Category: disabilities

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 caregiving, disabilities, health, life, mitochondrial disease, special needs, strength

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.

Posted on in caregiving, day program, deaf, disabilities, life

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.

Posted on in day program, disabilities, life, opinion, special needs

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.

Posted on in disabilities, health, holidays, life, medical, mitochondrial disease, strength

Rhia almost left 8 years ago

Rhia drinking a hot chocolate at Starbucks, age 20

8 years ago, Rhia spent Easter in the hospital, hooked up to IV’s and undergoing too many tests, because she had almost died. Two weeks earlier she’d had the flu, but even when the virus ran its course and the fever vanished, her body didn’t recover. She slept all the time, could barely speak, and her eyes became blank and unseeing. Then she started choking on water. We rushed her to Stanford Children’s Hospital and they admitted her for Metabolic Distress.

It took a couple of days to stabilize her and a full week before she could go home. It was during that time we got an official diagnosis for the cause of her disabilities: Mitochondrial Disease. Her doctor’s had suspected it was “Mito” but until she was hospitalized they weren’t certain. They still weren’t; the tests came back negative but all the symptoms pointed to Mito. The possible causes of her ataxia and degenerative neurological symptoms had been narrowed to the spectrum of Mitochondrial Disease.

But what did that actually mean for Rhia and her health? Would she recover from her medical crisis?

They let her go home when she could swallow water and other liquids again. She still couldn’t eat food, so she was referred to a Speech Therapist to relearn how to swallow again. If she didn’t recover, she would need a feeding tube. Time would tell…

Later, we were told if she reached the age of 20 it would be a miracle. She was 16.

8 years have passed and Rhia is still here. She turns 24 next month, and thankfully she did learn to eat food again. And she’s still walking, although I swear she’s walking because of tenacity, not strength and coordination. She never fully recovered her energy and strength from 8 years ago, but she and I learned to manage her new “normal” and find ways to cope with her increased fatigue. Some days are great; she sings and laughs and loves exploring her new city. Other days she can hardly hold a crayon in her hand. She’ll sit and stare into space as if all her energy is needed to stay upright. It can switch back and forth every hour.

We roll with it because this is a part of Rhia. No matter what, she keeps smiling and I keep trying. Both of us get frustrated sometimes, but we both find a reason to laugh. It’s impossible to stay sad for long around Rhia.

Rhia smiling, wearing glasses, and drawing with a large marker.

How long will she stay here with us? No one knows. Her doctors are amazed and thrilled to see her thriving as well as she is. Who is this remarkable person who keeps surpassing everyone’s expectations? She is my daughter and I am so proud of her.

Thank you for these extra 8 years. I treasure them all. And I will treasure all the years we still have together.

Posted on in deaf, disabilities, family, life, parenting, special needs

Who will interpret?

I helped Rhia pack and then took she and her step-dad to the airport. One of his cousins was getting married, so the whole family was getting together. A big wedding celebration with all the cousins and extended family. Rhia would see her Gran and Gramps and aunts and uncles, first and second cousins and friends of the family. Everyone would be there… except me. I was invited, but between work and grad-school I needed to stay home and study. Plus, who would watch the dog? And really, I am now the “ex-wife.” They are kind people, but do I really need to show up at a family wedding?

This is the first time Rhia has gone on a trip without me and she is not happy! Who will help her communicate? Who knows Sign Language? Who will help her in the bathroom and wash her hair and get her dressed and eat dinner? She wanted details on how EXACTLY Rick would help. “Boys are hard to understand,” she complained. I tried to reassure her, but I too was worried. Since I’m the one who helps her communicate, who will do it if I’m not there?

I was hoping to have her iPad set up with the “Go Talk Now” app ready, but I didn’t have time. Plus, I discovered her iPad doesn’t have enough memory. I need to get her a new iPad, set up the device, learn “Go Talk Now”, program it, and then teach Rhia. I’m sure if I give up sleep I’ll have time to do that. But first I need to work and teach other kids and deal with lesson plans and IEPs for them, then do my homework for my own classes, and study for my math test… but no problem. I’ll master “Go Talk Now” at midnight!

