This First Particular person 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 Particular person tales, please see.
I do not appear to be 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 fashioned. 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, each side of my nostril are blocked and I want a tracheostomy tube to be capable of breathe. I do not eat meals via my mouth however as a substitute use a particular tube that goes into my abdomen.
I haven’t got ears and I put on a listening to assist to listen to. I additionally can not converse clearly so I realized different methods to speak with individuals.
As a result of I could not discuss, after I first began college I realized signal language. However the trainer and different youngsters at my college 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, individuals thought I could not hear them, however with my listening to assist I can hear fairly usually.
I used to put on a reputation tag at school that mentioned “Speak to me, I can hear you,” simply to remind youngsters I can hear them and although I am unable to discuss to them, they’ll nonetheless discuss to me.
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After I was about eight years previous, I lastly obtained a program on my laptop I might use to speak for myself. It made issues simpler, and I may very well be extra impartial. However different individuals nonetheless need to be affected person and wait till I kind in what I need to say.
Certainly one of my mates not too long ago realized signal language from the web so he might discuss to me. He is an effective buddy and I am glad we are able to now discuss, however I solely see him in school so I have never seen him for over a yr.
Due to COVID-19, my dad and mom determined it might be finest 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 obtained a particular one from CHEO that now matches).
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 could most likely trigger individuals to surprise if I’ve COVID-19. My dad and mom have been additionally frightened I’d get the virus simpler as a result of I’ve a tracheostomy.
I need different youngsters to return say hello to me with out being afraid or feeling like I am not a child identical to them.– Zack Hodge Takacs
I do know a variety of youngsters battle with doing college at a distance. However for me, it went rather well and I like the web classroom. I might chat utilizing my laptop, by writing on paper, or utilizing my iPad to speak. That made it simpler to say what I need throughout class.
Only some of my mates from final yr have been in my on-line class, however I met some new youngsters. It is good as a result of rising up, a lot of my mates have been adults, and faculty is the one time I actually get to be with youngsters my very own age.
After college, 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 discuss to different individuals, I nonetheless have enjoyable and like being round individuals. 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 keep in mind youngsters laughing at me or making enjoyable of me however my mother tells me generally 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. Typically they might ask a query about why I look the best way I do, and my mother would inform them I used to be born that approach. All of us look totally different.
If I hear somebody say this stuff, it would not hassle me as a result of I do know I’m liked by the individuals who know me.
I do not appear to be different 16-year-olds however I can do a variety of the identical issues as different youngsters, and I’m a pleasant particular person. I need different youngsters to return say hello to me with out being afraid or feeling like I am not a child identical to them.