My Journey to Self-Advocacy With My Communication Disorder

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My earliest memory is of sitting on the basement staircase of our Maryland house churning my sister’s peanut grinder. It was the coolest toy and it made peanut butter! I was 2 and a half years old.

I wish that sweet and vivid memory was the first of a childhood filled with joy, but many of the memories that follow are of fear of getting lost, fear that I couldn’t say my name or where I lived, fear that I would be alone and unable to communicate and anger that no one understood me. I was born with a communication disorder and didn’t speak my first words until I was 4 years old. The doctors told my parents I had a neurological lag, but I never really understood what that meant. I don’t know what my diagnosis would be in today’s world of multiple labels, but I do know the impact these early struggles have had on my life, career and my way of parenting two children with special needs.

Julia when she was a child.
Julia Muggia Ochs when she was a child.

By the time I reached elementary school, I felt my differences. I was an outsider and my school performance was poor. It’s clear to me now I had both an expressive and receptive language disorder that impacted the way I processed and organized information. When my teachers spoke, I felt like they were speaking a different language. Nothing made sense and I basically moved along in school because of social promotion.

Special education in the 1970’s didn’t look anything like it does today, but I did receive speech therapy and worked with a special educator. As I entered my tweens, I remember asking my older sister if I could live with her when we grew up. I had found an evaluation from years earlier that said I wouldn’t catch up to my peers. It was devastating to read, and I started thinking I would never be independent. How would I successfully live on my own? How would I ever have a job like my parents?

Friendships for me were complicated. I had a few close friends in early childhood, but there always seemed to be an imbalance. My friends dominated our interactions, with me following along because I didn’t know how to do it differently. Middle school, a painful transition for many kids, was excruciating for me. Those preteen years were the most difficult to navigate. Small kids can be brutally honest about differences, but they are often accepting — tweens in my experience, not so much.

By the time I reached sixth grade, the differences between my peers and me seemed insurmountable. I became the object of humiliation and systematic bullying. The end result was that I was ostracized by other children. I turned to journal writing and reading.

Upon reflection, I think my immersion into journaling helped propel me forward academically. I learned to process and sequence language and to organize my thoughts and feelings. I felt socially isolated and vulnerable, but for the first time, I had a vehicle for my pain other than screaming or biting one of my siblings. Writing was my outlet and novels became my escape. These were the essential tools I would need to succeed in school, and I emerged middle school inspired and hopeful.

In high school, I was placed into remedial classes but soon realized true boredom. Instead of being lost in class as I was in elementary school, I felt detached from learning because the material wasn’t challenging. High school was a real turning point for me.

Julia Muggia Ochs
Julia.

In my first act of self-advocacy, I asked my guidance counselor to transfer me into accelerated classes. Believing in giving me a chance, he supported my request. In the world of today’s special education, we call that “assuming competence,” meaning educators should give special needs children access to the general curriculum and coursework that some may see as a reach. My counselor assumed my competence and gave me access to a completely different track of learning. That one change altered the trajectory of my future education and the course of my life. I continued on an accelerated track and graduated with a New York State Regents diploma.

I wanted to write about overcoming my communication disorder in my college admissions essay, but my guidance counselor, never perceiving me as disabled, encouraged me to write about my strengths instead. One morning, I walked in on a group of girls crying in the school bathroom. They told me my beloved counselor and advocate had died suddenly. I was heartbroken. He was the first person outside of my family to believe I was smart and capable.

In that moment of grief, I realized my greatest strength was the journey I had travelled with my communication impairment. I wrote my college essay about finding my voice and how my learning differences were my gift. My acceptance letter to Kenyon College applauded my strength in overcoming my challenges and welcomed me to the class of 1990.

Now it’s my turn to pay it forward. I’m working on a media project with a phenomenal group of people to bring acceptance, support and a voice to those impacted by communication disorders.

To learn more about “Late Talkers, Silent Voices” visit their GoFundMe page.

