Four new members of the DEAF

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aidanguard

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Hello my name is John and my wife is Jennifer, we both hear as well as our 4-year-old son Jack. We Just recently learned about 6 weeks ago that our 15-month-old son Aidan could not hear. We finally had an ABR and he did not record anything at 85 db, unfortunately, after our son was sedated and 90% through the test the audiologist indicated that she had loaner equipment because her equipment was being calibrated. The loaner equipment did not have the ability to test any further. We understand that he has sever if not profound hearing loss.

I have to admit that I was completely unaware of the amount of soundless people there are in the world. How is it that there could be so many yet I haven’t seen but one deaf lady in my pharmacy? I sell medical equipment, so I meet many people who have lost an ability or two but only one women who lost her hearing. I began to realize that the deaf have their own culture, places to live, learn and socialize. I am so afraid that I will never know my son thoughts in real time. I am afraid he will be lonely in a hearing world. I will learn sign I find it beautiful but feel insecure about my ability to become fluent.

Then there are C.I.'s, I hate the idea of him having his cochlear destroyed and any residual hearing lost not to mention the loss of balance or the surgery itself, and for what? So I could make it easier on me to communicate with him. He really is a very happy baby. Then the questions of learning to speak, write and read English, will high powered H.A.'s be enough with Cued English and ASL or would it be irresponsible of me not to consider C.I.'s. I do not mean to cause any pain for those who made the decision to receive or provide C.I.'s for them selves or a member of their family I am just afraid to make the decision for my son.

John
 
I know it is a tough decision. Follow your heart and feel what is the best for your baby. My parents were going to give me CI, but they felt if something happens, I would hate them later in life. As I grew older, I thanked my dad for making the right decision to let me be the way I am, the way God has made me. And I deal with my hearing impairment for the rest of my life. Start speech therapy early than to have too late, or anything from a book. I know you will do the best for your baby. He is a happy baby and that is what important right now. Good luck! welcome to AD.
 
:welcome: to AllDeaf forum. Well, now you are all hearing except your baby son. You will have a lot to learn about the Deaf Culture and using the ASL to communicate with your son, Aidan. You can talk about any thing you want to say on the threads and get some education of how to raise Deaf baby. I am an old Deaf ( born deaf ) elder from the native reservation. Yes, having the cochlear implant is a no-no for the baby and we all oject that children should not have cochlear implants until they are all grow up if they want to have a cochlear implant like about, oh, twenty to up. That is my opinion of how old should a child get CI. We still don't approve of having CI as it is a surgery. There is nothing wrong with the hearing aid (HA). It is really a lot better than CI. Don't pay any attention to what the people say in the medical business tell you that it is a great way to have a child hear perfect. Not exactly true. But hearing people want their Deaf or deaf /hard of hearing (HOH) to have CI. Hearing people don't know anything about us Deaf/deaf/HOH and get panic about wanting to change us, to fix us. The problem is that it is not going to work and you and your hearing family have to accept his deafness whether you like it or not. Don't worry about your baby and he will be fine. So come on aboard and you can write anything you want to say on the forum or thread. Have fun!! :wave:
 
Restless Heart and Bebonang have said it all. I want to commend you on turning to the deaf community to learn more about your son's world. You are starting in the right place.

Welcome to AllDeaf, and I hope you make many new friends and pick up some valuable information from those who can share with you what it is to be a deaf child......the deaf adults who have lived it.
 
:welcome: to AD!

I applaud you for researching everything not just how to make your son "hearing" as much as you can without learning about Deaf culture and ASL.

I was born with a profound severe hearing loss in both ears and my parents didnt know what to do. They listened to the doctors and audis about not allowing me to be exposed to sign language and the Deaf community. The reason they said that cuz if my parents wanted me to be "normal", I needed to learn how to develop speech skills and speak like a hearing person. So I did successfully but I grew up going to school with all hearing peers and it was very very difficult on me both emotionally and physically (my eyes and brain got so tired daily trying to lipread my teachers and my peers all day and I only got about 30% of what was being said so I missed out a lot!). I became very depressed and lonely most of the time despite having friends. I hid it very well so my parents didnt know what I was going through.

Finally, I learned ASL at the age of 25 and since then I am fully integrated into the Deaf community. I am happy to have good oral skills but I really really resent the fact that I was denied ASL and meeting the Deaf community growing up. It would have made my life so much easier cuz I grew up with serious self-esteem issues. I cant go back to non-signing environment without feeling some anxiety. Just old issues keep haunting me and I try not to let them but sometimes, I just cant.

Dont worry about being insecure about learning ASL...just explain to any deaf person u meet that you are a parent of a deaf child and I am sure you will be welcomed with open arms. You are welcomed here on AD with open arms.

As for the CI route..I cant give you advice because that is your and your family's decision. While you are debating on whether to get your son implanted or not, is he being exposed to ASL?

