05 May Finding Creative Ways to Live with Apraxia by Tessa McEvoy
Apraxia Kids: Please tell us about yourself and your journey with apraxia of speech.
At 9 months old, I was adopted from China. My time in the orphanage led to a lot of food neediness and dysregulation, a story for another time. However, as much as I loved to eat, I could not chew or swallow food. At 12 months of age, my mother got me into occupational therapy. Sensory work including brushing work, swinging, and joint compressions, helped organize my body and loosen up my mouth to the point that I could start eating. However, I could not bite through a cracker until I was two (don’t get me started on bagels). Turns out, I had oral motor apraxia not just apraxia of speech. By three, lettuce along with most other foods presented only mild challenges. Ironically, I was and still am a total foodie. So “yes” to any new foods.
I was lucky that my mother worked in developmental neuropsychology. She knew how to spot problems really early and therefore start me in therapies. She also felt that I was talented too, so she ensured that I had ways to show my talents. At 15 months old, I started speech therapy, but was making little to no progress. My mother started exploring other therapies to reset my neurology. She put me into cranial sacral therapy. This therapy helped my jaw move more. Still, I couldn’t say a word. My mother taught me sign language while we waited for spoken words. Side note: It was pretty lonely for my mother as she watched other kids around me chat with one another or their parents (but I was a rock star in fancy restaurants, quiet and an adventurous eater).
My speech therapist mentioned that my speech would start in my fingertips. Once I could use my fingers with more dexterity, that was a sign that my mouth would start to work better too. Soon after I turned three, I could get my fingers to show that I was three years old. I quickly jumped from twenty to two hundred signs. About six months after that, I said my first words: “mooo” “maaa” and “mo” (that one meant “no”). I would like to say that speech took a great leap forward from there, but it did not. I fought for every sound. By five, I was able to use a mixture of sign language and speech, but I still could not speak a whole sentence in a way that anyone but my mother could understand. I knew to start my “w” sound with “ooo,” but I still often pronounced “water” and “nohda.” I knew to start the “y” sound with “eee”, but “yes” still often came out as “nes.”
It was hard to make friends because I could not talk to them. It was hard to convince teachers I could read and write because I could not talk. Luckily, I could draw and work with just about any art mediums (I was a star with pipe cleaners, making elaborate crowns). I loved science and geography. I loved bugs and turned out to be pretty good at catching snakes. That was one way to impress the boys. I was so creative that I was not lonely as a child. I played with kids sometimes and had one good friend by 3rd grade.
Middle school and high school were lonely. It was not a time to be different and I was really different. My speech was still pretty muddy. I absolutely could not get into the conversational flow. And I was just otherwise different, not interested in the clothes, music, hair, or politics of adolescence. I had no friends and was lucky enough on any day when other kids were at least friendly. My teachers were mostly really good and supportive. My mom helped fill the gaps in my social life by directing my strengths into communities on the internet. My speech disability did not show when I was typing (except for the bad spelling). For example, I was really into aerospace and astrophysics for several years. As is my style, I created a whole cartoon series about a girl who wanted to be an astronaut. I got involved in the community of young people (many in college and grad school) who were making a name for themselves in the sciences. My cartoon, Space Cadet Wannabe, became quite a hit. I became involved with The Mars Generation and, at 17, was selected as one of 24 Under 24 Leaders and Innovators in Space and STEAM.
So, I learned to lead with my strengths. I am a digital design major at the University of Colorado in Denver. I already do a lot of freelance art, logos and YouTube banners for a side hustle. I can meet people and make friends. My speech continues to smooth out, but it is still far from typical. I am thinking of getting back into speech therapy, but have not quite found the time. In some ways, that is good. It means I am busy having a life, working with what I have.
Apraxia Kids: How is life different now as an adult compared to when you were a child? How is communication similar?
Growing up, I could not hold a conversation. Whenever I spoke with someone, I asked them a series of questions. Conversations went something like this:
“Hi, how are you?”
“Good, and you?”
“How is school?”
“It’s going good, math is hard.”
“How are you?”
I did not know how to build upon their answers. My Apraxia led to a lonely adolescence and young adulthood. In elementary school I didn’t care that nobody wanted to play with me. I didn’t want to hang out either. I spent much of recesses meditating in the peace garden before re-entering the overstimulation of the classroom.
However, by late middle school I kept asking my mother, “What are we doing this weekend?” She said it was time to try making friends. But it was too late. All my classmates already bonded with one another while I struggled to hold a conversation. Even when I tried getting to know my classmates, nobody showed any interest in a friendship. Weekend plans mostly ended with: “I’m sorry Tessa, but I’m busy”. Then I saw posts of everyone hanging out together. Social media was a double edged sword for me. It was easier to communicate in writing, but no one seemed to want me around in person.
