Hearing mommy of newly diagnosed deaf son!

Hi and welcome to AD. I am a hearing father of a profoundly deaf son. He was deafened by menengitis when he was 18 months old. Due to ossification we were told that if we did not decide to go with a CI the window of opportunity would close as one of his cochleas was malformed. We opted to go with the CI and unfortunatly it was of no benefit. One thing to remember with a CI is that it will not be beneficial in all cases and the success rates provided by the medical community are skewed and bias.

It is a decision that should not be taken lightly (not that I am suggesting you are doing that) and I wish you and your family all the best. The only thing I would add is to continue with sign language regardless of your decision. The most important thing is to be able to communicate with your child.
 
I am having a problem here! You stated you are using an audiologist at the St. Louis Children's Hospital and need to know more information on the C.I. Then why have you not been referred to St. Joseph Institute for the Deaf?? This is the best school in America for a child born with hearing lost and it is in your backyard of St. Charles, Mo.
Best you make arrangements to go by and speak to the St. Joe staff before you do anything at all. Good Luck.
 
rockdrummer said:
Hi and welcome to AD. I am a hearing father of a profoundly deaf son. He was deafened by menengitis when he was 18 months old. Due to ossification we were told that if we did not decide to go with a CI the window of opportunity would close as one of his cochleas was malformed. We opted to go with the CI and unfortunatly it was of no benefit. One thing to remember with a CI is that it will not be beneficial in all cases and the success rates provided by the medical community are skewed and bias.

It is a decision that should not be taken lightly (not that I am suggesting you are doing that) and I wish you and your family all the best. The only thing I would add is to continue with sign language regardless of your decision. The most important thing is to be able to communicate with your child.
Click to expand...

:gpost: I agree 100% Rockdrummer...
 
Waltersfam07 said:
We as a family are currently learning ASL and feel our son is perfect just the way he is. However we want to make the best decision for him! Any opinions, testimonies, trials and tribulations are greatly welcomed! We want to make the most informed decision for our precious baby boy! Thank you all in advance I just feel at a lose and so frustrated with the lack of resources available.
Click to expand...

Aweome attitude, tough choice !

I can only offer some of my experiances in hopes they might help it be an informed choice. I'd suggest waiting long enough to get your son's input on whether he wants a CI.

I was diagonosed with hearing loss when I was in HS, but looking back, it's easy to spot clues that the loss existed before i was in kindergarten. I got my first hearing aides at 17. I was raised oral, mainatreamed, as if i was a hearing person.

I would have gotton MUCH better grades in school, if I could understand the teachers during class. If my teachers had signed perhaps I wouldn't have missed more than half the lectures. My spelling grade would have gone up if there was an option other than, "you spell it like you say it". ( I did spell it like I said it, HONEST !)

I would have been teased and bullied less, if I had gone to a Deaf school and been able to understand what the other children were saying. I'd have made more friends if communicating with them in ASL was an option.

When I got the HA's, it was quite a shock ! EVERYTHING made noise ! Scared the bejebbers out of me! And everyone expected me to be able to hear perfectly and know what those noises were! that might be a point for getting the CI early but...

I couldn't go swimming because I couldn't wear the HA's in the water. Sports was right out because either I was afraid of breaking the HA's or I wasn't afraid enough and DID break them. Which lead to NOT having them, which was a nightmare ! (Well, it was at the time)

There were alot of things i couldn't do because of the Ha's and situations where they were more of a curse than a blessing. I suppose CI's are similar only more extreme.

Could go on but this post is too long already.:giggle:

I'd say, wait and get to know the kid and then make the decision together. maybe in the meantime you can give him the best of both worlds.
 
