Category: parenting

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 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 caregiving, disabilities, mitochondrial disease, parenting

Caregiver or Mom?

Caregiver or mom? The two are blended into one role when our children are small. As they grow, we let go of small bits of caregiving. They learn to drink from a cup, use a spoon, pull off their own shirt and shoes and brush their own teeth. They become potty trained. They go to school and learn to write their own name. They get their own snack and in time learn to feed themselves. Perhaps they cook dinner for the whole family once a week. If they have smart parents, they learn to wash their own clothes. Slowly our children grow and become independent and eventually are able to live on their own. They don’t need us to be a caregiver, but they will always need us to be a mom.

This is what I’ve seen happen in other families. It isn’t what I’ve experienced.

My daughter will be 23 tomorrow but has less skills than she did when she was 10. Rather than gaining independence, she has become more dependent. Her illness has slowly taken away her motor skills and her hearing and now her vision is declining. Her cognitive abilities are reduced and something as simple as choosing which shirt to wear becomes an enormous task. So I help. I help her dress. Help her brush her teeth. Help her eat and bathe and use the toilet. We seem to be living in reverse.

The tricky part is balancing her need for a caregiver with my need to be mom. Her need for constant support with her desire for independence. My need to keep her safe with my hunger for freedom. We’re both trying to figure this out. When am I the caregiver? When I am mom? When do I make decisions that support her life and when do I make decisions to support my own?

A caregiver can be more methodical; I set my heart aside and take care of her daily needs. It doesn’t matter how frightened I am or tired, it only matters that she get enough nutrition and stay hydrated. I can manage doctor appointments and therapies and other caregivers that come to relieve me. Caregivers don’t need much sleep. Moms do.

This mom is frightened and angry and sad. This mom is sick and tired of the call in the night from a daughter who can’t get out of bed for a drink of water anymore. But this mom is also grateful that the call in the night still happens. My daughter, my beautiful, funny, kind-hearted daughter is turning 23 tomorrow after every doctor said she’d never see 20. We’re planning a party and celebrating the wonder that is Rhia. I am in awe of this child… this young woman… who disrupted my own life with her needs and curiosity. I am honored that of all the potential moms in the world, this spark of wonder chose me.

We still haven’t figured out the balance, and maybe we can’t. Balancing the heart with the mind and independence with dependence might be impossible. Sometimes Rhia is as sick of me as I am of the constant caregiving. She’d love to walk out the front door and find her own life with her own friends in another state! I’d love to help her pack.

But here we are, our lives entangled by Mitochondrial Disease. I’ll keep trying to learn when to be mom and when to step back and be the caregiver. A caregivers primary role is to support independence. Maybe that’s a mom’s role too?

Posted on in caregiving, friends, life, parenting

How can I help?

I am blessed with great friends who want to help. They send me notes on bad days and funny messages on Facebook. They text me a cyber hug. “How can I help?” they ask. They know how hard it can be to be a full time caregiver of an adult child. “Please, let me know what I can do.” But the answer isn’t that simple.

How can they help me with my daughter’s emotional distress as she loses her ability to walk?

How can they help me understand her on the days her speech is incomprehensible?

How can they help me interpret the world so she understands what is happening?

How can they help me when she has a meltdown in the grocery store and we have to leave?

How can they help me manage her day to maximize her energy and physical abilities, which change constantly?

How can they help me when she’s so lonely she cries because she misses her cousins?

How can they help me when I’m exhausted and in pain and need to rest my worn out body but she needs help in the middle of the night with a dizzy spell?

The problem isn’t the day to day stuff, like bills and errands. Sure, it would be great to have extra help putting gas in the car and cooking dinner. But those are the ordinary things that actually help me cope. Ordinary things, like laundry and gardening, cleaning the floor, organizing the pantry, and dusting help me stay grounded. The extraordinary things, like dealing with Social Security and Medi-Cal and my daughter’s inability to dress herself anymore, are the things that overwhelm me. But those are the things others can’t help me with.

So how do I answer “How can I help?” I do need help, but I don’t know how to specify  any more than I can figure out how to stop Rhia’s tremors. But if you have an idea, let me know.

Because right now, I’m emotionally overwhelmed supporting my daughter as she loses more physical and mental skills. I can’t figure out how to help myself.

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.

