Posted on in holidays

Happy Gratitude Day

“I just don’t know what to celebrate on Thanksgiving,” said my friend. “I want to spend the day with my family eating Turkey, but I hate what the day represents to so many of my friends.”

I understand completely. How can we celebrate a day that marks the beginning of the end of the Native Peoples who lived here before my ancestors came and murdered them? And yet the tradition of gathering with friends and family to celebrate what we’re thankful for has a strong place in our culture. I’ve celebrated this day since childhood. How do we make peace with it?

Take out the Pilgrims and Plymouth Rock and all that BS about the friendly Native Americans. Focus on what is real: Gratitude. What are you thankful for? Really look at it. Because that’s what we’re really celebrating on this day. Look at everything you have and say “Thank You.”

Thank you for my health. Thank you for the food on my table and the friends in my life. Thank you for indoor plumbing and clean water and the roof over my head. Thank you for the generosity of strangers who help me every day. Thank you for all the little things I take for granted and the big things I call gifts. Thank you for my life.

I acknowledge the crimes of my ancestors and I am grateful that I can make amends by learning and doing better. That’s what our country is struggling with right now, and we need to struggle with it. Glossing over the atrocities by celebrating a myth perpetuates those atrocities. The reality is that our country is young and volatile and full of bloodshed. It is also beautiful and hopeful. We can celebrate our history and mourn those who died from that history. Eat that turkey and pumpkin pie, celebrate your family, but leave Plymouth Rock out of it.

Today is Gratitude Day. Be grateful for all that is good in your life.

Posted on in life

Traveling Outside My Comfort Zone

photo of a large steel sculpture of a fish with a red heart near its tail. white snow is on the ground and there is more light snow falling.

I’ve recently returned from the first vacation I’ve had in four years. And it wasn’t just any vacation… it was a bucket list vacation. I traveled to Chena Hot Springs outside Fairbanks, Alaska with one of my closest friends to see the Northern Lights.

The first time I went to Alaska was in the summer of 1988. My boyfriend and I drove the “AlCan” from Santa Rosa California to Fairbanks Alaska in a dark brown Econoline van. There was a bed in the back and bug netting on the windows to keep from getting eaten alive by Alaska’s famous mosquitos. It was an exhausting, beautiful adventure I will never forgot, even though my boyfriend and I split up the following year. I swore I’d go back to Alaska one day and finally I did, this time in the Fall.

Fall in the Alaskan interior is icy but not yet frigid. The snow is new and it sparkles like it is covered in silver glitter. The sky looks dark blue against all that crisp white. I had no idea how much I would love the sound of snow under my feet; it really does crunch! I’m a California girl who doesn’t ski so couldn’t imagine how cold 12 degrees really is. But once I figured out how to wrap a scarf properly to keep the cold off the back of my neck, I fell in love with the touch and scent of that shivering, dry air.

And we saw the Northern Lights! It was a cloudy night so we assumed we’d miss them, but at 1:30 in the morning, the clouds thinned and a section of the Western sky opened. There was a bright white glow, tinted yellow, with absinth green streaks radiating from the top and spreading across the sky over our head, softly visible through the thicker clouds. It was quiet and still in the night and the cold pressed against my snow boots and two pairs of socks but I was transfixed. I didn’t care that we only saw one tiny piece of the Aurora Borealis; I saw the Aurora! A child hood dream at the top of my bucket list had come true.

photo of a woman in a red coat leaning against a large steel sculpture of a dragon. There is snow on the ground and on the sculpture.

This trip was more than a bucket list adventure, it was also to test my ability to let go of control and leave Rhia at home for several days. I have left her with one of her dads for weekend now and then, but this trip was different. Rhia’s needs are more complex and her health more tenuous. I flew a thousand miles away to the wilderness with limited cell service, trusting that my father, her dad and both of her caregivers could take proper care of her and handle any emergencies that might happen. I was nervous and felt guilty, but I went.

And Rhia was fine. She missed me, but instead of punishing me with angry outbursts and demands as usual, she asked, “Did you have fun with your friend?” My dad said she only yelled at him twice when he forgot to do something. Nothing bad happened when I left. She didn’t fall or get sick or stop breathing or any of the hundreds of terrors I imagined before I forced myself to pick up my suitcase and go to the airport.

