I don’t look like other teenagers because I have Treacher Collins syndrome (TCS). TCS is a rare genetic disorder that can affect how your face looks. This can prevent the ears, eyelids, cheekbones, and jaws from developing normally.For me, having TCS means that my face is different and that I don’t communicate like other children.
I have a small chin, both sides of my nose are blocked, and I need a tracheostomy tube to be able to breathe. I don’t eat food by mouth, but instead use a special tube that goes into my stomach.
I don’t have ears and I wear a hearing aid to hear. I also cannot speak clearly so I learned other ways of communicating with people.
Because I couldn’t speak, when I started school I learned sign language. But the teacher and the other kids in my school didn’t get it, so I asked an adult (either a teaching assistant or my nurse) to translate for me. And because I was using sign language, people thought I couldn’t hear them, but with my hearing aid I can hear quite normally.
I used to wear a badge in class that said “Talk to me, I can hear you”, just to remind the kids that I can hear them and even though I can’t talk to them, they can still tell me. speak.
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When I was about eight years old, I finally had a program on my computer that I could use to talk on my own. It made it easier and I was able to be more independent. But the others still have to be patient and wait for me to type what I want to say.
A friend of mine recently learned sign language on the internet so he could talk to me. He’s a good friend and I’m glad we can talk now, but I only see him at school so I haven’t seen him for over a year.
Because of COVID-19, my parents decided it would be better for me to learn online at home. It’s hard for me to wear a mask because my face is small and I don’t have earrings for the earrings (although I just got a special one from CHEO that fits me now).
It’s normal for me to cough a lot during the day, especially when I eat my lunch, and my parents thought that would probably cause people to wonder if I have COVID-19. My parents were also worried that I could get the virus more easily because I have a tracheostomy.
I want other children to come and greet me without being afraid or feeling like I am not a child like them.-Zack Hodge Takacs
I know that a lot of children find it difficult to do distance schooling. But for me it went really well and I love the online class. I could chat using my computer, writing on paper, or using my iPad to communicate. This made it easier for me to say what I want during the course.
Only a few of my friends from last year were in my online course, but I have met some new kids. It’s good because growing up a lot of my friends were adults, and school is the only time I can really be with kids my age.
After school, I don’t go out with other kids except my 18-year-old sister Zoe. We play silly games together.
Even though I can’t talk to others, I still have fun and love being with people. Ever since I was little I have always wanted to be part of the conversation and would like my mom to translate what I said.
I don’t remember kids laughing at me or laughing at me, but my mom tells me that sometimes kids behave strangely when they see me.
The younger ones came up to me and looked at my face, and my mom had to say something to make them stop. Sometimes they would ask a question about my appearance and my mom would tell them that I was born that way. We’re all different.
If I hear someone say these things, I don’t mind because I know that I am loved by people who know me.
I am not like other 16 year olds but I can do a lot of things like other children and I am a nice person. I want other children to come and greet me without being afraid or feeling like I am not a child like them.