If I don’t have time anymore to help my child, did I make the right decision moving here? If I am no longer available to help her communicate, is moving her closer to her doctors such a great thing? Here’s some great health care, but you won’t understand what’s happening because Mommy’s at work. Sorry kid.

I know it’s good for Rhia dn I to be more autonomous, but mommy-guilt is a big, ugly beast with five heads and poisonous teeth. The minute you think you’ve got it under control, two heads will wip around your shoulder and bite your jugular vein.

After I drove home from the airport, I pulled weeds in my yard and cried. I cried for my daughter who will try to figure out what’s happening surrounded by people who speak a language she doesn’t understand anymore. I cried for the end of my marriage that forced us to move. I cried because life has changed so much and I am exhausted but have to keep going. I cried because I’m rebuilding my daughter’s and my own life. I cried because I still love my ex-husband and his family, who are no longer mine.

I hope they are still Rhia’s.

Posted on in disabilities, health, health insurance, life, medical

Just because you have MediCal doesn’t mean you can have a doctor

We were told it would take 4 weeks to transfer Rhia’s MediCal from one county to the new one. It took 4 months. A government shut-down slowed the transfer down even more. Plus, there was a huge backlog at the State level from so many people applying for MediCal through the Affordable Care Act. So, four months later, Rhia’s MediCal was approved and we were ready to find a doctor.

Just because you have MediCal doesn’t mean you can have a doctor.

Every clinic I called said they were no longer accepting MediCal patients; they had all reached their quota by February.

Great!

I asked the first two clinics if they were accepting new patients and they said yes. We started the intake process but as soon as I got to the insurance part, the answer was, “Oh… we’re not accepting new MediCal patients.” After that, I started the conversation asking if they were taking MEDI CAL patients. Two more clinics said no.

Finally, the fifth clinic said they were accepting MediCal. And, miracle of miracles they had an appointment open in only 2 weeks! I grabbed it, wrote it down, hung up the phone and burst into tears.

Everything was on hold waiting for a doctor. We needed a doctor to sign the forms so she could start her day-program, but that couldn’t happen until MediCal cleared. While we were waiting I was out hunting for a day program with an opening, so now she’s on two waiting lists. Thankfully one program had an opening in December and they were kind enough to hold the spot for her.

Since December! (Thank you, thank you, thank you…)

Access. The doctors are excellent here, but not everyone has access. How many more openings are there for MediCal patients? Did the clinic that accepted my daughter eventually say no to the people who called afterwards? How many people with disabilities are hunting for a doctor right now?

Posted on in activism, caregiving, disabilities, life, opinion, politics, strength

People with Disabilities Fight Walls Every Day.

San Mateo County is wealthy, beautiful, and filled with opportunities. I believed that bringing Rhia to this prosperous city close to Stanford Medical Center (where she gets her medical care) would be wonderful. Rhia agreed. No more three-hour drives. No more being bored in a tiny town. No more hot summers. We packed our stuff and moved to a new home, filled with hope and excitement.

That was four months ago. We’re still waiting for the opportunities.

The first barrier to greater opportunity for Rhia came from Social Security. Despite the fact we pay three times the rent we did in Ukiah, Rhia’s disability check was reduced by $200.00. Why? Because the Federal Government counts any rent below market rate as income. Therefore, Rhia is getting support in the amount of $300.00. Never mind the fact that the market rate is over $1000 for a bedroom and Rhia only receives $900 to live on. It doesn’t matter that what she receives doesn’t come close to what she needs to survive. The Feds wouldn’t count reduced rent against her if she lived in subsidized housing. Oh, there’s a 5-year waiting list for subsidized housing? Well, it’s a good thing Rhia has somewhere to live! She could always be homeless and get the full amount needed to survive. It’s up to her.

