Queen Teen vs. the new stool

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

Struggling to grow up

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!

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.

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

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

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

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?

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%

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%