Category: special needs

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 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, 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 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 ASL, day program, deaf, special needs, strength

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.

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 ASL, caregiving, deaf, disabilities, Disney, life, parenting, special needs, strength

The Day Rhia Declared She Can’t be a Princess Anymore.

I found Rhia crying in her room.

“Sweetie,” I said, taking her in my arms. “What’s wrong?”

“I can’t be a princess anymore,” she said.

“Of course you’re a princess. Why do you think you’re not?”

“Because I can’t walk anymore and princesses don’t have ataxia! Have you ever seen a princess with ataxia? No!” She buried her face in my chest and cried harder.

I wanted to cry, too. Damnit, why does this have to be so hard for her? Why does she have to keep losing ground a little bit every day? If she has to be blind and deaf, why does she have to notice how all her friends are grown up and living there own lives while she gets weaker and has to stay home? What the hell do I say to her?

Rhia is passionate about Disney, especially the princesses. Cinderella is a personal friend and Rapunzel was at her recent birthday party. She wrote them all a letter and they wrote back. When we go to Disneyland, all she wants to do is talk to the princesses.

“They remember me!” she declares. And a few do. Over the years, we’ve met the same actresses who surprisingly remember Rhia out of the thousands of kids they see each day. There’s just something magical about Rhia, something that draws people to her. Plus, she has a gorgeous wheelchair with flower-print wheel rims. Rhia plays with her princess dolls every day and talks to them as if they are alive; her imaginary friends are her closest friends.

But on this day, those imaginary friends failed her.

“Listen to me,” I said, urging her to look up at me; she has to look at me to see me sign. “You are a princess now and always. Cinderella herself said you are a real princess and you have the certificate to prove it!”

“But that was before…”

“No. Once a princess, always a princess.”

“But I can’t walk any more.”

“So what? Cinderella didn’t say you were a princess because you can walk. She said you’re a princess because you’re kind and smart and funny. You care about people and are a good friend. You are helpful and creative. And you love to sing.”

Rhia had stopped crying and was listening, but still didn’t look convinced. “But I’ve never seen a princess with ataxia.”

“I know baby, and I’m sorry about that. I’m so sorry everything is really hard for you now. You are a princess because you are strong and try hard. All princesses are strong. You are a princess forever!” I hugged her tighter.

She sighed, turned away from me, and picked up her Ariel doll. I kissed her head and left her to think about what I had said. I overheard her ask her doll, “Do you think I’m a princess?”

I prayed somehow that doll said yes.

Posted on in ASL, deaf, disabilities, life, special needs

How deaf is she?

A friend sent me a link to a video called “Are You Deaf Enough, by Jessica Killgren-Fozard, which was posted by Ai-Media. Here is the link to the video:

https://www.facebook.com/aimediaAUS/videos/10155585533079220/

In the video, Ms. Kellgren-Fozard talks about how it feels when people ask her how deaf she is. How much can she hear? Why doesn’t she “sound deaf”? The questions and her response reminded me of how I feel when people ask about my daughter Rhia.

How much can she hear? What does she hear? Can she hear me at all? When did she lose her hearing? She looks like she hears me, are you sure she can’t hear my voice? Why doesn’t she wear hearing aids? Have you considered cochlear implants? 

The answers are: I don’t know. I don’t live in Rhia’s skin and I don’t have her ears. There is no way I can know what she does and doesn’t hear. All I can do is guess, just as the doctors and the audiologist have guessed. We think she hears sound, but it’s garbled, like trying to understand a foreign language under water. She doesn’t hear high pitched sounds. How do I know? Because when the smoke detectors go off she doesn’t even flinch. She looks like she hears you because she used to hear so understands that you are speaking to her and she is clever enough to make excellent guesses about what you are probably saying. But that too is my guess. Maybe she can hear you sometimes, but it fades in and out. She tried hearing aids but hated them. A cochlear requires major surgery and she hates that too, so she learned sign language. Any other questions?

The questions are all about what she can and can’t do. People listen to the answers, nod, attempt to communicate with her for about a minute, then move on. Once they have proven to themselves that Rhia can’t hear, they stop trying to talk to her.

Occasionally I am asked, “How should I talk to her?” What a wonderful question! Instead of wanting to know how Rhia adapts, a person will ask how they can adapt to her. I see people try to communicate with her and include her in an activity. It’s not easy and I don’t blame people when they eventually give up. But the ones who really try to connect with Rhia are rewarded with her bright smile. If they know even a little sign language, Rhia beams and says “They know my language!” All it takes is getting close, making sure she’s looking at you and then signing, “It’s good to see you.”

I know when people ask me about Rhia’s hearing they aren’t trying to be rude or cruel; they really want to understand and learn. And most of the time I don’t mind answering. But if you’re going to ask the hard questions, be sure to follow up with a question about communication. How does Rhia like to be included? What is her favorite thing to do? Can you help me sign a question? Does Rhia understand what is happening? How can I help her understand? Would Rhia like a cookie? How do I sign “cookie”?