Rhia has matured and I’m learning to let go of being in control of her well being. Perhaps I can go on another trip next year, maybe a longer trip, even farther away.

Where in the world should I go?

photo of four yellow sunflowers encased in a rectangular block of ice.
Posted on in internet, life, opinion, social media, writing

An Open Letter to my Stalker

Congratulations. You win. I’m scared. You swear that’s not what you want but after I’ve repeatedly asked you to leave me alone, what else can I believe from your actions? I think you enjoy messing with my head. And because of you, I almost stopped writing. I almost deleted my blog and considered changing my name when my book is published. But even though I know you read every word, which makes me cringe, I won’t be silent. Not ever again.

I tried responding to your messages on Facebook, but for some weird reason I couldn’t write back to you. I could only read the messages you sent. It looks like when I blocked you, Facebook decided that meant you could keep writing me but I couldn’t write back. Perhaps that’s for the best; there are thousands of people experiencing this same situation, both as the person being stalked and as the person who is obsessed. Maybe this letter will help others, too.

I was sorry to read that you are in so much pain and I truly hope in time you find some peace. However, you are writing to me as if I’m still that scared 19 year old girl you locked in the bathroom and threatened to kill. I assure you, I am not. That was 35 years ago. The little girl is gone and in her place is a 55 year old woman with gray hair who is fully capable of taking care of herself. The only person still in that bathroom or experiencing the harm you caused is you.

You keep asking for my forgiveness. I can forgive you as a human being because I know you were struggling with substance abuse, but I cannot forgive your actions. The only person who can forgive you is you. You also say you are in a program and want to make amends to me. You’ve done that, several times. Stop trying to make amends. They are causing pain. Go back to a meeting and focus on Step 9:

Made direct Amends to such people wherever possible, except when to do so would harm them or others.

The best way you can make amends to me is to stop trying.

You’ve mentioned my daughter recently, writing how beautiful she is and how much she reminds you of me. I need you to take a moment and think about what you are doing. Now, imagine you are in a forest and you see an adorable bear cub. You don’t mean any harm, you’re just looking. Suddenly, Mama Bear appears from nowhere to defend her cub. You have zero intention of harming the cub but Mama Bear doesn’t know that. What is the most dangerous creature in the world? A mother defending her offspring.

I am that Mama Bear. Let that image replace the image you hold so tightly of me at age 19. I am not writing this to embarrass or threaten you, I am simply telling you or the fiftieth time in 20 years, in this open letter that I know you are reading right now, to stop contacting me.

Forgive yourself. Move on with your life.

I have.

Posted on in health, mitochondrial disease, special needs, vision impairment

The Newest Normal

It has been more than a year since Rhia began losing weight, and we still don’t know why. What triggered weight loss, increased ataxia, decreased stamina, and vision loss? It began so slowly that I didn’t notice how thin she was or that her ataxia had worsened. It was like watching my hair turn gray; one day I realized I had more gray in my hair than I thought. When did the gray strands outnumber the brown? When did Rhia become so thin? Blood tests and an MRI hunted for answers but as usual nothing was found. Rhia is still the same medical mystery as she has always been.

One year later, Rhia has stabilized. She’s still too thin, but she is staying above 90 pounds. Her ataxia is so bad she rips the pages of her books when she turns them and she often pokes herself in the eye with a crayon when she colors. The only thing keeping her walking is will power. But since the beginning of the Summer she hasn’t gotten any worse. Usually she declines a little for a few months and then we all breath a sigh of relief and figure out how to manage her new normal. This decline lasted longer than ever before. Is that the new normal? Instead of a sudden crash lasting a few months her physical decline will be like a long, slow glide into looming rocks?

Welcome to the newest normal. Rhia has finally stabilized and now we both figure out how to manage the newest symptoms. She needs Physical Therapy to rebuild muscle so she can keep walking. She needs Occupational Therapy to help her learn to turn a page in a book without tearing it. She needs Speech Therapy to help her clearly speak so others can understand what she’s saying and she needs to relearn to chew her food so she doesn’t choke. She needs knee surgery to stop her chronic pain.

I need her to wear safety glasses to stop her from scratching her own eyes with color crayons. I also need her to tolerate a gait belt so I can safely transfer her from sitting to standing as well as getting in and out of the car. No matter how much I beg, or command, she won’t do either of these.