High School was some of my worst years. The two popular girls decided that I didn’t belong, so they encouraged everyone to block me on Instagram. This further isolated me from the group since I relied on Instagram posts to stay in the loop. Without knowing who liked what, I fell behind in conversations that I already struggled to keep up with. Nearly every time I spoke, I got an eye roll. One girl told me that I sounded like a broken recorded player. I found myself asking the same questions over and over again because I wasn’t sure what everyone was talking about (mostly posts on Instagram which I was blocked from).
Entering college, I had enough basic conversation skills to kindle friendships with a brand new group of people. Quickly, I began making friends in my animation course. We liked similar things including art and old Disney classics. Still, I did not make any close friends or friends who wanted to do things on the weekend. At least it was a start.
My speech patterns remain stilted and repetitive, even to this day, not a good combination for deep conversations. Slowly, I am learning to branch out. Instead of starting every sentence with, “how”, “I like…” or “I thought…” I consciously push myself to start each sentence with something different, yet fitting to the conversation. It can be a mental challenge to do so.
At the moment, I do have a few friends (mostly online) who I talk to almost every day. These friendships remind me of the long way I have come. And that even if I couldn’t see the light, the light will eventually show up.
Apraxia Kids: What inspired you to create your social media accounts?
I have always created social media accounts around interests. Some lasted for years and some for only months. I doubt I can even remember them all, but I had communities around Space Travel, Disney World, and unusual art just to name a few. I even had an Instagram dedicated to “70s food fails”.
I was inspired to create the Facebook page Apraxia Story after a European study abroad trip went wrong in 2020. The teacher removed me from the program since I didn’t disclose my disability on my disclosures form. Oddly, I was accepted on the trip before submitting the form. One requirement was a verbal interview, which I passed.
After my removal, I spiraled into depression. The pandemic quarantine did not help. Some days, I couldn’t get out of bed. Others I sat zombified at the dining room table. Yet again, I was reminded that I was different and couldn’t pass for “normal” even if I wanted to. I thought, instead of hiding my disability (which didn’t work), what if I embrace my apraxia?
That is when I decided to start Apraxia Story in hopes of raising awareness along with building compassion for the struggles people with apraxia endure. I hope that by sharing my story, more and more people understand that apraxia affects not only one’s speech, but their lives and livelihood too.
Apraxia Kids: What is the creative process like when you create your art and YouTube videos? How do you decide what your content will be?
When I create content, I think about what is both relevant to me and the apraxia community. After finding the Apraxia Kids: Official Support Group, I tend to cater my Facebook posts towards parents since they are the most active audience. I enjoy telling my story to spread hope and to show that improvements will happen, even if they take years.
Most of my posts come from the heart or whims of sudden inspiration. It did take a while before I found my voice. There were definitely posts that resonated with people, so I knew I was being helpful. I also go back into my feed for ideas or look for drawings that I really liked. Whenever I do an educational post, I look through apraxia related groups and pages to figure out what popular subjects are.
Overall, producing content is a lot of passionate guess work.
Apraxia Kids: What do you wish everyone knew about childhood apraxia of speech?
I wish that people knew that intellect isn’t based on speech, but rather someone’s talent. In our society, people tend to judge on speech (probably in most societies). It can be nerve wracking going out into public knowing that you will present your weakness as soon as you open your mouth to say hi. I also wish that more people would spend time getting to know me before passing a judgment. Whenever I talk with someone for a while, that’s when they notice that I am more than a disability. I enjoy getting to know people, but apraxia often gets in the way.
Apraxia Kids: How are you planning on making an impact during Apraxia Awareness Month?
This year for Apraxia Awareness Month, I plan on doing art for apraxia families and continue to tell my story on Facebook. I also hope to launch an Apraxia Story website on May 1st so that I can reach people who are not on Facebook.
My mom and I are planning on doing some educational talks on apraxia. We hope to touch on subjects like the fact that very few kids with apraxia just deal with apraxia alone. A lot of kids, including myself, face multiple challenges. We also want to cover misconceptions and stigma surrounding apraxia.
Be sure to follow Tessa’s Facebook Page Apraxia Story to learn more about her journey with apraxia and to experience her incredible drawings and videos.
Check out Tessa’s YouTube video “What it is like Living with Oral Motor Apraxia? Apraxia Awareness Month Short Animation Film” to learn more about what it is like living with apraxia.
