My Life, My Voice, My Story

Our society is filled with expectations, regardless of how we feel about them. It’s like I’m basically required to say I am “an autistic boy,” as most people prefer identity-first language—even though I don’t. My autism isn’t who I am entirely; it’s only one part of who I am. But that’s also because I have several diagnoses.

One that I do see as my identity is my mutism diagnosis—I am a mute boy. While I have no shame in talking about that aspect, I’m typically silent about the exact details of my condition. Two weeks ago, my older brother wrote a post and poem based on my mutism. He gave a list of conditions that cause similar results, and in that list, mutism is a diagnosis I have. But it doesn’t tell the full picture. It’s time that I do, also in respect to my older brother for trying to bring more awareness. What I am about to write, I still do with a lot of apprehension.

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The Medical Reality

So first, let me explain what bilateral vocal-fold agenesis actually means, because understanding the medical side helps explain everything else about my life. I was born without the tissue that makes sound in your throat—both sides are just… not there. There’s literally nothing there to vibrate and make noise.

To understand what’s missing in my throat, you need to know what vocal folds normally are. Most people call them “vocal cords,” but doctors prefer “vocal folds” because they’re not really like strings. They’re more like shelves or flaps of tissue that stretch across the top of your windpipe. Normal vocal folds are made of several layers. The outside is covered with a thin layer of cells, kind of like the inside of your cheek. Underneath that is a gel-like layer that lets the folds vibrate really smoothly. Then there’s muscle tissue that can tighten or relax to change the pitch of your voice. All of this is supported by ligaments and cartilage.

When normal people talk, air from their lungs pushes through these folds when they’re almost closed. This makes them vibrate super fast—like 100 to 200 times per second when you’re just talking normally. The vibrations create sound waves, and then your mouth and throat shape those waves into words.

The whole process of getting vocal folds starts really early when a baby is growing in their mom’s belly. Around week 4 of pregnancy, there’s this groove that forms in what will become the throat area. Over the next few weeks, this groove turns into the larynx (your voice box) and the trachea (your windpipe). The vocal folds themselves start forming around week 5-6. There are these swellings that appear on the sides of the developing larynx. Normally, these swellings would turn into the vocal fold tissue over the next few weeks. By week 8, the cartilage framework is forming. By week 10, everything should be separated and ready to work.

In my case, something went wrong during this process. The doctors say it’s “idiopathic,” which basically means “we have no freaking clue why this happened.” But from what they can tell, it probably happened around weeks 4-8 of my development. The timing is important because by this time, the basic body plan is being set up. If something goes wrong during this critical period, it can affect how organs develop. In my case, whatever signal was supposed to tell my body “hey, grow some vocal fold tissue here” just never happened or got disrupted somehow. It’s not anybody’s fault—not mine, not my birth parents’. It just happens sometimes.

The larynx structure itself formed okay—I have all the cartilage pieces like the thyroid cartilage (that’s your Adam’s apple) and the cricoid cartilage. The problem is that the actual vocal fold tissue just never developed. It’s like if you were building a house and you put up the frame and the roof, but forgot to install the doors.

When doctors look into my throat with their scopes, they see a larynx that looks pretty normal except for one huge thing: where there should be vocal folds, there’s just… nothing. No tissue, no muscle, no vibrating parts. Just empty space. Most people with vocal problems have vocal folds that are damaged, paralyzed, or not working right. But those people still have vocal folds—they’re just not functioning properly. In my case, the tissue that makes sound literally doesn’t exist.

Here’s the thing that makes this even more complicated: bilateral vocal-fold agenesis is incredibly rare. Like, so rare that when I tell medical professionals about it, they sometimes don’t believe me at first. There’s only been one documented case in medical literature, and that person also had tuberous sclerosis (a genetic condition that causes tumors to grow in different parts of the body). I would be the first documented case without tuberous sclerosis. That means when doctors want to research my condition or figure out treatment options, there’s basically no one else like me to compare to. It’s like being the only person in the world with a particular type of phone—good luck finding a manual or getting it fixed.

