), then drove to Palo Alto for an audiology appointment. Queen Teen was resigned to it, and happily distracted by three energetic girls, one loud boy and a giant house to explore. Once we reached our hotel room in Mountain View, her mood quickly changed. The sparkle in her eyes vanished, replaced by a nervous scowl. The hotel was nice (thank you Hotels.com) and we had cable TV, something we don't get at home, but nothing could negate the misery she felt thinking about the next day: audiology.

Of all the appointments she has, from neurology to dentistry to genetics to orthopedics, audiology is the worst. She likes the doctor fine, but the tedium of the tests and the reality that she does indeed need hearing aids ("No I don't," she insists, even after the hearing exam clearly shows she can't hear a blessed thing.) depresses her more than her best friend moving away.

She did her best during the test, and I told her how proud I was of her. Dutifully she put the block in the box when she heard the tone, but she also put a block in after guessing the interval between testing tones. The doctor mixed up the timing to avoid that, so it was obvious Queen Teen barely heard anything. And during the vocabulary test she got frustrated when she couldn't identify what any of the words were. I made sure she could see the pictures, and she identified them by looking, but when asked to point to the "baseball" or "ice cream", she just looked at me and said, "I can't find it."

Queen Teen is a candidate for Cochlear Implants, but there's a lot to think about before we go that route, primarily, Queen Teen's mental health. She refuses to wear hearing aids and denies that she can't hear. She cries at appointments and has a panic attack before we leave the car. If I can't get her to a dentist to have her teeth cleaned without her freaking out, how the hell will she tolerate major surgery and implants? We're concerned that she's losing language processing ability because that part of her brain is no longer being activated; hearing aids can help with that.

Before we left, the doctor took an impression of Queen Teen's ears for new ear molds to go with her new hearing aids. That's when Queen Teen started to cry, and she even tried to hit the doctor. I soothed her the best I could, then the doctor quickly made the impressions and we were out of there. We had planned to stop and visit another friend, but we were both worn out so we decided to get a head start before rush hour traffic began. That's the only plus to Queen Teen's hearing decreasing so much: the hearing tests take a lot less time.