The Mighty is asking the following: What was one moment you received help in an unexpected or unorthodox way related to disability, disease or mental illness? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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When My Daughter’s Epilepsy Diagnosis Turned Out to Be Wrong

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At about 6 months old, my girl started doing something my mom and I thought was odd. It was like she was “hiding” in our shoulders — darting her head down and pulling it back up quickly, but she wasn’t actually capable of understanding that game yet. My mom mentioned in passing, “It isn’t epilepsy, is it?” And then the Google search began.

Hannah Noble's daughter.
Hannah’s daughter, Isabelle.

Within a few minutes, I saw videos that looked similar to what my daughter was doing. I wondered if it was “infantile spasms,” which is a severe form of epilepsy. The parents on Facebook pages for it were incredibly supportive and suggested I go to a hospital right away.

Then a couple of other people suggested that it looked more like atonic head drops. And with another Google search, I suspected that, yes, this was a lot closer to what my daughter was doing. Google is a doctor’s nightmare I realize, but when used properly, it might be a literal lifesaver.

Here’s a video of my daughter moving her head and how quiet yet distinct it was.

Now that I knew what I was looking for, I was able to video episode after episode. It wasn’t hard, since she was potentially doing it hundreds of times each day. I headed off to our doctor to get it looked at. She told me she didn’t think it was anything, but we also made an appointment with a neurologist just in case.

The neurologist appointment wasn’t going to be for another six weeks. Four weeks later after the doctor returned to New Zealand from vacation, I sent an email to the clinic with a video of what was happening to my daughter just in case they needed it.

Not long after — it took hours, not days — I got a phone call saying that the doctor would see my daughter. He’d referred her to be seen as quickly as possible. And a few hours later, I got this email:

“They look like drop attacks (Hannah, this is a kind of seizure). She needs an EEG.”

It felt sort of fast, but I thought this is what probably happens for this kind of thing. But her doctor mentioned that she’d rarely seen kids get in that quickly to neurology at the hospital. I had no idea.

We went in for an electroencephalogram (EEG), and I was a bit confused that they said they got what was needed even though she didn’t have an episode while hooked up.

Two days later, we went in and saw the registrar who was under the neurologist. We talked through the family history and then towards the end of the appointment she hit us with it: Isabelle has epilepsy.

I had gone from feeling like a mom who had been overreacting to normal baby movements to feeling validated and confused. I wanted to stop being “Dr. Mom.”

That night she had her first dose of the medicine. It was supposed to make her sleepy. Over the next week or so, she progressively got worse and worse at sleeping. She had more attacks, so we increased her dose three times. She was now pulling herself to stand up and hitting her head on things. I cried while buying a secondhand head thumper helmet to stop the ever-increasing bruises.

Months after my daughter’s diagnosis, she had an EEG to see what was happening. The neurologist came in the next morning and said, “Well, her brain activity is completely normal.”

No seizures, no abnormal waves when she had these attacks, no anything. It took days to fully understand and weeks to comprehend. I was no longer the mom of a child with epilepsy. I was the mom of an undiagnosed child.

The medication she’d been on wasn’t needed, so we slowly weaned her off over the next month. A month later, we went back to the hospital for the review, and we found out she did have a genetic duplication. It was of unknown significance, so we had no idea what it meant — if anything — in the long run. Thankfully her MRI was “clear.” Her head drops had been reducing, and she was discharged shortly later.

I am the mom of a healthy, happy 2-year-old. She’s active. She’s “advanced.” She’s frustratingly vocal. She’s utterly amazing. Yet this journey is a part of who I am. It’s a part of her, too.

It’s the ride of your life. And even having just written this, I still can’t put it into words.