But here’s what people don’t get—it’s not just about not being able to say words and vocalize. Vocal folds don’t just make sound—they have other important jobs too.

They act like a protective valve for your lungs. When you swallow, they’re supposed to close tight to keep food and liquid from going into your lungs. When you cough, they slam shut and then open quickly to shoot air out and clear your throat. Without vocal folds, I don’t have this protection. That’s why eating is scary sometimes—if food or liquid goes down the wrong way, I can’t cough properly to get it out. My throat can’t create the pressure needed for a good cough because there’s no tissue to close off the airway.

The medical stuff is ongoing too. I have regular check-ups with ENT doctors, speech therapists, and specialists. Sometimes they talk about future surgeries or procedures, which honestly scares me. Like, what if they try to “fix” me and make things worse? What if I don’t want to be fixed? Because my condition is so rare, doctors are still figuring out how to best help me. They can’t just look up “bilateral vocal-fold agenesis treatment” in a textbook because there isn’t enough information written about it.

This is the reality of what’s actually wrong with my throat. It’s not just that I can’t talk—it’s that I’m missing a fundamental part of human anatomy that most people take for granted. And because it’s so rare, every doctor’s appointment is like a research project trying to figure out how to help someone with a condition that barely exists in medical literature.

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My Journey Through Foster Care

But my medical condition is just one part of a much more complicated story. The way I ended up where I am today involves a journey through foster care that shaped who I’ve become just as much as my vocal-fold agenesis has. I lived in foster care from age 5 until I was adopted at age 12. That’s a whole other story that messes with my head sometimes. I try not to think about my birth parents much because it brings up stuff I don’t want to deal with. They weren’t able to take care of me properly, and dwelling on it just makes me sad.

Foster care was… complicated. Some families were okay, some weren’t. The hardest part was that nobody really understood my condition. They’d get frustrated when I couldn’t talk, or they’d think I was being difficult on purpose. But it wasn’t all bad—I actually first learned sign language in foster care, which helped me communicate better. This was huge for me because up until then, I’d been struggling to communicate with just gestures and facial expressions. Learning sign language gave me my first real way to have conversations with people, even though not everyone knew how to sign back.

When my adoptive parents first met me, they didn’t care that I was mute. They learned how to communicate with me right away, and they never made me feel broken or weird about it. They’re the ones who got me all my communication devices and helped me share my love for writing. My adoptive dad reads all my poems and always tells me how proud he is of me. My adoptive siblings and grandparents are really supportive too. They’re not perfect, but they’re my real family.

Even though I love my adoptive family, I still carry scars from my past. I have this fear that people will leave me. Like, what if they get tired of dealing with my medical stuff? What if they decide I’m too much work? I know it’s not logical, but that fear is always there. It makes me clingy sometimes, and it makes me scared to get too close to people. I’m working on it in therapy, but it’s hard.

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Mental Health Struggles

All of this history—the medical stuff, the foster care, the adoption—it takes a toll on your mental health. I have PTSD, which causes depression and anxiety, and it makes everything ten times harder. Some days I wake up and everything feels heavy, like there’s this weight on my chest. I don’t want to get out of bed, I don’t want to write, I don’t want to do anything. Writing usually helps me feel better, but on depression days, even that feels impossible. It’s worse when I’m having a bad day with my mutism stuff—like when people are being jerks about it, or when I really need to say something important but I can’t. Those days I just want to disappear.

My anxiety from the PTSD is this constant worry that something bad is going to happen. Like when I’m having a good day, part of my brain is still waiting for it to fall apart. My heart starts beating really fast, my hands get sweaty, and I feel like I can’t breathe. The worst part is when I’m having an anxiety attack and I can’t even ask for help because I can’t talk. I have to try to get someone’s attention by waving or tapping them, which makes me feel even more helpless.

