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.

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

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.

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.

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?

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.

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.

Survival Skills from Rhia

Rhia and I are sitting together watching Frozen in the middle of a rainy Sunday afternoon. We’re safe and healthy, blessed with a warm house to shelter in and plenty of food. During this time of so much sickness, what more do we really need? The interesting thing is that not much has changed in our daily lives. Before Covid19, Rhia and I lived a quiet life. We rarely went out to eat or visit friends. Our life pretty much revolved around trips to the library and to Starbucks for a hot chocolate. Occasionally people came over, but that too was rare. About once a month I had caregiving coverage so I could go out with friends. So our ordinary life is about the same, except for the library being closed.

Isolation is nothing new to us. Neither is fear. Rhia and I have lived with the uncertainty of an undiagnosed disease since she was born. Every time Rhia gets a cold or a high fever I wonder if this will be the one that puts her back in the hospital. She almost died once after a flu and then a few years later she was hospitalized with pneumonia. The slow decline of her physical health coupled with the lack of a diagnosis means we have no idea how long she will live. One more year? 5? 10? Her doctor’s thought she’d never reach age 20 but she’s almost 25. Every prediction has been wrong. Living with a see-saw of hope and fear makes us prepared for the uncertainty of this pandemic.

This isn’t some kind of “welcome to my world” post. Not at all! I am heartbroken that millions of people in the world are facing illness and death and the constant uncertainty about tomorrow. I know what it’s like to be broke and unable to work because you have to care for loved ones, and I wish no one had to deal with that. I am grieving for everyone and praying for a miracle, just like everyone else.

But what I’ve realized during this Shelter In Place is that Rhia has taught me incredible skills about survival. She has taught me how to live right now, enjoy all of the small moments of life, and feel gratitude. She has taught me it is okay to feel afraid, sad, or angry, and that you should give yourself time to grieve when you need to. She’s taught me how to get up in the morning when I really didn’t want to. She taught me how to walk with fear and not let it overpower me.

I’ve also learned very practical skills, like stock up on essentials before you need them. I never knew when Rhia might get sick or just too tired to go to the store, so I always have supplies (including TP) to get us through a couple of weeks. A few times I’ve needed something urgently so I called a friend or Instacart. When we first moved here I set up our Earthquake kit, which means I already have plenty of water and batteries. I always fill up the gas at a half tank and carry tools to repair her wheelchair everywhere we go. I also have managed to scrimp and save a couple of months of survival money. When you live with constant uncertainty you learn to be ready.

There have been times when I’ve resented Rhia’s disability, especially lately. I long for my own life, one that doesn’t include constant interruptions of sleep. I want to travel, but who will care for Rhia? I resent her dads who get to live their own lives and friends who go to all those places I long to see. But right now, I feel blessed. I am scared and tired and stressed out, but blessed. Rhia and I are safe and we have everything we need to get through the pandemic. We are both healthy and I pray we stay that way. Travel and going out aren’t important. What matters is love and caring for each other. I will care for Rhia for as long as she needs me, and she cares for me in a thousand ways that it took a pandemic for me to see.

When the pandemic ends, and it will, I won’t forget what I have learned. I pray none of us do.

Creating a Day Program From Scratch

It has been 6 months since I last wrote in this blog. During that time I’ve worked hard hunting for a program that fits Rhia’s needs. A program that includes activities, friends, art, excursions into the community and people who speak American Sign Language. She was placed on the waiting lists of two different programs that had everything except ASL and she tried out one, but it was a disaster. Then we found an incredible program in San Francisco for people who are Deaf and Developmentally Delayed. However, there was no transportation to get her there. We fought hard and finally the Regional Center agreed to provide it.

At last, she could go to ToolWorks!

Not so fast… Just like every program in California, ToolWorks is short staffed and struggling to meet the needs of the people already in their program. As soon as they had staff, Rhia could go!

We waited four months.