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

A version of this post first appeared on Nipenda — Life + Love.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

 

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How One Nurse's Act of Kindness Saved My Spirit

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In 2005, I suffered a coma, a ruptured stomach, and underwent a total gastrectomy. When I awoke from my coma, I was told by my doctors that my stomach exploded. I couldn’t eat or drink, and it was not known when, or if, I’d ever be able to again. With the expertise, audacity and innovative thinking of surgeons from seven hospitals, many 19-hour surgery marathons, and multiple shifts of nurses and doctors, I was miraculously reconstructed with the intestines that I had left. Over time, I made slow but steady steps towards recovering my “personhood.” I learned to sit upright again. When my tracheostomy healed, I started to talk. Once my hands were no longer shaky from the medications, I began to write and doodle. With time, patience, resilience and persistence, the “me” I remembered started to come back — the “me” that 26 surgeries could never take away.

By 2012, I felt like I had finally made the “great comeback.”  I had written, starred and directed myself in “Gutless & Grateful,” a one-woman musical about my life. I was happy, healthy and had an ostomy. But everything is better in retrospect. At that time, I felt I was happy and healthy, but I had an ostomy. So I took a risk. I underwent an elective surgery to reverse my ostomy. Unfortunately, this elective surgery turned into three emergency surgeries within eight days, an ileostomy, a nicked bladder, a fistula, and a wound that will never close.

It was so overwhelming and traumatic to try to figure out how to put a bag over this gaping wound — this wound that now functioned as a second ostomy. Then, Tina, a very generous nurse with a truly compassionate heart, visited me at my home. Previously, I had been unwilling to receive any outside input. But after weeks of stuffing towels around my abdomen, I knew I had to come to terms with the idea that this wound needed a big intervention.

This was a very big deal to me. It was my acknowledgement that this surgery, that I had chosen, was truly a setback. And I had no idea how I would make a comeback.

Tina admired my spirit and did everything she could to help me. She dropped off new bags in my mailbox daily, and was determined to help me until we could finally find a solution. She saw the spirit in me that was numbed by this tremendous setback, and she was determined to get me out of the house again. It was hard for me to imagine that just months earlier, I had been singing and dancing in a satin red dress, singing about my “gutless and grateful life.” Tina saw that spark in me and nominated me for a Great Comebacks Award. She had seen my show in 2012, and knew that I was capable of making a comeback once again, even when I couldn’t imagine doing so.

Things did get better. They got better because I was determined to make them better. I applied to college at 25. I booked two theaters to perform “Gutless & Grateful” again — updating the show with the 27th surgery for a little comic relief. I created an online dating profile for the first time, and I met the love of my life, who is now my husband. I made a comeback, and I felt alive once again. Then, one day, while I was at school in Amherst, Rolf Benirschke, the founder of the Great Comebacks Award, called me personally. I was so thrilled, I could hardly speak. This was the first time I was really recognized for what I had been through medically, as a true survivor.

Not for my performance, my mixed media art or what I was doing in the community, I was being recognized for being a resilient, strong and proud ostomate.

group of people posing in front of sign for great comebacks awards
Great Comebacks Award Recipients 2014 with Rolf Benirschke (far right),  including Amy Oestreicher (2nd from the left) and Dr. Joe Salisz (3rd from the left).

Great Comebacks changed my life forever. Being the Eastern Regional Recipient was so much more than being honored for my personal achievements. Through Great Comebacks, I was able to meet other ostomates who were doing wonderful and inspiring things. Call me sheltered or naive, but I didn’t even know there was anyone my age with an ostomy!

I had never known how to talk about my ostomy. I didn’t know what an ostomy was until I had one. Part of me felt like it was “not something you talk about.” Even though I was never told this, I felt there was some kind of stigma, like I should be ashamed. Part of me felt like an outcast, like no one had what I had.

I met a beautiful fashion model, a dancer, a teacher, a nurse, inventors, warriors, enthusiastic, vivacious amazing souls. And — something very foreign to me — they were so proud of their ostomies, and grateful that their ostomies enabled them to lead such happy, healthy and full lives.