I see a therapist who’s really good at working with kids who have communication differences. She’s really cool and gets that I communicate differently. We do a lot of writing exercises, and sometimes I bring my poems to show her. The hard part is that a lot of therapy is about talking through your feelings, which is kinda ironic when you can’t talk. But my therapist is creative about it. We use art therapy, writing, and even some movement stuff.

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Navigating School Life

Of course, dealing with mental health challenges while being mute and autistic makes school life incredibly complicated. I have what’s called an “orzeczenie o potrzebie kształcenia specjalnego” (certificate of need for special education) and an “Indywidualny Program Edukacyjno-Terapeutyczny” (Individual Educational and Therapeutic Programme), which is Poland’s version of accommodations for students with disabilities. This means I get special accommodations, but that also means I’m “different” in ways that other kids notice.

My accommodations include:

• Written responses instead of oral participation in class
• Extra time for all assignments and tests
• Access to my communication tablet during lessons
• A quiet space I can go to when overwhelmed
• Written instructions for all assignments (not just verbal)
• Modified group work with understanding teachers
• Advance notice of schedule changes or substitute teachers
• Permission to use headphones during loud activities
• Alternative ways to present projects (written reports instead of oral presentations)
• A designated support person who understands my communication methods

But the daily reality is harder than what’s written on paper. Teachers sometimes forget I can’t participate in verbal activities. Group projects are awkward because I can’t contribute to discussions the same way. Substitute teachers often don’t understand my needs. Fire drills are terrifying because I can’t call out if I’m in danger. Lunch is tricky because I have to eat carefully and can’t chat with friends normally. PE class discussions are impossible for me to join.

Making friends when you’re mute is honestly weird and tough. At school, it feels like almost everything is about talking: chatting before class, yelling across the hallway, whispering stuff during lessons—stuff I can’t do. Sometimes I just stand there and watch, and it’s like I’m invisible. I try to jump in by waving or pulling faces or doing little gestures, but people miss them a lot.

Sometimes, kids will look at me, then keep talking like I’m not there at all. Or they just walk away, and I don’t get a chance to join in, even if I wanted to. Other times, I can tell people want to ask me something, but then they seem nervous, or maybe they don’t know how. There’s always someone who jokes, “Just say something!” and thinks they’re super funny. (They’re not.)

Some people actually do get curious and ask real questions, and that’s better, even if I have to write down my answer. But honestly, I’ve learned to be really good at using my face and hands to try and show what I’m thinking. It’s still not the same, but sometimes it works. Most of the time, though, it’s just me sitting by myself, doodling or playing on my phone while everyone else is talking about… whatever.

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Autism and Mutism

What makes school even more challenging is that being autistic AND mute is like playing life on expert mode. I’m already autistic and super shy, so being around people makes me nervous anyway. But being mute on top of that? It’s like having two different things working against me at the same time.

The sensory stuff is probably what gets me the most. I’m sensitive to loud noises, but I can’t tell people when sounds are bothering me. Like, when I first got adopted, my siblings didn’t know that certain sounds would drive me crazy. They’d be playing video games with the volume up, and I couldn’t focus on anything else. It drove me nuts, but I couldn’t just say “Hey, can you turn that down?” I’d have to physically get their attention first—tap them or wave at them—and then try to explain what I needed. By the time I went through all that, I usually just gave up and went to my room instead.

Sometimes my brain just gets too full and I need to step away from everything for a minute. When my siblings were still figuring out how I worked, they didn’t understand why I’d suddenly disappear to my room. They thought I was being antisocial or didn’t want to hang out with them. But I couldn’t quickly explain “I just need five minutes of quiet.” I had to go through this whole process of typing it out, and by then they’d already taken it personally.