Today, this is the newest normal. Rhia is cheerful, determined, funny, and more stubborn than I, which I know is hard to believe. Her entire body trembles from ataxia now, not just her legs. Her color and contrast vision are much worse; she can’t tell the difference between orange and yellow anymore. Today she weighs 92 pounds. She’s trying to figure out how to keep doing what she likes to do and I’m trying to figure out how to help her do that.

The one thing that hasn’t changed is her smile.

Posted on in life

Guest Post by Sharon Wagner of Senior Friendly

Image: a young woman who appears to be a little person sits on a bed and types on a laptop

Image via Pexels

How to Build a Business Career When you Manage a Disability

The Americans with Disabilities Act makes it illegal for any employer to discriminate against someone on the basis of a disability. As a result, your disability doesn’t stand in the way of your ability to get a good-paying job in business. Terena Scott shares the following steps that can help you get your career off the ground.

Start with Education

The U.S. Bureau of Labor Statistics advises that a bachelor’s degree in business is required for most business jobs, and a master of business administration (MBA) degree can increase your chances of securing an entry-level position with a high rate of pay. Online MBA programs provide flexible scheduling and pacing that benefit individuals with disabilities who may require adaptations such as more time to complete assignments. Plus, online programs allow you to continue to work and care for your family while earning your degree. You can choose to pursue one of many specializations, including:

  • Accounting
  • Corporate finance
  • Marketing
  • Strategic planning

Recipients of MBA degrees can seek employment for jobs with numerous titles, including general manager, business administration director, and operations director.

Land an Internship

You’ll face a lot of competition for top jobs in business. Having internship experience on your resume can set you apart from other applicants, and you may even find opportunities for future employment at the sponsoring organization. The American Association of People with Disabilities (AADP) offers a summer internship program for disabled high school graduates, undergraduates, and graduate students. Through the program, you can land an impressive internship with a congressional office, federal agency, nonprofit organization, or for-profit company.

Network while on Campus

Networking isn’t just important once you enter the business world. Building relationships with faculty and fellow students while on campus gives you connections that can lead to work opportunities in the future. Some colleges and universities are home to chapters of nationwide mentoring and networking organizations for people with disabilities.

Help Your Resume Stand Out

Your cover letter and your resume are the first impression you give to a hiring manager. If either looks haphazardly put together, the likelihood of you hearing back is small. While you may not have a lot of experience, put your best foot forward through a well-prepared cover letter and a succinct resume describing any experience or skills. Also, set up a LinkedIn page, and upload your resume and a photo. Avoid mistakes like using an old photo, lying about your experience, leaving your profile incomplete or being inactive. Employers pick up on this, and it can hurt your chances of landing a job.  

Know Your Rights in an Interview

Employers aren’t permitted to ask if you’re disabled or inquire about the severity or nature of your disability. Even if your disability is obvious, you don’t have to discuss it; however, you may choose to. The Job Accommodation Networkrecommends bringing any assistive technology you rely on to the interview.

Use Disability Resources to Your Advantage

In addition to researching and applying for positions on your own, you can take advantage of disability employment resources during your job search. Your state’s Vocational Rehabilitation agency and your closest American Job Center office may be able to assist you with job placement or provide you with a list of openings at companies that are striving to increase diversity and eager to hire individuals with disabilities.

Get on the Path to a Career in Business Today

Now that you know the six steps for launching your career in business, you’re ready to take action. Start by researching online degree programs and completing applications as you continue your journey toward the career of your dreams.

Sharon Wagner uses her site Senior Friendly to offer advice geared specifically toward seniors to help them make healthier choices and enjoy their golden years

Posted on in media, news, social media, teaching

Teacher Needs A Drink

overcast.fm/+UJypFHNnI

Here is your opportunity to listen to teachers as they talk about the school shooting in Michigan. We’ve heard from Politicians, Gun Advocates, News Organizations, Administrators and Parents. Teachers are on the front line. It’s time to hear them. (Link to the podcast is at top of this post).

Thank you to “Teacher Needs A Drink Podcast” for being so open and honest.