Apraxia Kids: Please tell us about yourself and your journey with apraxia of speech.
At 9 months old, I was adopted from China. My time in the orphanage led to a lot of food neediness and dysregulation, a story for another time. However, as much as I loved to eat, I could not chew or swallow food. At 12 months of age, my mother got me into occupational therapy. Sensory work including brushing work, swinging, and joint compressions, helped organize my body and loosen up my mouth to the point that I could start eating. However, I could not bite through a cracker until I was two (don’t get me started on bagels). Turns out, I had oral motor apraxia not just apraxia of speech. By three, lettuce along with most other foods presented only mild challenges. Ironically, I was and still am a total foodie. So “yes” to any new foods.
I was lucky that my mother worked in developmental neuropsychology. She knew how to spot problems really early and therefore start me in therapies. She also felt that I was talented too, so she ensured that I had ways to show my talents. At 15 months old, I started speech therapy, but was making little to no progress. My mother started exploring other therapies to reset my neurology. She put me into cranial sacral therapy. This therapy helped my jaw move more. Still, I couldn’t say a word. My mother taught me sign language while we waited for spoken words. Side note: It was pretty lonely for my mother as she watched other kids around me chat with one another or their parents (but I was a rock star in fancy restaurants, quiet and an adventurous eater).
My speech therapist mentioned that my speech would start in my fingertips. Once I could use my fingers with more dexterity, that was a sign that my mouth would start to work better too. Soon after I turned three, I could get my fingers to show that I was three years old. I quickly jumped from twenty to two hundred signs. About six months after that, I said my first words: “mooo” “maaa” and “mo” (that one meant “no”). I would like to say that speech took a great leap forward from there, but it did not. I fought for every sound. By five, I was able to use a mixture of sign language and speech, but I still could not speak a whole sentence in a way that anyone but my mother could understand. I knew to start my “w” sound with “ooo,” but I still often pronounced “water” and “nohda.” I knew to start the “y” sound with “eee”, but “yes” still often came out as “nes.”
It was hard to make friends because I could not talk to them. It was hard to convince teachers I could read and write because I could not talk. Luckily, I could draw and work with just about any art mediums (I was a star with pipe cleaners, making elaborate crowns). I loved science and geography. I loved bugs and turned out to be pretty good at catching snakes. That was one way to impress the boys. I was so creative that I was not lonely as a child. I played with kids sometimes and had one good friend by 3rd grade.
Middle school and high school were lonely. It was not a time to be different and I was really different. My speech was still pretty muddy. I absolutely could not get into the conversational flow. And I was just otherwise different, not interested in the clothes, music, hair, or politics of adolescence. I had no friends and was lucky enough on any day when other kids were at least friendly. My teachers were mostly really good and supportive. My mom helped fill the gaps in my social life by directing my strengths into communities on the internet. My speech disability did not show when I was typing (except for the bad spelling). For example, I was really into aerospace and astrophysics for several years. As is my style, I created a whole cartoon series about a girl who wanted to be an astronaut. I got involved in the community of young people (many in college and grad school) who were making a name for themselves in the sciences. My cartoon, Space Cadet Wannabe, became quite a hit. I became involved with The Mars Generation and, at 17, was selected as one of 24 Under 24 Leaders and Innovators in Space and STEAM.
So, I learned to lead with my strengths. I am a digital design major at the University of Colorado in Denver. I already do a lot of freelance art, logos and YouTube banners for a side hustle. I can meet people and make friends. My speech continues to smooth out, but it is still far from typical. I am thinking of getting back into speech therapy, but have not quite found the time. In some ways, that is good. It means I am busy having a life, working with what I have.
Apraxia Kids: How is life different now as an adult compared to when you were a child? How is communication similar?
Growing up, I could not hold a conversation. Whenever I spoke with someone, I asked them a series of questions. Conversations went something like this:
“Hi, how are you?”
“Good, and you?”
“How is school?”
“It’s going good, math is hard.”
“How are you?”
I did not know how to build upon their answers. My Apraxia led to a lonely adolescence and young adulthood. In elementary school I didn’t care that nobody wanted to play with me. I didn’t want to hang out either. I spent much of recesses meditating in the peace garden before re-entering the overstimulation of the classroom.
However, by late middle school I kept asking my mother, “What are we doing this weekend?” She said it was time to try making friends. But it was too late. All my classmates already bonded with one another while I struggled to hold a conversation. Even when I tried getting to know my classmates, nobody showed any interest in a friendship. Weekend plans mostly ended with: “I’m sorry Tessa, but I’m busy”. Then I saw posts of everyone hanging out together. Social media was a double edged sword for me. It was easier to communicate in writing, but no one seemed to want me around in person.
