Trying to understand what it's like for my son

bchamberlin

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My son Jagger is only 13 months old so we haven't been at this for very long. One of my biggest challenges is trying to get past what it's like for him. He's always so happy and energetic. When will he be aware of sound? When does a deaf person understand there is such a thing as sound? I'm sorry if these are stupid questions but I really son't know where else to turn.
 
Most deaf children are blissfully unaware and do not care to think about it. That's until one day they are peer pressured by kin, society or environmental factors that influences them in their choices to get sound.

If he's happy without sound, there's no point in forcing him to use it. You can wait until he's older so he can make a decision if he wants to fix it or not. Until then, try incorporating methods like ASL. If he personally wants to (for different reasons) speech therapy. If he doesn't want speech therapy, don't force him to go.
 
I did not know that certain things made any sound until I got my first hearing aide. He would be able to feel the sound vibration , is your son deaf or hoh?
You should talk to your baby doctor and have him or her help you find an audiologist that works with babies so they can answer some of your questions.
 
Although dhh people (except maybe for unilateral loss folks) can hear sound, we don't process it the way a hearing person does. We hear the way a deaf person does. Have you heard of people who percieve one sense as another sense? That is what dhh folks experiance sound as. They experaince "sound" as one/two dimensional rather then three dimensional.
Make sense?
 
Most deaf children are blissfully unaware and do not care to think about it. That's until one day they are peer pressured by kin, society or environmental factors that influences them in their choices to get sound.

If he's happy without sound, there's no point in forcing him to use it. You can wait until he's older so he can make a decision if he wants to fix it or not. Until then, try incorporating methods like ASL. If he personally wants to (for different reasons) speech therapy. If he doesn't want speech therapy, don't force him to go.

Thanks for the response. OF course we won't force anything on him to do anything he does't want to. Sometimes it's difficult at this particular age not knowing what he may want etc. Of course it's eventually up to him but until he can make those decisions, aren't we obligated to try and figure out what's best for him now?
 
Thanks for the response. OF course we won't force anything on him to do anything he does't want to. Sometimes it's difficult at this particular age not knowing what he may want etc. Of course it's eventually up to him but until he can make those decisions, aren't we obligated to try and figure out what's best for him now?

Ah, that begs the question: what do you do think is best for him? Language development? Social skills? Ability to follow teachers and do well in class? Easy fluent interaction with his own family members?

that won't happen if you don't use ASL and if you mainstream him. Always keep one thing in mind - speech skills does not equate fluent hearing ability. And the more he's isolated from easy fluent communication, the more it will have an impact on his psyche and the less happy he will become.

That's why I'm saying if your baby's happy, that's a good thing!

Please start learning and using ASL ASAP.
 
Ah, that begs the question: what do you do think is best for him? Language development? Social skills? Ability to follow teachers and do well in class? Easy fluent interaction with his own family members?

that won't happen if you don't use ASL and if you mainstream him. Always keep one thing in mind - speech skills does not equate fluent hearing ability. And the more he's isolated from easy fluent communication, the more it will have an impact on his psyche and the less happy he will become.

That's why I'm saying if your baby's happy, that's a good thing!

Please start learning and using ASL ASAP.

Gotcha. We're doing ASL now actually. He has a therapist that comes to the house once a week and we're using ASL in our home. He has 3 hearing siblings who are also learning. Like I said in a previous post, my wife is better at it than I am. I know the words they just don't come second nature yet.
 
Thanks for the response. OF course we won't force anything on him to do anything he does't want to. Sometimes it's difficult at this particular age not knowing what he may want etc. Of course it's eventually up to him but until he can make those decisions, aren't we obligated to try and figure out what's best for him now?

Mm-hmm, all valid points.
What are your ambitions? Do you know or have results of his hearing loss?
Do feel free to share so that the community can advise you without making assumptions over your ideas or goals. Generally for success in aural events, it is dependent on the nature of the hearing, if hearing aids are of use to him, so on again all dependent on certain facts.

Sign language however, knows no boundaries - anyone can learn.
 