Great Comebacks was an amazing opportunity to be honored. So much of my own story had taken place in the dark, unknown to the outside world. Nobody knew how I’d spend hours in the bathroom changing my bags every morning. Nobody knew how, when I was unable to eat or drink for years, I’d lock myself in my room for every waking hour and journal. I avoided being exposed to the outside world where normal people could eat and drink freely. It felt wonderful to be honest, and to share what coping with my medical situation was like for me. It also felt wonderful to gush about my father, a doctor who worked tirelessly to advocate for my health and save my life.

Great Comebacks was an important and truly amazing experience for me to have for my own personal sanity and emotional well-being. Part of me needed to know that, although I’m strong and can make a comeback just based on my own love for life, I needed to know that others were doing it, too: other “ostomates” who were so much more than ostomates. Seeing these people embrace their bodies and situations changed my entire view on myself, and how I view self-acceptance and self-love.

The culmination of Great Comebacks was being honored in a ceremony at the National Convention of the Wound Ostomy and Continence Nurses Society (WOCN) in Nashville, Tennessee. During the ceremony, videos of me, and the other regional Great Comebacks honorees, were filmed by Howie Klausner of Town Square Pictures, and shown to over 500 WOCN nurses.

These videos showcased how important WOC nurses are and the impact of their work on real people like me. I cried as nurses came up to tell me things like, “It is so amazing for us to hear the impact we make on people. Thank you for sharing your story.”

Great Comebacks taught me to be proud, to be honest and to love myself.

I see the Great Comebacks Awards as an experience that brings everything full circle. ConvaTec, the amazing company that makes it possible for ostomates to take care of their ostomies properly, honored me and other amazing ostomates. At the ceremony, we gave back our thanks to the wonderful nurses who make everything possible for us. I owe thanks to my body, nurses, doctors, family, friends, and the strength in me to keep making comeback after comeback. And thank you, Great Comebacks for bringing us all together in this beautiful realization.

Follow this journey on Amy’s website.

The Mighty is asking the following: What was one moment you received help in an unexpected way related to disability, disease or mental illness? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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To the Mom Who's Feeling Guilt Over Her Child's Rare Disorder

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I had come into the hospital that morning for a MRI to make sure everything would be in order for my delivery a month from then. The MRI, however, never happened due to being whisked away for an emergency cesarean section. Apparently the doctors had sensed something was wrong with the baby. The surgery seemed to be a success and I heard my daughter’s first cry, but moments later I saw a team of doctors and nurses run into the room, and the room became a cloudy haze to me.

I looked to my husband Salem and the look on his face was grim and exhausted. What did I miss? “Salem, what happened? Is the baby OK?” were I believe my first words to my husband when I came out of my haze in the recovery area, just in time to meet Dr. Ross from the trauma team. “Doctor, is she OK? What’s going on?” We were than informed that our daughter Karis was only born with 7 percent of her needed blood. She’d had a stroke moments after birth and had died, but Dr. Ross and her team were able to revive her. She needed a lot of blood and she was in a fight for her life. I signed the papers for approval to every test they needed to do and for the blood transfusion. Guilt started to creep in.

“We are trying to cross everything off of the list, but there is a very rare disorder that seems to fit. We will first try and rule out everything we can. It could end up being something simple.” If “simple” was there we never found it. Karis was later diagnosed with placental mesenchymal dysplasia associated with hepatic mesenchymal hamartoma (PMD with HMH).  Hearing that there is not much information about this disorder did not help the guilt I felt inside. “Maybe if I had eaten more plant-based products or red meats…maybe if I…” The cycle was constant. I had felt that my body had failed her. It stole almost everything from her and it was supposed to be my job to protect her. I was angry and scared but refused to let it show because she needed me.