 

 

 

 

 

Posted on in caregiving, disabilities, life, mitochondrial disease, parenting, special needs

5 years and counting

Rhia almost died five years ago on Easter. After a week in the hospital she recovered from what the doctors called metabolic distress. She left weak, but alive. And she had an actual diagnosis for the first time: mitochondrial disease. The doctor didn’t know which type of mito she had, but all the symptoms pointed to some kind of illness that starved her cells of fuel. Slowly, over many years, her cells would starve to death and she herself would die.

They gave her five more years.

That was five years ago.

I spent five years preparing myself for her inevitable death.  Five more Christmas. Five more trips to Disneyland. Five more visits to New Orleans to see family. And then one day she would stop breathing, and my lovely girl would be gone.

But she’s still here, happy and thriving and very much alive. Her ataxia is worse and so is her vision. She can barely walk, even with her walker. Managing her fatigue is top priority. And she’s lost ground cognitively. But despite all predictions, she is still here. She is a friendly, stubborn, kind-hearted, and curious young woman who deals every day with her disability. It frustrates her sometimes but she never gives up. Every time she walks into the doctor’s office on her wobbly legs, it is another victory.

I was ready to say goodbye. I wasn’t ready to take care of an adult with severe disabilities. Soon she will transition into an adult day program when she ages out of the school system at age 22. That is next month!

22. No one believed she would see age 22. Not even me.

On Tuesday we go back to Stanford for her annual check-up with the geneticist and neurologist, They measure her body and track her decline; there is always a decline. And they always smile when they see her. I see the unspoken “how are you still here?” Rhia is impressive, a mystery that has puzzled her geneticist for 10 years. First he couldn’t figure out what was causing her symptoms, now he can’t figure out how she’s still alive. But he seems thrilled to see she still is.

I know I will outlive my child, but no one can tell me by how long. She could collapse tomorrow, or next month. Every time she gets sick I feel the tight panic in my chest. Is this the illness that finally saps her strength? She recovers and my fear subsides. Until she falls. Will this injury be the one that stops her from walking? She gets back up. She keeps walking. She keeps smiling. There is nothing I can do but watch and enjoy every moment I have with her.

Not to say she’s always a joy to be with. She can be impossible! Stubborn and quick to frustrate, she can yell, hit, kick, and throw things. But she is just as quick to apologize and make amends. She’ll pick you a flower or draw you a picture. When you’re sad, she’s the first with a hug. She tells the most ridiculous, surreal jokes and laughs at her own wit. She sings in the car and the bathtub. And she always makes you feel like you are in the presence of a miracle.

I know we’ll say goodbye one day. But right now, I’m going to watch Snow White for the hundredth time with my fabulous daughter.

 

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

Wanted: The perfect program for a highly social, deaf-blind, medically fragile, young woman.

Last week, I attended my daughter’s very last IEP meeting. Rhia turns 22 in May, which means she will no longer qualify for school based services. Instead, she will be a full fledged, 100% adult, with all the challenges and opportunities that provides. I sat beside her at the the meeting, surrounded by people who have been a part of her life since elementary school. Her current teacher used to be her aid in the 4th grade. Now he led the meeting that would transition her into adulthood.

Fighting back tears, I stated my concerns. Who will be her Sign Language interpreter? How will she continue to learn ASL? Which program will provide the most flexibility while still providing social opportunity so she can make friends? How will we fight the isolation that comes when a person is deaf-blind and uses a wheelchair to travel?

No one knew the answers. Everyone was worried and everyone tried hard to come up with solutions. But what I really wanted was someone to take charge with their magic wand and create the perfect program for my daughter. Unfortunately, no one had a wand.

It’s not that I didn’t know this day would come; her IEP team and I have been discussing it since the 8th grade. Transition is a big deal so it takes years to plan. The problem is that my daughter is medically fragile and has serious communication challenges. We live in a tiny town with limited opportunities. We really need to move to Berkeley or Santa Rosa, but who can afford the rent? So here we are, Smallville California, hoping the perfect program for my Disney loving, shy, cheerful daughter will appear.

Rhia keeps asking me what will happen when school ends. I tell her she’ll go into a different program for grown-ups. She’ll make new friends and maybe take classes at college again. She scrunches up her brows and looks at me sideways, not sure if I’m telling the truth. But I am; I’m telling her what I hope will happen. When I ask her what she wants she says she doesn’t know, but she’d like to move to “LA” so we can go to Disneyland everyday. Darling, if I could, I would, but I can only afford to live in a tiny town in NorCal where the adult programs are geared toward work and very few people know ASL.