Food is another layer of complexity. I have specific texture preferences because of my autism, which matters even more because swallowing is already difficult for me. At home, when dinner turns out to have a texture I can’t handle, I can’t quickly explain why. I have to grab my tablet or a notepad to write it down, and by the time I finish writing or typing, everyone thinks I’m being picky when really my brain just can’t handle certain textures. My siblings used to get confused when I’d refuse to eat something that looked normal to them.

Social situations are where both conditions really collide. I miss a lot of social cues that other people pick up on. I can’t engage in small talk, which is how a lot of friendships start. I don’t understand sarcasm or jokes that rely on tone of voice. Like, during lunch at school, my classmates would joke around with each other, and I’d be sitting there trying to figure out if they were being serious or not. I couldn’t ask “Wait, were you joking?” right in the moment, so I just had to guess. Sometimes I guessed wrong and they thought I was clueless or didn’t get their humor.

The nonverbal stuff that should help me communicate better? That’s complicated too. I can’t laugh out loud when something’s funny, so classmates think I don’t get their jokes. I can’t make those little sounds people make when they’re thinking like “um” or “ah.” I can’t whisper secrets during class or join in when we’re playing games at break. All that stuff that makes conversations feel natural—I just can’t do it. My classmates had to learn that just because I wasn’t making noise didn’t mean I wasn’t enjoying myself or paying attention.

Group activities at school are honestly the worst. Everyone is talking at once, making plans, deciding what to do for a project. I’m just sitting there trying to follow along, but I can’t jump into the conversation when I have an idea. I have to wait for everyone to stop talking, then type out what I want to say, and usually by then they move on to something else. It’s like being in a different time zone from everyone else. My classmates don’t know to pause and give me time to respond.

My autism makes organizing my thoughts harder, and not being able to talk makes that even more complicated. Sometimes I know exactly what I want to say, but getting it from my brain to where other people can understand it takes forever. I get overwhelmed by having too many communication choices—should I text? Write a note? Use my tablet? Pull someone aside? It’s a lot to think about when other kids just open their mouths and talk.

But here’s the thing—I’m getting better at figuring out what works for me. My siblings have learned to give me time to respond, and they include me in conversations even when it takes me longer. It’s still annoying sometimes, but it’s just how I work. And honestly, some of my autism traits actually help me. I notice things other people miss because I’m always watching instead of talking. Being mute has made me really good at reading people’s body language and facial expressions since I rely on nonverbal communication so much—which is actually unlike most autistic people who struggle with that stuff. So yeah, it makes things harder, but it’s not all bad.

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Being Different in Poland

Living in Poland adds another layer of complexity to all of this. Living here can feel pretty tough. Polish people are super social and love to chat nonstop. Family get-togethers are big and loud—exactly the kind of noise that makes me want to hide. Even though I grew up speaking Polish, I actually write mostly in English. It’s just easier for me to put my thoughts into English words—probably because most of my online friends do the same. When I write poems, they almost always come out in English. Some folks find that odd, but that’s just how my brain finds its voice.

Getting the right medical help for bilateral vocal-fold agenesis in Poland isn’t simple. Very few doctors here know anything about my condition, so my family and I sometimes have to travel abroad just to find specialists who might have ideas about how to help me. The silver lining is that Polish speech therapists are really good at teaching me safer ways to eat and communicate—like using thickened drinks, sitting up straight, taking small bites and sips, and focusing on my meal without distractions. Schools are slowly doing a better job of helping kids with disabilities, but it’s a mixed bag. Some teachers go out of their way to include me. Others just don’t know what to do—and that can be rough.

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Finding My Voice

Despite all these challenges, I’ve had to figure out how to communicate in a world designed for speaking people. Since I can’t talk, I write. A lot. Especially poems—that’s my thing. It helps me say all the stuff I can’t say out loud. Writing has become more than just a communication tool for me. Through poetry and prose, I can express complex emotions, observations, and experiences. Many people have told me that my writing is creative and insightful, which gives me confidence that my voice has value and impact.