By the time she was 3 months old, she had five doctors from different fields caring for her through outpatient services. From developmental, to liver specialists, to blood specialists, all the way to her regular pediatrician. My life was filled with hours of driving to and from appointments. With every ultrasound, blood draw and MRI, the guilt was there, just below the surface. I was filled with love and heartbroken at the same time, but each time I reminded myself of something a doctor told me.

Even now, years later, I can hear the last thing he said when we were about to leave the hospital for the first time: “Salem, your job is this: Look at your wife and remind her as often as you can that this is not her fault. She may not be saying anything about it but it is how she is feeling. And Danielle, it’s only natural to try and take blame for this because you are who carried her into this world, but it really isn’t your fault. Don’t hold her back, don’t treat her like something is wrong. A child’s brain is amazing and can reroute itself in amazing ways. If you let can let go of how you are feeling and can use that energy to give her any sort of learning tool, she will be just fine.” It was not easy but I have done my best to listen.

hand holding newborn baby hand in hospital
Danielle holding Karis’ hand.

Those words remind me throughout this journey to just go with the waves of life. If you fight them they will only tire you, but if you go with them they will bring you to places you never thought possible. So to the moms out there who have a child that needs just a bit more care than the rest: It is not your fault, just as it is not my fault that my daughter has PMD with HMH. It is our job to give them the best chances in life and in doing so we have to let them live the life that was set out for them, not the one defined by a disorder.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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When My Daughter With a Rare Diagnosis Danced With Her Father for the First Time

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We searched for Rodeo Championship BBQ Cook-Off booth numbers 913 and 915, where a party was being hosted for a camp in which my daughter, Samantha, participates. The area outside of the stadium was like a maze, but each aisle was labeled accordingly, and my husband John, Sam and I were getting closer.

From a distance, I heard dance music and I could see some children jumping around in a tent, while the balloon crowns they wore on their heads bounced up and down. I immediately knew this was where we were supposed to be. My heart smiled and I thought, “It’s good to be different.” Yet, at the same time, I didn’t feel like we were “different” at all.

As we entered the area, parents and children we knew greeted us. Any screaming, hand-flapping or pacing behaviors others might find “odd” or “abnormal” or even upsetting were perfectly “normal” and fascinating to me.

Sam was nervous when we first arrived. She sat in her wheelchair and held on tightly to John’s shirt and hand. She even frowned a little bit as she began to adjust to this new environment, where the mixed smells of barbeque, popcorn, funnel cakes, cinnamon cashews, corn dogs, hot dogs, and hamburgers filled the air. Within minutes, she noticed familiar, loving friends and realized she was safe.

dad posing for picture with daughter
Monica’s husband, John, and daughter, Sam.

It isn’t always easy taking Sam to new places. Sometimes she experiences sensory overload and will begin to scream, cry or run away and hide. Other times she is OK. Each time I expose her to a new experience or environment, I never know what to expect and I am always praying for the best, but I am also prepared for the worst. This is all I can do. Sam is who she is, and she will do what she does. She is full of surprises and this makes life interesting.

There are days, weeks, even months when it seems like nothing new and exciting is happening and Sam’s progress is slow. She was born with a chromosome 18 abnormality called distal 18q-. One in 40,000 babies is born with distal 18q-. As a result, Sam was born with a wide, right unilateral cleft lip and complete cleft palate, severe hearing impairment, ADHD, severe intellectual and developmental delays, delayed myelination and autism.

When I first found out about Sam and her distal 18q-, I was distraught. My heart was broken. I wondered how, why and what I had done to make this happen. I wanted to understand why this had happened to my little girl. I wondered why she was chosen to endure all of these challenges. It was unfair.

I had always imagined my little girl as a scholar, a ballerina, or an athlete. I dreamed of teaching her how to color, draw, paint and create arts and crafts. I dreamed of swimming, walking, running and riding bikes with her. I imagined her playing dolls and playing dress-up. I dreamed of shopping with her, taking her to the movies, taking her to Disneyland, riding the teacups, the roller coasters, and doing all the things I did and learned how to do when I was a child. I dreamed of teaching her how to cook like my mom had taught me. I dreamed of her first talent show, her first dance, her senior prom and the day John and I would send her off to college.

dad dancing with daughter
Sam dancing with her father.

