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.

Who Knew Starting Pre-School Would Be Easier Than Starting a Day Program?

When Rhia was 3 and began pre-school, she happily took her teacher’s hand and waved to me. “Bye Mama!” She then turned away and tottered off to her new class. I was stunned. Where were the tears? The clinging, wailing, begging me not to go? Everyone had prepared me to be strong and walk away from my crying child. Instead, I was the one crying as I waved. “Bye-bye Baby.”

Fast forward 21 years. We are standing in the library, meeting the aids and participants of her new day program. For 8 months I have been fighting to get her into a program and at last we are here! I’m excited for her to meeting new people and begin her new life in our new city. Rhia on the other hand…

“I don’t want to be here!” Her cry echoes off the library shelves. Everyone in the once quiet building stares at us.

“But sweetie, this is where you’ll make new friends.”

“No!”

“We talked about this. You’re starting a new program so you’re not stuck in the house all day.”

“I like being home.”

“I know, but you can’t stay home anymore. I have to work…”

“Then I’ll go to work with you.”

“You can’t come every day…”

“Why? I like it there.”

“Rhia, it’s okay to come to my work sometimes, but not all the time.”

“Well I’m not gonna come here.” She hunches her shoulders and looks down, essentially blocking out any further discussion. Arguing with a deaf-girl can be annoying.

I wait… and wait… and wait… then I bend down until she can see me and sign, “Please give it a try.”

Rhia looks up at me and bursts into tear. “But no one knows my language! I can’t understand anybody!”

That is the whole problem in a nutshell, and is why it’s taken 8 months to find any program at all. No one knows American Sign Language. Rhia uses her voice to speak, but needs ASL to understand what people say to her. She is deaf, but there are no programs that provide interpreters. This new program is willing to learn ASL as fast as possible and provide whatever support they can to help Rhia understand, everything from pictures to icons to visual schedules. They are going beyond their limits to create something for her, while recognizing that communication won’t be a quick fix. I bought a new iPad with a communication program all set up for her to use. And I’ve come with her to train staff and provide emotional support to help Rhia with this transition.

But I go back to work next week. It’s time for Rhia to start her program. There’s nothing more I can do. I can only imaging how terrifying it must be to spend your day with strangers who don’t know your language and you can’t understand what is happening. When I leave her at her program on my first day back to work, I suspect we’ll both be crying.

I’ll keep looking for a better fit. In the mean time, this is the best we can do, and I feel guilty as hell.

Dear Universe, please help Rhia

Dear Universe,

Please give Rhia a break. She is stressed and sad and no matter how much I try I am unable to do anything about it.

In just the last 5 days we have run into numerous obstacles. Last Friday, she met her new neurologist. Or so we thought. Instead we talked with a person who probably isn’t the correct type of neurologist for what Rhia needs (who knew there were so many kinds of neurologists?). The doctor was kind, but not the right one. She refilled medication that was lost during the MediCal transfer to this county and made several referrals to other specialists. She was helpful yes… but I was really hoping to get Rhia set up in the adult system.

The next day I went to the pharmacy to get Rhia’s medication and learned that MediCal denied it. This medication can help her body maintain body temperature, something especially important in the summer. But it’s expensive so MediCal is refusing to pay. The pharmacy and doctor are trying to solve the problem and I may need to begin the appeal process. Sorry Rhia, here’s another cold pack.

Then on Tuesday I got a call from the Undiagnosed Disease Network (U.D.N.) to discuss their findings. Both Rhia and I had our entire Genome mapped, a process that looks at every genetic code and variable we have in our bodies. And guess what… they found nothing. Not a single anomaly. Genetically everything looks fine. They still need a genetic sample from her biological dad to compare with Rhia’s, but right now, they can’t figure out what is causing Rhia’s disorder. The U.D.N. is the biggest research organization in the entire world specializing in rare and undiagnosed diseases and they can’t find the cause of Rhia’s degenerative condition. If they can’t figure it out, who can?

Thursday was when she started her new program… well, she was supposed to have started. But when we arrived in the morning we learned that the authorization wasn’t finalized. We had a start date and a green light from her social worker, but the program couldn’t let her start without authorization. Rhia has been crying and angry about starting a program for two weeks! She finally agreed to try it… but now… I doubt I’ll get her to try it again.

Universe, Rhia has had one challenge after another since she moved here in October. First her Social Security was cut, then her MediCal delayed. She’s been on waiting lists for programs. She has now “almost” started two. The first start was due to no communication support and the next one due to a paperwork problem. She is stressed, frustrated and lonely. She needs community and something to do. She is trying so hard to grow up and all she gets is slammed doors in her face. Please dear Universe, if you could just give her a tiny break. Something’s gotta give here, and it can’t be Rhia’s mental health. Or mine.

Signed,

Super angry-frustrated-exhausted-sad Mama Bear.