Technology has opened up so many ways for me to communicate. I use my smartphone for texting and communication apps, a tablet with specialized AAC software, a laptop for writing and longer communications, and various apps for different situations. This means I can communicate complex ideas, “talk” to people all over the world, express myself creatively, access information and resources, and be independent in many situations. But technology has its limits too. Devices break or run out of battery, not all apps work for every situation, some people don’t understand how to interact with me when I’m using devices, technology can be expensive, and I still can’t use it effectively in emergencies sometimes.

People always ask how I communicate, like there’s just one answer. But honestly, I use about ten different methods depending on the situation.

For quick stuff:

• I text constantly with friends
• Write notes in class
• Keep a small notebook for quick communication
• Use my phone to type messages to people

For more complex communication:

• My tablet has AAC apps for when I need them
• I use voice-to-text apps (ironic, right?)
• Email for formal stuff

Beyond technology:

• I’m really good at facial expressions and use gestures and pointing a lot
• I’ve learned Polish, German, and British sign language
• Body language is huge for me

For deeper expression:

• Poetry is my main way of expressing feelings
• I write short stories sometimes
• I doodle and create art to communicate ideas (which is where this blog gets its name)

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Relationships and Connection

Learning to communicate has also taught me a lot about friendship and who’s really worth my time. Making friends when you’re mute is honestly pretty weird. It’s like this automatic filter that shows you who’s actually worth your time, but not in a way I planned or wanted.

The friends who turned out to be real ones just figured it out on their own. Like, they stopped trying to call me and started texting instead. When we’re all hanging out and everyone’s talking at once, they’ll ask me yes or no questions so I can actually join in, or they’ll wait for me to type something out without getting all impatient about it. When some jerk makes a stupid joke about me being mute, they’ll tell them to shut up without me even asking.

The best part is that they actually like reading my poems. They don’t just pretend to be interested—they’ll text me about ones I wrote, or ask me to write something about a topic they’re thinking about. They never try to “fix” me or suggest I should try talking more. They just get that this is how I am.

But then there are the other ones. The ones who get all fidgety when I’m trying to type a response, like they’re waiting for me to hurry up. They’ll be having this whole conversation and completely forget I’m even there. Or worse, they’ll make jokes about me not talking, like it’s funny instead of just how I am.

The worst ones are the ones who only want to be friends because they feel sorry for me. You can tell because they act all weird and overly nice, like they’re doing charity work or something. It’s so obvious and it makes me feel gross.

I used to think having tons of friends would be awesome, but honestly? I’d rather have two people who actually get me than a bunch of people who just put up with me. At least then I know the friendship is real.

Speaking of real relationships, one of the most surprising things that’s happened to me recently is that I actually have a girlfriend now—Aleksandra. I know, weird, right? I honestly didn’t think anyone would want to date someone who can’t talk.

We met at school and became friends first. She has OCD, generalized anxiety disorder, and major depressive disorder—basically the same mental health stuff I deal with, just different. When she told me about her depression and anxiety, I got it right away because I know what that feels like. And when she learned I’m mute and autistic, she didn’t make a big deal about it. She just asked how I like to communicate and then waited for me to type my answer.

The cool part is she actually likes my poems. Like, she’ll ask me to write about stuff and then get excited when I share them with her. She says I’m not broken and that she’s never going to give up on me, which is probably the most beautiful thing anyone’s ever said to me. I write a lot about feeling isolated or dealing with hard emotions, and she really gets those poems because she feels the same way sometimes.

She’s the one who kissed me first and asked if we could be more than friends. I was so surprised because I never thought someone would actually want to love me. But it felt right.

Now we text all the time about everything—school, random funny things, how much we miss each other, and yeah, our mental health stuff too. When I’m having a depressive episode, she’ll stay up with me through the worst nights, sending me messages every hour just so I know someone cares whether I exist. She doesn’t take it personally when I can’t even type much because she knows how that feels. When she’s having a tough time with her anxiety or OCD routines, I’ll write her personalized poems about how brave she is for fighting battles no one else can see, or just be her anchor when everything feels chaotic. I give her space without making her feel weird about it. We just wait it out together. But it’s more than just understanding each other’s struggles—we genuinely make each other happy.