High School was some of my worst years. The two popular girls decided that I didn’t belong, so they encouraged everyone to block me on Instagram. This further isolated me from the group since I relied on Instagram posts to stay in the loop. Without knowing who liked what, I fell behind in conversations that I already struggled to keep up with. Nearly every time I spoke, I got an eye roll. One girl told me that I sounded like a broken recorded player. I found myself asking the same questions over and over again because I wasn’t sure what everyone was talking about (mostly posts on Instagram which I was blocked from).
Entering college, I had enough basic conversation skills to kindle friendships with a brand new group of people. Quickly, I began making friends in my animation course. We liked similar things including art and old Disney classics. Still, I did not make any close friends or friends who wanted to do things on the weekend. At least it was a start.
My speech patterns remain stilted and repetitive, even to this day, not a good combination for deep conversations. Slowly, I am learning to branch out. Instead of starting every sentence with, “how”, “I like…” or “I thought…” I consciously push myself to start each sentence with something different, yet fitting to the conversation. It can be a mental challenge to do so.
At the moment, I do have a few friends (mostly online) who I talk to almost every day. These friendships remind me of the long way I have come. And that even if I couldn’t see the light, the light will eventually show up.
Apraxia Kids: What inspired you to create your social media accounts?
I have always created social media accounts around interests. Some lasted for years and some for only months. I doubt I can even remember them all, but I had communities around Space Travel, Disney World, and unusual art just to name a few. I even had an Instagram dedicated to “70s food fails”.
I was inspired to create the Facebook page Apraxia Story after a European study abroad trip went wrong in 2020. The teacher removed me from the program since I didn’t disclose my disability on my disclosures form. Oddly, I was accepted on the trip before submitting the form. One requirement was a verbal interview, which I passed.
After my removal, I spiraled into depression. The pandemic quarantine did not help. Some days, I couldn’t get out of bed. Others I sat zombified at the dining room table. Yet again, I was reminded that I was different and couldn’t pass for “normal” even if I wanted to. I thought, instead of hiding my disability (which didn’t work), what if I embrace my apraxia?
That is when I decided to start Apraxia Story in hopes of raising awareness along with building compassion for the struggles people with apraxia endure. I hope that by sharing my story, more and more people understand that apraxia affects not only one’s speech, but their lives and livelihood too.
Apraxia Kids: What is the creative process like when you create your art and YouTube videos? How do you decide what your content will be?
When I create content, I think about what is both relevant to me and the apraxia community. After finding the Apraxia Kids: Official Support Group, I tend to cater my Facebook posts towards parents since they are the most active audience. I enjoy telling my story to spread hope and to show that improvements will happen, even if they take years.
Most of my posts come from the heart or whims of sudden inspiration. It did take a while before I found my voice. There were definitely posts that resonated with people, so I knew I was being helpful. I also go back into my feed for ideas or look for drawings that I really liked. Whenever I do an educational post, I look through apraxia related groups and pages to figure out what popular subjects are.
Overall, producing content is a lot of passionate guess work.
Apraxia Kids: What do you wish everyone knew about childhood apraxia of speech?
I wish that people knew that intellect isn’t based on speech, but rather someone’s talent. In our society, people tend to judge on speech (probably in most societies). It can be nerve wracking going out into public knowing that you will present your weakness as soon as you open your mouth to say hi. I also wish that more people would spend time getting to know me before passing a judgment. Whenever I talk with someone for a while, that’s when they notice that I am more than a disability. I enjoy getting to know people, but apraxia often gets in the way.
Apraxia Kids: How are you planning on making an impact during Apraxia Awareness Month?
This year for Apraxia Awareness Month, I plan on doing art for apraxia families and continue to tell my story on Facebook. I also hope to launch an Apraxia Story website on May 1st so that I can reach people who are not on Facebook.
My mom and I are planning on doing some educational talks on apraxia. We hope to touch on subjects like the fact that very few kids with apraxia just deal with apraxia alone. A lot of kids, including myself, face multiple challenges. We also want to cover misconceptions and stigma surrounding apraxia.
Be sure to follow Tessa’s Facebook Page Apraxia Story to learn more about her journey with apraxia and to experience her incredible drawings and videos.
Check out Tessa’s YouTube video “What it is like Living with Oral Motor Apraxia? Apraxia Awareness Month Short Animation Film” to learn more about what it is like living with apraxia.
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