Mom of 2 boys

jesskavs

jesskavs

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Hello, My name is Jessika. I am the mom of 2 beautiful boys. Jonah who is Deaf, and Samsun who is hearing. My husband and I have been married for 10 years. We are a hearing family. Jonah was born with a rare genetic disorder called CHARGE syndrome. He was born without any hearing nerves or cochlear shell in his left ear, and with a small cochlear and narrow tube in the Right. He started losing his hearing more and more from 65% at birth, to now haivng 12-15% hearing. He does not wear a hearing aid, as he refuses it. I do not make him. I have been signing myself since I was 10 years old, and have taught him. He is fluent in ASL, and goes to a hearing school with an Interpreter. He is intellectually on par with all the children in his class. He came home with B's for grade 1, and is flourishing in grade 2.
We do not live near the Deaf schools in our province (Ontario), but we have implemented tons of support for him at the school level, even bringing in ASL curriculum for him to learn from.
Jonah has taught his best friends ASL, and the school kids are all interested in the language. His entire class did a song in ASL for the Christmas Concert, and last year, the grade 7 and 8 classes did a song for Jonah for Christmas. It's amazing how inclusive our school is towards him. I love our school.
Jonah has never been given the chance to feel "different" we have immersed him into the Deaf Culture here in our home town. He attends Deaf dances, clubs and has been interacting with Deaf adults. Unfortunately he is the only Deaf child here in our community, so it's hard to have him play with a peer his own age who can communicate fluently. He does well to get his point across to non-signing hearing friends, but I feel bad for him when he has to do that. (He won't allow me to interpret, because who wants Mom around Interpreting during a play date?)
So, that is who we are, I love that he has opened up a whole new world for all of us to explore.
 
He is fluent in ASL, and goes to a hearing school with an Interpreter. He is intellectually on par with all the children in his class. He came home with B's for grade 1, and is flourishing in grade 2.
We do not live near the Deaf schools in our province (Ontario), but we have implemented tons of support for him at the school level, even bringing in ASL curriculum for him to learn from.
Jonah has taught his best friends ASL, and the school kids are all interested in the language. His entire class did a song in ASL for the Christmas Concert, and last year, the grade 7 and 8 classes did a song for Jonah for Christmas. It's amazing how inclusive our school is towards him. I love our school.
Jonah has never been given the chance to feel "different" we have immersed him into the Deaf Culture here in our home town. He attends Deaf dances, clubs and has been interacting with Deaf adults. Unfortunately he is the only Deaf child here in our community, so it's hard to have him play with a peer his own age who can communicate fluentl
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That's awesome! Are you hooked up with the Deaf School anyway? Like for camps and stuff like that? And WOW......he's ON PAR with CHARGE syndrome!
 
I thought the same thing as DeafDyke, maybe now that he's a bit older, summer camp may be an option. It sounds like you guys have everything under control -- welcome to AllDeaf :)
 
He has a tracheotomy and a g-tube, so summer camp isn't an option until he is medically more able to do them. It's something that I wish for all the time, and hope that one day they will be able to come up with a medical procedure that will help him.
I've looked into them, and the majority of the camps here include swimming, and other things he cannot participate in due to the medical limitations.
I will continue to look into them every year.
 
jesskavs said:
He has a tracheotomy and a g-tube, so summer camp isn't an option until he is medically more able to do them. It's something that I wish for all the time, and hope that one day they will be able to come up with a medical procedure that will help him.
I've looked into them, and the majority of the camps here include swimming, and other things he cannot participate in due to the medical limitations.
I will continue to look into them every year.
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Awwww too bad. t I wonder if you could see if the Deaf-Blind program at Perkins School for the Blind may know of any resources. I know he's not blind, but I also know they're very experienced with CHARGE syndrome kids.
Perkins - School for Students Who are Deafblind
I'm kind of surprised that they might not think that some kids may not be able to swim or whatever. Some syndromes like Charge and Treacher Collins have trachs, and g tubes....then again high functioning and medically complex dhh kids are kinda rare. Most kids who are medically complex tend to be severe kids.
 
deafdyke said:
Awwww too bad. t I wonder if you could see if the Deaf-Blind program at Perkins School for the Blind may know of any resources. I know he's not blind, but I also know they're very experienced with CHARGE syndrome kids.
Perkins - School for Students Who are Deafblind
I'm kind of surprised that they might not think that some kids may not be able to swim or whatever. Some syndromes like Charge and Treacher Collins have trachs, and g tubes....then again high functioning and medically complex dhh kids are kinda rare. Most kids who are medically complex tend to be severe kids.
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Yes he is quite rare. I have worked hard with him daily since he was 4 weeks old to make sure he was on par. He truly is a gift! He seems to be re-writing the book on CHARGE syndrome, his Dr's at the Hospital for Children are perplexed at how much of CHARGE he has, and yet how little of the CHARGE delays he mentally exhibits. His complexity should render him severely delayed, and yet he is mentally on par, if not advanced in some things. He loves math, and gets all A's. He really is an awesome child.
I don't live near Perkins, but I have contacted a Deaf-Blind school here in Ontario. They cannot help us because my son is not blind. It's all good, we do awesome things here in the summers with him. :lol:
 
I have tried replying to several posts, including this one and another one that I stared about Ice Age; continental drift, and I keep getting a message telling me that a moderator has to approve my posts, and they either haven't been approved, or no one is getting them because that was 2 days ago. Anyone else having this problem?? This is my 4th time re-posting this, as it won't go through, but I've replied other times! UGH, this is frustrating!
 
Thank you!
Any ones know why only some of my posts show up? Why do others have to be approved by a moderator??
 
jesskavs said:
Thank you!
Any ones know why only some of my posts show up? Why do others have to be approved by a moderator??
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Low post count. You need to reply to several non controversial threads and be seen not to be a spammer or a bot.

When you have done that, everything should go smoothly for you.
 
but that's my problem. I am trying to respond, and it will only let me respond some of the time.
I am trying to answer questions in one of my threads, and I can't do that. It's a little bit frustrating.
 
jesskavs said:
but that's my problem. I am trying to respond, and it will only let me respond some of the time.
I am trying to answer questions in one of my threads, and I can't do that. It's a little bit frustrating.
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But say something else here. I think it might take ten posts before you find freedom! :P
 
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