Good luck with everything and if you have any questions, u can post here or PM me or the other ADers. I'll be more than happy to answer them. :)
 
Thank you for you words my feelings tell me he is going to be all right, when I go into my head I develop fears.
 
aidanguard said:
Thank you for you words my feelings tell me he is going to be all right, when I go into my head I develop fears.
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From having raised a deaf son, I can tell you that those fears are normal. Parents also have fears about their hearing children. It would be my advise to recognize those fears, and then address them through the information about deafness and deaf people that will allow you to put them to rest. You are off to a good start. My own son is 21 years old, and a college student with an A- average. I raised him with ASL and spoken language, using a Bi-Bi approach. From my experience, I would not hesitate to say that your feelings of him being all right are spot on. That doesn't mean there won't be somerough spots, but in the end, all will turn out all right if you simply put his needs as a deaf child first.
 
With open arms, I cannot begin to thank you

Jilli, Shel90, Bebonang, Restless_heart, Secretblend,

Thank you for your thoughtfully responses. I am new to talking this way actually this is my first blog/forum and I only use e-mail sparsely. I suppose this is a start to many different approaches to communicating.

I do feel reassured that I am in the company of experience and not alone in my inexperience. Shel90 I am sorry that you felt alone all those years. The feeling of aloneness is in my belief a reliving of our separation at birth when two were one. I do not think that their is a more painfully experience and I know pain well. I constantly wonder who Adian will connect with other than his family. I look around an do not see allot of options where we live in Duchess County New York and I work in Westchester. It is beautiful here and the schools are great for the hearing, I pray there are sufficient options for him here moving seem daunting now.

Jilli thank you for your advice as a parent it does give me confidence.

Bebonang I feel your advice is true about CI's it should be his choice. I pray I stay strong the pressure is great from the medical field and there are allot of implant patients who have had good experiences although the negatives seem to out weight the benefits. Firstly, he is deaf, that is who he is and with that I know their will be strengths that the hearing are unaware of, implanting too early has to interfere will the development of those strengths. I know ALS will be crucial especially if he is too lonely with the hearing. Connecting to people is the feeling of euphoria that we all live for, that is why the disconnect is so painfull. I pray he will read, write and speak well hopefully cued speech will help.

I thank you all very much taking the time.

John
 
Hi John!
Duchess County New York
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Where exactly is that?


Welcome! One thing I would do is to contact your state's School for the Deaf. I see that you mentioned that you work in Westchester NY. There is a School for the Deaf near Westchester. I can't remember exactly which town it is in, but it IS a school for the Deaf. Virtually all specialized schools have really awesome early intervention programs, that you really can't get in a mainstream educational system.
The debate over CI is tough. However, your son might not need the CI. There ARE kids with "deaf" losses who are hoh with aids.
Not all deaf kids are deaf enough for CI.
Personally, I think if it's VERY clear that your son is receiving little to no benifit from HAs, then opt for CI. However, if there IS some benifit seen, then there's really no harm in waiting til he's a little older, so he can help make the decision. Besides, it's very hard to accurately tell how well a baby or even a toddler can hear. As long as you're on top of things...................
 
Out of an absurd sense of curiousity (none toward the situation but mine own curious nature), how was your son sedated?
 
I am so afraid that I will never know my son thoughts in real time. I am afraid he will be lonely in a hearing world. I will learn sign I find it beautiful but feel insecure about my ability to become fluent.
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I wish more hearing parents of dhh kids were like you. Some parents seem to think that if a dhh kid has oral skills, everything will be perfect and they won't "need" Sign. A lot of dhh kids do tend to have significent social issues in the hearing world. (and they do tend to be swept under the rug by some people)
Don't worry about your abilty to become fluent in Sign. Contact the New York Association of the Deaf. Oftentimes they have mentor programs where you can learn Sign from a native signer. Also the parents who are involved, and make an effort to learn sign, their kids tend to be really high acheivers. One of my neighbors from when I was a little girl was deaf. Her entire family was hearing. But they were fluent in Sign. Jessica ended up going to Gally, and getting a Master's from a HEARING college!
 
Oh John. Contact Fanwood, which is the School for the Deaf in White Plains.
They can help you!!!! It's very lucky that you're in New York, which has GREAT resources for deaf kids. Hopefully your son will be "deaf enough" to attend the school (I find it silly that they have a decible requirement but *shrugs*) Maybe if he has "better hearing" you could argue that you want your son to be exposed to ASL, and to attend a school for the Deaf. Here is the info: New York School for the Deaf - Home
If you're a bit too far away from Fanwood, there are plenty of other NY Deaf schools and programs out there. I know there's a couple on Long Island, as well as two in New York City (Lexington and another one) I think the rest are upstate.
Also join the American Society for Deaf Children.
American Society for Deaf Children
 
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