Posted on in life

Mourning more than Ruth Bader Ginsburg

I am at a candlelight vigil for Ruth Bader Ginsburg. Holding my battery operated rainbow tea light in the palm of my hand, I think about RBG and how hard she fought against time and cancer. She was a small, elderly woman with the weight of democracy on her shoulders who kept fighting for us until her tiny body couldn’t support the burden one more day. She is gone and I am now very afraid for the future of many of the people I love.

More people are coming, which is both good and bad. I haven’t been in a crowd in over six months and even though we’re all outside and everyone is wearing a mask, I’m nervous. Perhaps I shouldn’t have come. I didn’t go to the Black Lives Matter marches for fear of exposing myself to COVID and then taking it home to my daughter. Across the street, two police cars are parked and the officers inside are staring at us. I look at the people around me and wonder what makes the police so watchful. This crowd is mostly white, middle aged, upper middle class women like me. The most radical thing here are the four women wearing pink pussy hats. Looking back at the police I feel sadder.

I came tonight because I need to take a moment from my fearful, pandemic driven life and grieve. I mourn the 200,000 Americans and the millions killed around the world by COVID. I mourn lost Black lives. I mourn the thousands who lost their homes to wildfire and those who died when they couldn’t escape. I mourn for the elderly trapped in nursing homes and the children kept away from their friends. I mourn for everyone who is terrified and lonely and has no idea how they’ll survive another day.

I wonder if Ruth felt that way? For all her notoriety, she was still a human being fighting cancer during a pandemic and trying to keep her job. Did she have doubts? Was she lonely? Did she cry when she listened to the news too?

Three young men approach me and one asks, “What’s going on? Why are all these people here?”

“This is a candlelight vigil for Ruth Bader Ginsburg,” I say. “She died yesterday. “

“Who’s that?” he says. The other two shrug. So I tell them about RGB and why everyone is so upset and what’s at stake with the Supreme Court. I explain what she fought for and how she protected Civil Rights. They’re impressed.

“Did she believe in Black Lives Matter?” another young man asks.

“Absolutely!”

One of them will turn 18 in two months, too late to vote in this election, which makes him mad. We talk more about voting and why it matters and then they wander away but stay close to the perimeter, talking and watching the vigil. RBG would be pleased.

More people are coming and it’s getting harder to keep my distance; time to leave. I look at my rainbow tea light change from red to purple and smile. A rainbow candle for RGB. I wish it was safe to stay and share the grief and fear with other people and I realize how much I miss this. I have been grieving all alone for too long, just like everyone at this vigil I suspect. I walk away from the crowd, get in my car, and drive back to isolation.

Posted on in disabilities, family, internet, media, parenting, special needs, teaching, video, vision impairment

Teaching Remotely on You Tube

my new classroom: a desk, a laptop and a blue background to hide my messy room

Welcome to teaching in 2020.

The photo above is my new classroom, which is a corner of my bedroom, where I spent 6 hours a day, 5 days a week. In this little corner, I sat at my desk and created lessons for my students to do on their own or I talked to them individually via Zoom. Because I work with severely disabled students, I needed to spend a lot of time remotely training their caregivers too. Some of the caregivers are parents who were suddenly providing around the clock care to their medically fragile children during a pandemic while trying to work remotely. Many of the parents had other children who needed their help with school work.

Welcome to parenting in 2020.

Making Videos for Parents

I began recording videos for parents and caregivers that explained how to educate a student who is visually impaired. It is the same information the aids and teachers get from me at school, but I needed to make it even more succinct for families. The aids at school get direct training over several months, but parents needed that training immediately. Some things they needed to know were:

  • How do you present materials so the student can actually see what you’re showing them?
  • How do you explain what is causing a particular sound when the student can’t see what it is?
  • How do you talk about what is happening in a picture or video that makes sense to a student who can’t see the details of the image?
  • What is Orientation and Mobility? How do you practice it at home?
  • How do you work on a student’s IEP goal at home?

First, I tried to think of what would have the most immediate impact on a parent’s ability to teach their child. My first video was about using descriptive language and how parents could talk about riding a bus while keeping in mind what the student is experiencing (sounds, texture, movement…). But then I realized no one was going to be taking a bus to school any time soon, so my next video lesson was about using descriptive language while cooking a meal. That one seemed to work, so I tried modeling the rest of my videos with home based learning as the focus.