She’s learning some sign language for me, which is really cool. We hold hands and hug and watch movies together. I don’t have to worry about talking during movies, so that’s perfect. Physical stuff like that helps both of us feel better when we’re having rough days.

I learned that being close to someone isn’t just about talking. She likes me for my writing, how I notice things others miss, and yeah, even the fact that I’m quiet. She says I taught her that you can have great conversations without saying anything at all.

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What People Get Wrong

Of course, not everyone understands me as well as Aleksandra does. There are so many things people get wrong about me and others like me. The biggest thing people get wrong is thinking I’m choosing not to talk. Like, when I was younger, teachers would get frustrated and think I was being stubborn. They’d say stuff like “Just try harder” or “You can do it if you really want to.” They didn’t get that there’s literally nothing there to make sound with. It’s like telling someone to fly by flapping their arms really hard.

Then there’s the opposite problem—people who think I’m deaf. They’ll start shouting at me or talking really slowly like I’m five years old. My ears work fine, thanks. It’s annoying when someone yells “CAN YOU HEAR ME?” right in my face. I just stare at them like, seriously?

The worst assumption is that I must be dumb or something. I’ve had people talk about me like I’m not even there, or they’ll ask my parents questions about me instead of asking me directly. It’s frustrating because I’m actually pretty smart—I just communicate differently. I can understand everything you’re saying. I just can’t say anything back.

People also think that because I have depression, I’m sad all the time. But I’m not this tragic figure who never smiles. I laugh (silently) at funny memes, I get excited about stuff, I have good days. Yeah, some days suck, but that’s not all there is to me.

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How I Cope

Over the years, I’ve learned what actually helps me get through the tough days and manage everything I’m dealing with. When I’m having a really tough day, I write about it. Sometimes it’s angry poetry where I just dump all my feelings onto the page. Other times it’s just random rambling until my brain stops being so loud. Getting it out of my head and onto paper makes the weight in my chest feel lighter.

I’ve learned to set aside time each evening to text friends or work on poems. It sounds weird, but treating it like a routine helps. When I’m overwhelmed and everything feels too much, I disappear to my room. I have this quiet corner with pillows, soft lighting, stuffed animals, my favorite blanket, and some books where I can just exist without having to perform or communicate with anyone.

Exercise helps too, especially when my depression and anxiety are acting up. I can’t talk while I’m doing it anyway, so it’s one activity where being mute doesn’t matter. My girlfriend’s dad has a home gym, and he lets me train there. He’s also been teaching me some self-defense, which is pretty cool. It’s nice having someone who doesn’t make a big deal about me being mute—we just focus on the workout or the moves he’s showing me.

Learning to fight for myself has been one of the hardest but most important things I’ve had to figure out. For a long time, I just let adults make decisions about me without pushing back. But last year, some kids in my class started making jokes about me during group projects, pretending they couldn’t “hear” me when I tried to contribute through writing or gestures. It was humiliating, and the teacher just ignored it. I felt so frustrated that I finally told my parents what was happening. They helped me figure out what to say and then we met with the principal together. It felt scary to speak up about it, even with my parents there, but things actually changed.

That experience changed something in me. Now I actually show up to meetings about my educational plan instead of just sitting there like a decoration while adults discuss my life. When something isn’t working, I tell my parents so we can fix it together. I’ve learned that if I don’t advocate for myself somehow, no one else will.

Through all of these experiences, I’ve realized that being mute and autistic has taught me things about myself that I might not have learned otherwise. I’m more observant than most people. I’m patient. I’m creative. I’m empathetic because I know what it’s like to be different. Every time someone is mean about my condition, every time I figure out a new way to communicate, every time I overcome a challenge—I get a little bit stronger. It’s not easy, but I’m tougher and braver than I used to be.

