This First Individual article is the expertise of Zack Hodge Takacs, a 16-year-old in Ottawa with a uncommon genetic situation. For extra details about CBC’s First Individual tales, please see the FAQ.
I do not seem like different youngsters as a result of I’ve Treacher Collins Syndrome (TCS). TCS is a uncommon genetic situation that may have an effect on how your face is shaped. It could possibly trigger ears, eyelids, cheekbones and jawbones to not develop usually.
For me, having TCS means my face seems totally different and I do not talk like different youngsters do.
I’ve a small chin, either side of my nostril are blocked and I want a tracheostomy tube to be in a position to breathe. I do not eat meals by my mouth however as an alternative use a particular tube that goes into my abdomen.
I haven’t got ears and I put on a listening to help to listen to. I additionally can not converse clearly so I realized different methods to speak with folks.
As a result of I could not speak, after I first began faculty I realized signal language. However the trainer and different youngsters at my faculty did not perceive it, so I had an grownup (both an academic assistant or my nurse) translate for me. And since I used signal language, folks thought I could not hear them, however with my listening to help I can hear fairly usually.
I used to put on a reputation tag in school that mentioned “Speak to me, I can hear you,” simply to remind youngsters I can hear them and regardless that I am unable to speak to them, they will nonetheless speak to me.
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Once I was about eight years outdated, I lastly bought a program on my pc I may use to speak for myself. It made issues simpler, and I may very well be extra unbiased. However different folks nonetheless need to be affected person and wait till I kind in what I need to say.
One among my mates not too long ago realized signal language from the web so he may speak to me. He is an effective buddy and I am glad we will now speak, however I solely see him at college so I have not seen him for over a yr.
Due to COVID-19, my dad and mom determined it could be greatest if I did on-line studying at dwelling. It’s tough for me to put on a masks as a result of my face is small and I haven’t got ears for the loops (although I simply bought a particular one from CHEO that now suits).
It’s regular for me to cough so much throughout the day, particularly after I eat my lunch, and my dad and mom thought this might most likely trigger folks to surprise if I’ve COVID-19. My dad and mom had been additionally anxious I would get the virus simpler as a result of I’ve a tracheostomy.
I would like different youngsters to come back say hello to me with out being afraid or feeling like I am not a child similar to them.– Zack Hodge Takacs
I do know numerous youngsters battle with doing faculty at a distance. However for me, it went rather well and I like the web classroom. I may chat utilizing my pc, by writing on paper, or utilizing my iPad to speak. That made it simpler to say what I would like throughout class.
Just a few of my mates from final yr had been in my on-line class, however I met some new youngsters. It is good as a result of rising up, lots of my mates had been adults, and faculty is the one time I actually get to be with youngsters my very own age.
After faculty, I do not hang around with different youngsters besides my 18-year-old sister Zoe. We play foolish video games collectively.
Even when I am unable to speak to different folks, I nonetheless have enjoyable and like being round folks. Since I used to be little I’ve at all times needed to be a part of the dialog, and I’d need my mother to translate what I used to be saying.
I do not bear in mind youngsters laughing at me or making enjoyable of me however my mother tells me typically youngsters would act unusually once they noticed me.
Youthful youngsters would stroll as much as me and stare at my face, and my mother must say one thing to get them to cease. Generally they’d ask a query about why I look the best way I do, and my mother would inform them I used to be born that means. All of us look totally different.
If I hear somebody say these items, it does not trouble me as a result of I do know I’m cherished by the individuals who know me.
I do not seem like different 16-year-olds however I can do numerous the identical issues as different youngsters, and I’m a pleasant individual. I would like different youngsters to come back say hello to me with out being afraid or feeling like I am not a child similar to them.