Waltersfam07 said:
Wow! Thank you all so much for all of your insightful information! We just want to make the most inford decision we can for our son, so everyones insight is greatly appreciated! Deafdyke we tried to contact MSD shortly after he was diagnosed, but got no answer or reply (it was during summer months though). We are currently seeing audiologist with St.Louis Childrens hospital. GrendelQ I would like to hear about your experience. I have quickly learned that this topic can be a sore subject for some, and I can see points from both sides. We strongly believe in ASL and believe no matter what our decision ASL will always be apart of our family. Faire jour I would be greatful to hear more of your experience, we have been told waiting would leave pur son with little to no benefit from waiting until he is older and able to make the decision on his own. Sarfarigirl2011 our son currently only has HAs which he hates (I thinks it's just his age still too little to understand them) with his HAs in he hears at 50db still not loud enough to hear spoken word, therefore they believe he will be a canidate for CIs.
I am so excited to have a place like this, I am surrounded by so many people who have NO idea what we are going through. This brings great hope to me! Thank you thank you!
Click to expand...

wow, that's some nutty stuff!
I had never done the hating the hearing aid part, ever as a baby! I loved them and enjoyed it :D
 
wavedancer said:
Aweome attitude, tough choice !

I can only offer some of my experiances in hopes they might help it be an informed choice. I'd suggest waiting long enough to get your son's input on whether he wants a CI.

I was diagonosed with hearing loss when I was in HS, but looking back, it's easy to spot clues that the loss existed before i was in kindergarten. I got my first hearing aides at 17. I was raised oral, mainatreamed, as if i was a hearing person.

I would have gotton MUCH better grades in school, if I could understand the teachers during class. If my teachers had signed perhaps I wouldn't have missed more than half the lectures. My spelling grade would have gone up if there was an option other than, "you spell it like you say it". ( I did spell it like I said it, HONEST !)

I would have been teased and bullied less, if I had gone to a Deaf school and been able to understand what the other children were saying. I'd have made more friends if communicating with them in ASL was an option.

When I got the HA's, it was quite a shock ! EVERYTHING made noise ! Scared the bejebbers out of me! And everyone expected me to be able to hear perfectly and know what those noises were! that might be a point for getting the CI early but...

I couldn't go swimming because I couldn't wear the HA's in the water. Sports was right out because either I was afraid of breaking the HA's or I wasn't afraid enough and DID break them. Which lead to NOT having them, which was a nightmare ! (Well, it was at the time)

There were alot of things i couldn't do because of the Ha's and situations where they were more of a curse than a blessing. I suppose CI's are similar only more extreme.

Could go on but this post is too long already.:giggle:

I'd say, wait and get to know the kid and then make the decision together. maybe in the meantime you can give him the best of both worlds.
Click to expand...

same with me, the swimming part is a challenge since my gym class is doing a swimming unit in the spring but hey, what are lip reading for???? *lip reading is ALWAYS helpful to me without my Gaias* :)
 
Waltersfam07 said:
Thank you all again! I have posted some more in depth concerns and questions in the HA and CI form! I hope the is the CI circle you had mentioned HHIssues?! Thank you all for all the positive incouragement, it gets tough when you are surrounded by so much negativity and family opinions! Adamsmomma we totally agree with the why risk if it's not garunteed!?! You were very positive and encouraging Thank you!
Click to expand...

My mom encountered negativity from people when my brother couldnt develop speech skills like I did when we were kids. Well, my brother just graduated with his Master's and is a fine young man. Those who criticized my mom then had to take a big gulp because she and my brother showed them wrong. :)
 
Sarfarigirl2011 said:
wow, that's some nutty stuff!
I had never done the hating the hearing aid part, ever as a baby! I loved them and enjoyed it :D
Click to expand...

When I was a kid (preschool - 3rd grade) , I had to wear a bodyworn FM. It was huge. I hated it. I was the only deaf in school too, and I had to wear it in front of hearing kids


It looks exactly like the picture on the far right (beige one) :http://www.alldeaf.com/512550-post30.html (btw, does anyone know what brandname and model this is?)

(GrentelQ, this is why they didn't want me in gym before they decided I could wear my BTE)

I stopped wearing it when I was in fourth grade and it was no more FM. I wore my BTE in school.

btw, I am profound deaf since birth without CI nor sign language. Just plain old speechreading method and hearing aids.
 
Sarfarigirl2011 said:
same with me, the swimming part is a challenge since my gym class is doing a swimming unit in the spring but hey, what are lip reading for???? *lip reading is ALWAYS helpful to me without my Gaias* :)
Click to expand...