That doesn’t mean every day is easy, though. Some days I still hate being different. I hate that I can’t laugh out loud or sing along to music. But I’m learning that my differences are also my strengths. My poetry wouldn’t be the same if I could talk. My observation skills wouldn’t be as sharp if I was busy chatting all the time.

And then there are all the little everyday challenges that most people never think about. Like, I can’t call out “goodbye” when I leave for school, so I have to find whoever I’m saying bye to and wave or give them a hug.

My communication devices have to stay charged, which means I carry power banks everywhere like I’m some kind of tech person. If my tablet dies in public, my voice dies with it. I can’t ask to go to the bathroom verbally, so I have to catch the teacher’s eye and hope they understand my gestures.

Eating is more complicated than it should be. Family dinners can get awkward when everyone’s talking and I’m just sitting there eating. I have to plan ahead for social situations because I can’t quickly say “I’m allergic to that” or “I don’t like this.”

Sometimes I feel like I’m living life in slow motion while everyone else is moving at normal speed. But maybe that’s not entirely a bad thing.

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Looking Forward

When I think about the future, I have hopes and fears just like any other teenager, but mine come with some unique complications. I want to be a writer or poet—that part feels right. I’m also interested in working with other people who have disabilities, using my experience to help others who feel as lost as I sometimes do.

But then the practical stuff hits me. How do I handle job interviews when I can’t speak? What if I want to live on my own and there’s an emergency? I want to travel and see the world, but traveling when you can’t talk in a foreign country sounds terrifying.

I want to get married and have a family someday, but I worry about being a parent when I can’t call out to my kids. What if they’re in danger and I can’t shout for them to stop? What if I can’t be the parent they need because of my communication challenges?

But despite all the challenges I face, there are genuinely good parts about being different. I notice stuff other people miss because I’m always watching. Like, I can tell when someone’s having a bad day before they even say anything. I get really focused when I’m writing because I’m used to being in my own head. I’m probably more patient than other kids my age because I have to be. And I think I understand other people who feel left out because I know what that’s like.

Being forced to slow down and really think about how to communicate has made me more thoughtful about what I want to say. When other kids just blurt out whatever comes to mind, I have to consider my words carefully. That’s made me a better writer and helped me understand the power of choosing the right words.

I’ve also become really creative at problem-solving. When you can’t do things the “normal” way, you learn to find alternatives. Sometimes those alternatives end up being better than the original plan. Like when my class was doing a group presentation and I couldn’t speak, I created this visual story with drawings and written captions that everyone said was the most engaging part of the whole presentation.

I’ve learned that talking isn’t the only way to connect with people. The people who matter will figure out how to understand you.

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My Message

If there’s anything I want people to take away from reading about my life, it’s this: I have thoughts and feelings just like everyone else. I just express them differently. I don’t need your pity. I need your understanding and patience. I can do almost everything other teenagers can do—just in my own way. My condition doesn’t define me. I’m a whole person with interests, dreams, and goals. I have a voice. It’s just not the kind you hear with your ears.

To other kids who might be reading this and feeling different or struggling with their own challenges: your voice matters, whatever form it takes. Find your way to express yourself, whether it’s writing, art, sign language, or something else entirely. The right people will learn to hear you.

I’m still figuring out a lot of this stuff. I’m only 13, and I have a lot of growing up to do. But I’m learning that you don’t need to speak to have something important to say. And maybe that’s exactly the kind of voice the world needs to hear.

This is my story. This is my voice. This is me.

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Thank You

A huge thank you to my doctors for making sure all the medical details are accurate and factual, to my therapist for helping me sort out my feelings and stay strong, to my family and former foster parents and foster siblings for always being there for me, to my friends and my girlfriend for believing in my voice, and to you for taking the time to read my story and understand what life is like for someone like me—your support means everything.