I also tried to think of how to explain general concepts about vision impairment (glare, fixation, lighting, tracking, scanning… etc). Many of my students have Cortical Visual Impairment, so I’m currently working on videos to explain what that is and how to work with a student who appears to see but isn’t understanding what they are seeing.

My You Tube Channel

I shared a few videos with some friends who also have kids with disabilities but don’t attend my school. Those families have asked for more. So now I have a You Tube Channel. You Tube helped me figure out how to access Google Classroom and create content and use Drop Box and Zoom and Padlet and Flip Grid, which are all the platforms I’ve used to make teaching easier for me and easier for families. I hope that my videos will also be helpful.

What will teaching be like in the Fall?

My school is currently on summer break. Schools across my State are making plans to reopen in the Fall. Will it be home based learning again, or will students return to their classroom? Will it be a blend, with some students on campus and others at home? My students are medically fragile so many will choose to stay home, but some may want to see their friends and teachers again. Can we keep them safe? How? And how will teachers stay safe when schools reopen?

I can’t fix education during a pandemic, but if my videos can help a few parents figure out how to support their visually impaired children while they shelter-in-place, then I’ve done part of my job as a teacher. Now, does anyone know how to integrate a Vision Goal into doing the dishes?

Posted on in caregiving, disabilities, health, opinion, teaching

You have the Power to Save Lives

You have the power to stop Covid19 and save lives simply by following the guidelines of health professionals. That’s it.

No one is asking you to stay home to take away your liberties. No one is asking you to take precautions to inconvenience you. And absolutely no one wants to shut down the economy and destroy people’s lives and futures because of politics. No one.

You are being asked to shelter in place to protect and care for those most vulnerable, people like my daughter, my father, my sister-in-law, and all the medically fragile kids I work with. And by doing so you also protect yourself and the people in your family. Covid19 attacks young and old, healthy and frail, which is why everyone needs to be vigilant.

Please. I am begging you.

You are a part of a community. What you do impacts your family, friends, co-workers and neighbors. Being an American doesn’t make you invincible or give you the right to put everyone else at risk. Just like there is a difference between Freedom of Speech and Hate Speech, there is a difference between Personal Liberty and Negligence.

Millions of people are suffering right now from fear, illness, and poverty. We all want to get back to work, including me. I’m one of the lucky ones who can work from home, but as a teacher, I would much rather be with my students at school where I can help them cope with the impact of this pandemic. If we open our doors and all return to work and school too quickly, more people will die. We must wait. And wait…

I don’t know what the future will bring for myself, my students, or my daughter. All I know is right now, today, I can take care of my child, myself and my community by staying home, washing my hands, wearing a mask and gloves when I must go to the store and waiting. That is all any of us can do.

Posted on in health, life, medical

The Sickness

Rhia is slowly understanding that something very strange is happening in the world right now. She calls it “The Sickness.”

“The library is still closed? It’s been closed for weeks!” she says, putting her library books back on the shelf where she keeps them separate from her own books.

“I know, but there are a lot of people sick right now, so the library needs to stay closed,” I say.

“First everybody is sick at your work, and now there is a sickness at the library… That’s silly!”

“You’re right. It is.”

“Why is everybody so sick?”

“There’s a bad germ that can make people sick. That’s why we’re staying home so we don’t get sick too. And if we stay home it helps other people not get sick.”

Rhia is quite for a moment, then she says, “I remember when I was little there was a sickness at my school and we all had to get a shot. I didn’t like that.”

Many years ago there was a meningitis outbreak at Rhia’s Elementary school. “I remember, too.”

“I didn’t like getting a shot. Do they have a shot for the sickness now?”

“No. That’s part of the problem. If there was a shot, then people wouldn’t get so sick.”

“Hmmm…” Then she asks, sounding worried, “Do people always get sick in San Francisco?”

“No. This is just a weird sickness happening now, but not always.”

“When will people stop getting sick?”

“I don’t know. Maybe in the summer.”

“It doesn’t make any sense! Why is the sickness now?”

“No one knows, Sweetie. We just have to wait until it ends.”

“I think that’s just silly!”

“I agree.”

She thinks again, then says, “Can we go to the library next week?”

I don’t know how to tell her Disneyland is closed too.