I really need Godmother’s wand!

Posted on in caregiving, disabilities, events, health, mitochondrial disease, parenting

Not the only Mito Kid in the world

IMG_3939

My daughter Rhia and I spent the last four days in Seattle at the Mitochondrial Disease Medical Conference. Hundreds of people with mitochondrial disease, their family, parents, doctors and researchers gathered at the SeaTac Hilton Double Tree Hotel to discuss potential treatments, research breakthrough’s and symptom management. The conference travels from the East to the West coast. This year it was only a two hour flight from our home, so my daughter and I decided to go.

The main goal for us was to meet other young people and kids with the disease. Rhia was convinced she was the only person in the world with Mitochondrial disease. There is no one else like her who uses a wheelchair because her legs are “too lazy” to walk (her words). No one else is deaf-blind and no one else has hands that shake.

Rhia quickly learned she isn’t the only girl on the planet. At the conference, she met a girl who uses a wheelchair because she too gets too tired to walk far and tends to shake when fatigued. We met a young man who has the same doctor as Rhia and has dealt with all the same tests and procedures. We met a young woman with thick glasses who struggles with seizures while trying to go to college. A young man who used to play sports but now spends more time in bed than on the field. We met teenagers and young adults from all over the US who battle mitochondrial disease every day just to have some kind of self-actualized life.

No one else is deaf-blind, though. I spent most of my time interpreting sign language so Rhia could understand what people were saying. It was a challenge to help Rhia become included in the group. They could all talk about their frustrations and joys, and they shared their experiences freely, supporting each other as best they could. As a deaf-bind person, Rhia is a rarity within a rare group. But everyone worked hard to include Rhia in the group. Whether she could understand their spoken words or not, she was still one of them. In time, Rhia warmed up and made two connections which could develop into friendships. Unfortunately they  live in different states, but if they can figure out how to stay in touch, the three could really help each other not feel so isolated.

Unfortunately I wasn’t able to attend many of the workshops on mitochondrial disease treatment and management, so I missed a lot of the information. But Rhia and I achieved our goal: connecting to other people with “mito” and understanding Rhia is not all alone. At times it was hard for me to step back from being mom and just facilitate communication. The stories people shared about their anger and grief coping with mitochondrial disease were heart wrenching. These kids should be enjoying high school and planning for college, not managing symptoms of a degenerative disease. Rhia said she hated her “lazy legs” and wished she could walk. She was tired of hurting herself all the time. The others nodded, understanding her anger. Reminding myself that I was here to support Rhia’s communication needs, I kept my tears in check.

At the end of the conference we were both exhausted and ready to be home. Two days later I’m still trying to regain my energy. The trip was challenging physically and emotionally, but worth it. We’ll definitely go again.

Thank you UMDF for providing this community and helping us cope with Mito. It’s not easy, but together, we can do it.

Posted on in family, holidays, parenting

For the UnMothered Children

  Mother’s Day. Bah! Humbug!

Mother’s Day raises old ghosts.  Those childhood ghosts crash into my bedroom and make me feel like I’m eight years old again and all alone in the dark. It doesn’t matter I am actually 49 and able to take care of myself. The specter of abandonment wanders out of my closet and won’t leave me alone.

There’s no need to explain or share details about my childhood. Those who experienced something similar know how it feels to grow up lost. My childhood doesn’t come close to what other’s coped with, but it left me scarred regardless. It left me with a deep hunger nothing can satisfy. I long for safety, security, and the knowledge my mom will be there no matter what. I accept it wasn’t her fault, but that can’t change the feeling. I’m a mom now, and my daughter has grownup knowing she is completely, unconditionally loved. But my sadness won’t go away.

The sadness gets stronger every Mother’s Day. But This year will be different. Instead of mourning what I never had, I will celebrate what I did. 

I mothered myself.

I grew up troubled but still believed in myself. I was afraid, but kept trying. I learned and grew stronger and trusted despite how many times I was shown I shouldn’t. I taught myself that I matter. I found ways to feel more secure. I made a million mistakes but learned from every one. I never gave up on myself.

Which is what we want from our moms, right?

So this is for all the motherless children. For all who mothered themselves and fell down and kept trying and never gave up. For the ones who think no one will love them. The ones who became parents and figured out how to raise those children. 

Buy yourself some flowers. You are wonderful.

 Happy Mother’s Day to us all.