Thanks for the response. OF course we won't force anything on him to do anything he does't want to. Sometimes it's difficult at this particular age not knowing what he may want etc. Of course it's eventually up to him but until he can make those decisions, aren't we obligated to try and figure out what's best for him now?

Yes, indeedy at this point its important to try to bombard him with as many options as possible. Pursue ASL, and aiding/maybe CI and speech therapy. Speech therapy can be helpful... and I know some voice off kids who say they wish they had speech skills....that's why it's important to have both. With the closure of the private oral schools, almost all of the state and public dhh programs will improve their oral therapies will improve. I think you'll be very surprised at the quality of services a deaf school or good program can offer.
 
It seems like you are on the right track and your child is happily going about his business of learning and growing. I do know how hard it is to learn ASL as an adult because I'm late-deafened. Keep practicing and it will get easier. You're giving your child a valuable gift. I wish that my family with hereditary late-deafness used ASL. Then, I would have learned it much younger.
 
When will he be aware of sound? probably as soon as he can hear it. Wether he has some hearing left or from the first time u turn on his hearing aid etc. Now when will he realize the importance of sound? The importance of being able to verbally comunicate? that is a much more important question. This all depends on how you handle your childs education. Im no parent. In fact im only a 20 year old who can only offer you his perspective on how his family handled him.

When i was diagnosed with a hearing disability it was recomended to my mother that i be placed in a school for kids with special needs. My mom fought hard to get me into a public elementary school and succeeded. So there i was, a deaf child thrown to the sharks. Or so everyone thought. The truth is i excelled in elementary school. I got great marks, was the captain of sports teams and won speech contest! and i was quite the ladies man ;). Doesnt seem to bad for a deaf kid huh? Elementary school was a blast and I owe it all to my mother.

DO NOT LISTEN TO ANYONE WHO SAYS ANYTHING LIKE " your kids happy being deaf, teach him ASL and he'll be fine" That infuriates me to the max! How ignorant someone must be to say that! How could you possibly shut such a huge door on a child that isn't old enough to realize the importance of being able to verbally communicate in todays world."you cant teach an old dog new tricks". If you wait till ur child is 10 to have him start speaking chances are his speech wont be nearly as good as it could have been if you pushed it on him at a young age. Your child's speech may not be up to par with someone who can hear well but if the job interview, when he is 20, is between two equally qualified people one of whom cannot speak at all who do you think is getting the job? Yes it its wrong to discriminate but the truth is its going to happen. Alot of people dont even realize im deaf. They think i have an accent! I owe this to the fact that my mom dragged me to the speech therapist i hated so much when i was a kid.

Now we hit high-school ,the days where i truly began to realize the importance of communication, things change. Interaction between peers becomes more and more social and less and less physical like when we were kids. Instead of playing tag with 10 friends, we are sitting in a busy cafeteria yelling over each other. Needless to say it makes following a conversation impossible for a deaf/hoh person. My parents didn't expose me to the deaf world at all. I grew up feeling like i was the only young person who was deaf and the only other people who had the slightest idea how i was feeling were old farts. I slowly became more isolated and fought depression constantly. I had no one to talk to and would keep my feelings bottled up until every once in a while id break down and cry on my mothers shoulder.

That was my parents mistake. They didn't realize they closed the door to the deaf world on me. They were so busy trying to keep me oral they didn't stop to think that i might feel isolated. Now that i am more mature i am starting to seek out other hard of hearing people in my area but i cant shake the norms. I cant see myself signing in public with other deaf people it weirds me out. Its funny how i can be such a hypocrite but it was how i was raised. I often hate myself for being deaf and am still currently fighting constant depression. A normal kid stuck with a couple of broken ears. A mind with so much to offer no one to easily communicate with...

My point is open as many doors for your child as possible. I thank my parents for having me mainstreamed because i can function quite easily in society. I thank them for pushing me to use my ears and voice as much as possible as a child. I thank them for telling me i am normal. Now you can learn from their mistakes as well. Have your kid learn both the spoken language of english as well as ASL. Expose your child to the deaf community so when he is older he does not face the same feelings of isolation as i do.