The more you focus on who Rhia is and learn how to communicate with her, the more you will discover she is a vibrant, funny, kind hearted young woman who loves to sing and go for walks on sunny days. She’s also deaf.

Posted on in disabilities, mitochondrial disease, special needs, strength

Looking for Hope at the UMDF Conference

562px-Diagram_of_a_human_mitochondrion_svg20copy

(image from UMDF.org)

The United Mitochondrial Disease Foundation conference was in Alexandria VA., next door to Washington DC. Last year it was in Seattle and I brought Rhia to meet other people with “Mito”. This year, I went on my own. I was scheduled to give two talks about vision loss and spend a day advocating for health care in Washington DC. There was no way I could be Rhia’s caregiver and interpreter and teach and advocate. And last time I missed most of the talks about mitochondrial disease because I was busy helping Rhia meet other people. This time I was going for me.

I wanted to learn and meet other family members. Rhia has been declining both physically and mentally this year and I wanted to see if there was any new information to help her.

There wasn’t.

Without a specific diagnosis of a specific mitochondrial disease, there is very little anyone can do.

A lot of people with Mitochondrial disease know exactly what type they have, down to the specific genes affected. Leigh’s disease, PDCD/PDH, MELAS, Luft Disease, and 40 other types of Mitochondrial disease have been identified. There isn’t a cure, but there are treatments to help with symptoms and a frame work for what to expect. People at the conference tend to get together into “mito” groups, bonding over their diagnosis and outcomes, comparing doctors and treatments, and sharing ideas about coping.

But without a diagnosis, who do you bond with? You spend time with other people who are just as lost as you and who also have no idea what to expect or who to turn to. We are a mystery. We gather with other mysteries and quickly run out of things to discuss. We hear the latest study on possible treatments for a identified mitochondrial diseases and wonder how many years it will take for the experts to figure out what we have. Which gene, or multiple genes, are affected? How long do we have to live? I met parents just as scared and hopeful as I, but when they asked how my daughter was doing I was honest.

“She’s in a decline.”

They looked at me with sympathy, but quickly moved away. They didn’t come there to hear sad stories, they came to the conference looking for hope. So did I, but unfortunately I didn’t find it.

Instead I focused on the two talks I was giving at the conference, one to people with vision loss and the other to the larger assembly of attendees. If I couldn’t find hope for myself or my daughter, maybe I could help others find it for their own loved ones.

I’ll post about my experience as a speaker next time.

 

Posted on in aging, disabilities, family, happiness, life, mitochondrial disease, parenting, special needs, strength

All grown up

The day I feared and hoped for came: Rhia graduated from school. When she turned 22 in May, she officially “aged-out” of her school based programs. She is now an adult.

Her school had a small ceremony for the three students who were also moving on to adult based services. But first, every student in the program got an award. One was for “Best Dancer.” Another was “Kindest.” A tall, shy boy was given an award for being the “Most Helpful.” And then it was Rhia’s turn. She stood up on her wobbly, colt legs and walked to the front of the room where she was given her Graduation Certificate and her award. Her’s said, “Most Likely to Speak Her Mind.” Everyone cheered.

They know my daughter well.

When Rhia was 5, she got in trouble for something (I don’t remember why). Instead of backing down, my tiny, elfin child put her hands on her hips and glared up at me with fierce eyes. “You can’t talk to me like that!” she declared. Fighting laughter, I sent her to her room. I was so proud of her and prayed that nothing would break that powerful spirit.

17 years later, nothing has… not multiple doctor’s appointments, losing her hearing, worsening eyesight, three hospital stays, deteriorating strength, ataxia, and anxiety. She will tell you exactly what she thinks and will fight hard if she thinks you’re wrong. Brutally honest, she is also extremely kind. She’ll tell you the truth, but be the first with a hug if she realizes she’s hurt you. She’s never intentionally cruel and fights for others as hard as she fights for herself. I wish I had been that strong when I was her age; instead I allowed others to walk all over me. I didn’t believe I mattered, but Rhia knows that she does.

I’m afraid. She’s not. But she doesn’t understand how complicated services for adults with disabilities can be. I see road blocks, paperwork, questions, and meetings. I’m afraid her world will get smaller now that she doesn’t have an ASL interpreter. Will we find one? Can anyone or anything replace the incredible support she’s gotten in school? How will I manage to piece together anything close to that?

Rhia is happy. Her greatest joy is she can now wear all the Disney t-shirts she wasn’t allowed to wear in school.

“I can wear anything I want!” she said, tossing school shirts on the floor. “I’m all grown up!”

“Yep,” I said, “You can wear Disney everyday.”

“Hooray!” More shirts flew into the air. I quietly scooped up the best ones to keep for the times she needs to wear something nicer than a Princess t-shirt. That will be another battle on a different day.

I need to have faith in my daughter. A deaf-blind young woman who wins an award because she always speaks her mind is no one to underestimate. And I’ve always got her back. We’ll find a way.