Finally, I’d had enough; we decided to hire people and create our own program. I put out an add for caregivers and quickly heard back from several interested people. Out of 10 applicants I interviewed 4. Actually I interviewed 2 because one no-showed and another cancelled. I hired one brilliant woman who met all the qualifications, including basic Sign Language, but she texted me an hour before her shift started, saying she wasn’t coming. After a good cry I ran the add again and thankfully hired a dependable, kind woman who actually shows up and takes great care of Rhia. Unfortunately she doesn’t know sign language.

Fine. We can work with this. With dependable staff Rhia can start finding things to do in the community. She loves the library, so they can go there. She also loves coming to my work, so I pay her to clean toys on Friday afternoons. She also likes being helpful, so she and her caregiver do the grocery shopping on Mondays. They also clean the kitchen every day. It’s a start, but far from what I dreamed for her, and I suspect far from all she’d like to do.

Rhia wants to be a teacher and work with young children. She loves creativity and making art. She enjoys going out to lunch and window shopping with friends. And she loves talking to people. Unfortunately, no one can really have a good chat with her except me.

Rhia doesn’t have close friends; she has caregivers.

She isn’t alone; so many disabled young adults are isolated from their peers, which is why a staffed Day Program can be great. How wonderful to spend the day with other people just like you, young adults who need help in the bathroom and use a wheelchair, have trouble communicating and can’t even feed themselves without help. Outside of a staffed program it’s just you and your caregiver.

The caregiver has worked a month, so they are still getting to know each other. They go on short outings and run errands for Mom. Rhia is slowly warming up to the caregiver as the caregiver learns to communicate with her. This gives me hope that in time they’ll be able to do more together and Rhia will make connections with others in her community. We’ll all figure out what activities are available and what she will enjoy. It just takes time.

Time… It’s been over a year and Rhia and I are still trying to find a way for her to have a life filled with fun and friends.

I’m so sorry, Rhia. I thought moving to San Mateo would make life easier for you.

Where have all the Day Programs in California gone?

Once upon a time there were wonderful places called Day Programs in California. These programs provided social opportunities, vocational training, emotional support and entertainment for thousands of Californians with disabilities. Everyone found a place to belong, no matter the disability or impairment.

Those days are long gone… or maybe they never existed. Maybe great day programs have always been mythical, like unicorns and Starbucks drinks that won’t make you fat. But what I’ve heard from people who work in programs and the State agencies that support them is that there once were a lot of really good opportunities for people with disabilities in California.

Used to be… that’s the key phrase. Thanks to budget cuts and astronomical rents, day programs have had to shut-down. One after another has collapsed under the growing cost of rent, the need to pay a living wage and the yearly decrease of funding from the State. Most programs are supported by the Regional Center, a State agency that vendors with local people to provide programs and activities. The Regional Center can only pay what the State allows, but the State doesn’t provide much more than minimum wage, a rate that is impossible to live on. Programs rely on grants and other private supports to get by. Those funding streams have also disappeared, which is weird because it’s not like there isn’t a ton of money in California. Programs also need a space to provide the services, but rents have pushed “site based programs” into “community based programs”, which are not always the best option for people with disabilities. Even the community based programs are financially challenged because they then have to provide transportation and staff to support their clients. They can only pay a little more than minimum wage, which no one can live on, so staff turnover is high. Eventually those community based programs are forced to shut down, too.

Every year the State budget cuts program funding for people with disabilities and more people are forced to stay home, which strains the families who care for them. How are they supposed to pay their own rent when they miss work providing care to a loved one with a disability?

There once was a State Hospital Program which cared for thousands of people with Developmental Disabilities. And yes, I know the Hospital system was awful and people were mistreated and hidden away from the larger society. Happily, most of those State Hospitals have shut down and people with disabilities returned to their families or placed into smaller group homes. But here’s my question: where did all that money go when the State shut down the State Hospital System? And if day programs and care homes are being forced to close, where exactly are those people who were once in State Hospitals going?

My daughter isn’t the only person being impacted by the broken Regional Center system. I see good people in that system every day fighting for their clients, only having to tell those same clients there’s nothing they can do. Clients, family members, caregivers, and social workers are all struggling with the lack of funding to support day programs and group homes. The State of California needs to provide proper funding again. I heard they used, but that was a long time ago in a land far, far away…

Maybe that’s where unicorns went as well.