I hope this helps you to understand how ur child may be feeling one day in the future
lucas
 
Mm-hmm, all valid points.
What are your ambitions? Do you know or have results of his hearing loss?
Do feel free to share so that the community can advise you without making assumptions over your ideas or goals. Generally for success in aural events, it is dependent on the nature of the hearing, if hearing aids are of use to him, so on again all dependent on certain facts.

Sign language however, knows no boundaries - anyone can learn.

As far as loss, he's completely 100% deaf. He hears nothing. We've been through a battery of tests at John's Hopkins and the results have all been the same. The CT scan he recieved shows his cochlea are not completely formed. In fact, his entire inner ear anatomy is malformed. He has an MRI scheduled next week to see if he even has an auditory nerve. Even with the hearing aids he hears nothing at all.
 
Lucas, you're still young. Even if you did master speech very well, it does not boost your chances of employment. Not at all. You're still in school and thus, quite sheltered.

You will see what I mean when you graduate from college.
 
Lucas -

I can't thank you enough for taking time to share your story with myself and of course others. I'm 42 and honestly felt like I could handle anything. Then when Jagger was born everything came crashing down. He has some other health issues but we're working through them. His deafness has been hard to deal with but I'm also amazed at how easy it is to accept. Not sure if that makes sense. If they tell us next week he doesn't have an auditory nerve and will NEVER hear, we'll be fine. I'm not saying we won't shed a tear but we'll be fine. We've accepted him for who he is and we'll do whatever we can to give him the fullest lift possible. If that means mainstream school, deaf school, ASL out the wazoo... we'll do what ever. If there is a chance that inplants will help him, it's worth looking into. With his different inner ear anatomy there could be an increased risk of a problem with the surgery. If we find that's the case, then we'll most certainly elect not go forward with inplants.
 
Lucas, you're still young. Even if you did master speech very well, it does not boost your chances of employment. Not at all. You're still in school and thus, quite sheltered.

You will see what I mean when you graduate from college.

actually i am not currently in school, i dropped out of my program half way through the semester and decided to travel so i lived/worked in whistler village for about a year then moved back home and have worked several other jobs. Sorry, i strongly disagree with you in regards to the whole speech and improved employment issue, but this is not a place to debate. We can continue that in the debate thread. As i said i was sharing my views/opinions on how my parents raised me to give insight to someone who may or may not need it. that is all.

ps chamberlin with parents like you guys he cant go wrong
 
actually i am not currently in school, i dropped out of my program half way through the semester and decided to travel so i lived/worked in whistler village for about a year then moved back home and have worked several other jobs. Sorry, i strongly disagree with you in regards to the whole speech and improved employment issue, but this is not a place to debate. We can continue that in the debate thread. As i said i was sharing my views/opinions on how my parents raised me to give insight to someone who may or may not need it. that is all.

ps chamberlin with parents like you guys he cant go wrong

ok. you're still young. Look up employment statistics of deaf people, whether they are signing, oral or both. My advice? Learn a trade so you can be your own boss. It's inordinately difficult for a deaf person to get hired.
 
well i've had no problems finding jobs yet so i don't feel like being a statistic. I will keep your advice in the back of my mind however.
 
Lucas -

I can't thank you enough for taking time to share your story with myself and of course others. I'm 42 and honestly felt like I could handle anything. Then when Jagger was born everything came crashing down. He has some other health issues but we're working through them. His deafness has been hard to deal with but I'm also amazed at how easy it is to accept. Not sure if that makes sense. If they tell us next week he doesn't have an auditory nerve and will NEVER hear, we'll be fine. I'm not saying we won't shed a tear but we'll be fine. We've accepted him for who he is and we'll do whatever we can to give him the fullest lift possible. If that means mainstream school, deaf school, ASL out the wazoo... we'll do what ever. If there is a chance that inplants will help him, it's worth looking into. With his different inner ear anatomy there could be an increased risk of a problem with the surgery. If we find that's the case, then we'll most certainly elect not go forward with inplants.
WIth the malformed cochlea, the implant has a vastly less chance of working.

You may waste a great deal of time if you go that route because you are going to need to make up for time lost by the time you accept him as a deaf child.
 
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