You go Girl !

I go swimming everyday, now that I don't have the HA's. A BIG part of it was the Fear. Mostly Fear of Not having the HA's. It was suddenly very easy to get over that fear once I didn't have a choice, lol. Lipreading helps.

Good luck with your swimming, I'm still learning how to backfloat again :giggle:
 
Welcome to AD! You can read all of the CI threads at your convenience. I'll just wish you and your family the best. :wave:

I think that Rampratt is referring to a perceptual hearing loss. I have perceptual hearing loss and it's not a matter of comprehension. Physically, I cannot hear sounds without distortion. Somehow my nerves are damaged. I don't hear some sounds and the sounds that I can hear are distorted. This has nothing to do with intelligence or comprehension. It's like being in a bizarre world where everyone is talking to you through a fast food drive-though menu. :giggle:
 
wavedancer said:
You go Girl !

I go swimming everyday, now that I don't have the HA's. A BIG part of it was the Fear. Mostly Fear of Not having the HA's. It was suddenly very easy to get over that fear once I didn't have a choice, lol. Lipreading helps.

Good luck with your swimming, I'm still learning how to backfloat again :giggle:
Click to expand...

thanks!!!!!!!! I love to swim
 
deafgal001 said:
if one doesn't qualify for CI or CI didn't work for them for whatever medical reason, tough luck, huh? That's why I say the more hearing doesn't equal more success in life.
Click to expand...
Having less hearing doesn't exactly equal more success in life either. If anything, there are also some disadvantages to not having more hearing...
 
HHIssues said:
Having less hearing doesn't exactly equal more success in life either. If anything, there are also some disadvantages to not having more hearing...
Click to expand...

relying on CI only have disadvantages too. first of all you probably can't be a air traffic controller.. or a marine biologist (can't wear your CI processor all the time, you have to do without CI, but they can't go deep diving anyhow with the internal implant)
 
deafgal001 said:
relying on CI only have disadvantages too. first of all you probably can't be a air traffic controller.. or a marine biologist (can't wear your CI processor all the time, you have to do without CI, but they can't go deep diving anyhow with the internal implant)
Click to expand...

A CI, HA, eyeglasses, etc., all require some extra consideration, but there are very few true limitations just because you are deaf, or deaf with a CI or HA:
Heather Page, University of North Carolina at Wilmington
Heather, a sophomore at the University of North Carolina at Wilmington, was diagnosed with severe-to-profound hearing loss at age 3 and received a Nucleus cochlear implant when she was 16. Heather is working toward a degree in marine biology and environmental studies within the nationally-recognized marine biology program at UNCW, and pursuing her passion for music as concert master of the clarinet section in the UNCW Wind Symphony.
Click to expand...

While I usually consider eyeglasses to be more similar to hearing aids, because there's no internal component /surgery to consider at the start of the process, when it comes to day to day activities, having a CI is very similar to wearing eyeglasses. You can either take them off when you swim or play rough sports or you affix them more firmly with a band and water protection. Not a big deal.
 
My daughter gets good benefit inspite of being implanted so late because she had a progressive loss. She was born hearing and lost her hearing over the next 4 years.

If you want your child to develop spoken language skills through listening, I would recommend a CI (two would be even better!) as young as possible. If it is done before 18 months, the research shows that kids catch up to their hearing peers.
 
faire_jour said:
My daughter gets good benefit inspite of being implanted so late because she had a progressive loss. She was born hearing and lost her hearing over the next 4 years.

If you want your child to develop spoken language skills through listening, I would recommend a CI (two would be even better!) as young as possible. If it is done before 18 months, the research shows that kids catch up to their hearing peers.
Click to expand...

Excuse me? Many of us without CIs were able to develop spoken language. :roll:
 
shel90 said:
Excuse me? Many of us without CIs were able to develop spoken language. :roll:
Click to expand...

I thought your argument was that many kids couldn't develop spoken language and that they fell behind....

ANYWAY, I clearly said "through listening", and if a child can not hear spoken language, they can not understand.
 
Back
Top