Thanks a lot Feds. (insert middle finger here).

And then the Federal Government screwed Rhia again; there was a paperwork problem transferring her MediCare from one county to the new county. The process was already slowed down due to the holidays, and then to make it more fun the so-called President shut the government down. There is no one to answer the phone or anyone to figure out which black hole Rhia’s paperwork is trapped in. So we wait. She needs MediCare coverage to go to the doctor and she has to go to the doctor for a physical exam before she can start a day-program. But who cares? The President and Congress are bickering over a stupid wall! Too bad Rhia, you get to wait.

Day programs… there are some incredible programs for people with developmental disabilities. But getting into a day program isn’t easy. Waiting lists are months, even years long. I found a great program that is the perfect balance of center-based and employment. They provide art and vocational support and there are two other deaf people in the program. The director I spoke to thought maybe February, but now it looks like they won’t have an opening until Summer. Then a newer program opened and they’re happy to hold a spot for Rhia. Unfortunately, they are completely community-based, meaning there isn’t a center where Rhia can rest when she needs to. Plus, no one knows Sign Language. But the people are kind and Rhia is so bored and lonely we’re willing to give it a try.

Oh, wait, Rhia’s MediCare hasn’t transferred yet. Sorry kid, you have to wait until the Feds get their act together and reopen the government. Hope you like sitting around the house coloring all day. And it’s a good thing your mom is in Grad School so she can get a student loan to pay for childcare out of pocket.

I am broke, Rhia is lonely, and the government shutdown drags on. I’ve done everything I can, called every number, talked to every human I could reach, and have hit a massive bureaucratic brick wall.

A wall has been built, just not the one Trump wanted.

This is why people with disabilities tend to stay where they are, regardless of whether or not the services in their area are decent, or even accessible. This is why there are so many disabled people living on the street, or in sub-standard housing. Rhia has me to fight for her, but how many people have you seen who don’t have anyone? How many times can you be defeated before you just give up?

I will never give up on my daughter, but we sure could use a break.

Posted on in caregiving, disabilities, life, strength

Trust and a lot of Hard Work

I knew transferring Rhia’s services would be hard, but I had no idea just how close to impossible it would be. The net that was supposed to catch us after we jumped toward a better life is ripped, worn out, and stretched to the point of disintegrating.

San Mateo County services are excellent, but getting to them is another battle.

I haven’t had time to write. My days are filled with work, caregiving, unpacking, and school work. I get Rhia ready for her day, then work a full-time job, rush home to take care of Rhia again and try to get homework done. I’m failing braille simply because I don’t have enough time or mental focus to memorize all those little dots. But if I fail, I’ll get kicked out of school, which means I’ll lose my job, which means I lose our home, which means we can’t be in San Mateo County…

Stop! Don’t go there. Take it a day at a time… no, make that an hour at a time. And trust.

Trust what? Who? Myself? I actually thought I could move to the most expensive county in California and it would all just magically work out. I’m an idiot.

However… every cell in my bones tells me I’ve made the right decision. Rhia is happy here; she now lives in “San Francisco” where she is closer to her doctors and the weather is better. No more long drives. No more 100 degree days. For her, I’ll keep fighting.

The Regional Center is finally helping her access a day program. There are two good possibilities with great opportunities for Rhia. While we wait, I’ve hired a caregiver to help while I’m at work. Finding her was pure luck and I’m extremely grateful, but I hope the Regional Center hurries up because I’m running out of cash to pay for a caregiver.

…if I can’t pay the caregiver then I can’t work and if I can’t work I lose my job and then I lose our home and then we’ll have to leave San Mateo County…

Stop thinking like that! Deep breath… there’s nothing to do but keep going forward. Trust.

Trust that I made the right decision. Trust that this is the best place for both me and Rhia. Trust that people are kind and there is help out there. Trust that I am smart enough to pass braille. Trust that I have enough money saved to get us through this transition time. Trust that I am not really alone, even if I am a single mom again.