On this brisk morning at the Rodeo Cook-Off, Sam wore a new dress, denim jacket and her black studded cowboy boots. Her pigtails were braided and she proudly wore the white, silver and purple beaded necklaces that one of the volunteers had given to her when we arrived. She was content. She walked around, observed the entertainment and then decided to sit and eat. There were burgers, hot dogs and chips, but she chose to eat the Cheerios I had brought from home and, of course, the chips!

When she finished, she surprised me by happily running to the dance floor. John and I stood nearby, and then she took John’s hands and they slowly began to dance. Sam was giving me one of those proud moments that I couldn’t wait to share with my friends and family. She wore a smile that lit up my world, and all I could do was smile in return.

I noticed other people were smiling too, and at that moment I realized that my little girl was being exactly who I imagined she would be! My heart was filled with so much love and joy. I knew John’s heart was full too.

On this rodeo day, Sam danced with her daddy for the first time.

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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The Beautiful Moments That Showed Me My Child With Special Needs Has a True Friend

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I’m standing next to my daughter, Samantha, as she sits in her wheelchair. I see Cameron approaching us, and he stops by to say hello. I watch as he bends down, looks at Sam, pats her on the shoulder and greets her. He compliments her on her appearance and then gently pulls a piece of her hair out of her mouth.

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Monica’s daughter, Sam, with her friend, Cameron.

Cameron is 16 years old and a junior in high school. He’s 6 feet tall, 195 pounds and one of the captains on the high school varsity wrestling team. He has been Samantha’s best friend for eight years, and though he and Sam have never been able to exchange a single word and their eye contact is minimal, she lights up when she’s sees him, giggles and takes his hand. My heart smiles.

Sam is 15 years old and a freshman in high school. She was born with a cleft lip and palate and was diagnosed with a chromosome 18q deletion at age 2. As a result, she is deaf, nonverbal and has severe cognitive and developmental delays.

Sam met Cameron through an elementary school Special Buddies program I created in our school district when Sam was in first grade. Back then, I noticed that her typically developing peers were staring at her and making comments about her. They were uncertain of her abilities, so she was often alone on the playground and in her own world. This made me sad. I didn’t want Sam to be alone in her own world, so my goal was to change this situation by raising awareness and sharing Sam with her peers.

friends
Cameron and Sam.

Sam is very sweet, loving and funny and manages to uplift anyone who takes the time to know her. Many might not know this by just looking at her, but Cameron did. He was in third grade and was instantly connected to Sam when he became her special buddy. Soon he became Sam’s challenger baseball buddy, and he grew to know and understand her and continued to be her “special buddy.”

Over the years, Cameron began to assist me at Sam’s summer day camps and go to the movies and sporting events with her. He attends her Special Olympics Texas competitions, visits her at home and always remembers her on special occasions. For her 8th grade dance, he gave her a lovely wrist corsage, and this school year he gave her a beautiful homecoming mum that his sweet, loving mother (and great friend to me) made and modified especially for Sam. I was so touched, I cried.

Cameron isn’t just Sam’s “buddy.” He is her true friend.

He isn’t her friend because he needs to earn service hours.

He isn’t her friend because he wants to reap rewards or praise.

He is her friend because he loves her and cares about her so genuinely and personally.

Cameron sees Sam.

He embraces their similarities, respects their differences and has earned Sam’s love and trust in return.

I have to admit that I was fearful their friendship would change as they both grew older. But as time passes, it keeps growing stronger. He may not realize this, but Cam has given Sam the social, emotional and practical support in life that every human being needs.

His time, love, dedication, patience, understanding and genuine friendship have helped Sam gain the power to integrate into our community. Cameron is a true blessing. For this, I am grateful.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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