Any advice for hearing mom w/deaf baby?

Isaacsmom

Isaacsmom

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Hello everyone!
I am not deaf, but my husband and I just had our first son who is diagnosed with severe/profound hearing loss. We are trying hearing aids on him but arent sure if they are working because he is only 9 months old. We are trying to learn sign and are pretty overwhelmed. The doctors are telling us that we should consider CI, but we feel that we don't want to subject our baby to the surgery and all the therapy involved. Plus he is is so happy how he is. Does anyone have any advice for us? We don't know anyone in the Deaf community yet except the lady from early intervention services that comes to our house every week...but she is an interpreter. No one seems to give us any advice or resources on how to learn sign. Please let us know. We are very interested in learning to communicate with our beautiful son. Thank you so much!
 
Hi Issacsmom:)

I know some people from this AllDeaf who can help you. You sound like you accept that your baby is deaf which is wonderful. Please know that God made your son deaf for some reasons.:)

Speaking of CI, it is very sticky. Most deaf people don't like the CI. Most hearing parents like CI that they like to have the doctors to "install" the CI in their kids' heads. It makes the hearing parents to feel better. But look at me...I am 40 yrs old and am deaf since birth. God made me deaf for some reasons. I am very happy. My hearing parents never made me think that I was different. That's why I was always a very happy child all in my life.

About hearing aid, you said it seems not working well for your son. I can tell you. My hearing loss is just like your son since birth - severe/profoundly loss. My parents put the hearing aid on me when I was a year old and I did not remember but my best remember when I was like 1 year old was very visual and my parents showed their smiles at me and this is what I knew how much they love me very much. That's what they made me very happy baby. And then when I was about 4 years old, I started to hear the sounds. Then I wore two hearing aids all in my life. I can hear people talking, telephone ringings, dogs barkings, tv, crushing on dry leaves outside, kitchen making noises like pans, etc, babies crying, water running, etc. Really, I don't desire to get a CI. I remembered when I was 13 or 14 years old, my parents told me about CI and I told them "NO".

There are two deaf schools in Pennsylvania. Western Pennsylvania School for the Deaf is in Pittsburgh, PA and it is a great school. Pennsylvania School for the Deaf in Philadelphia is fair.

I really want to tell you that your son will be just fine - many deaf people are successful - very happy - go to college like NTID in Rochester, NY and Gallaudet University in Washington, DC.

If you want more infromation from me, you can pm me.:)

Momoftwo:)
 
Isaacsmom said:
Hello everyone!
I am not deaf, but my husband and I just had our first son who is diagnosed with severe/profound hearing loss. We are trying hearing aids on him but arent sure if they are working because he is only 9 months old. We are trying to learn sign and are pretty overwhelmed. The doctors are telling us that we should consider CI, but we feel that we don't want to subject our baby to the surgery and all the therapy involved. Plus he is is so happy how he is. Does anyone have any advice for us? We don't know anyone in the Deaf community yet except the lady from early intervention services that comes to our house every week...but she is an interpreter. No one seems to give us any advice or resources on how to learn sign. Please let us know. We are very interested in learning to communicate with our beautiful son. Thank you so much!
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Don't let the doctors pressure on you to get CI for your son. It should be your son's decision whether he wants a CI or not so leave it up to him when he grows older.

It would be wonderful if you and your husband learn to sign to communicate with your son. You could check around to see if there is a sign language class in your community. If there is one then you might want to consider to enroll.
 
We feel against CI. The doctors gave us videos showing only success stories. But we know there have to be many people that have them that dont use them or they dont work that we dont know about. We accept Isaac and want to help him be the best he can in life. We heard there is a lot of speech therapy for CI patients-3 or 4 times a week and that wouldnt leave much time to have Isaac be a kid. Are there any videos or DVD that can help teach sign? The books are kinda hard to understand.
 
Isaacsmom said:
We feel against CI. The doctors gave us videos showing only success stories. But we know there have to be many people that have them that dont use them or they dont work that we dont know about. We accept Isaac and want to help him be the best he can in life. We heard there is a lot of speech therapy for CI patients-3 or 4 times a week and that wouldnt leave much time to have Isaac be a kid. Are there any videos or DVD that can help teach sign? The books are kinda hard to understand.
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Hi,

Exactly!! CI doesn't work for some deaf kids. Exactly, it wasted their time - let them "kid" like enjoy, exploring many adventures in their life - fun and enjoy.

WPSD has ASL class. I was a student at WPSD. Where do you live?

Momoftwo
 
Hello Issacsmom,

Here is a webiste address that may be of interest to you.

http://www.cuedspeech.org/default.asp

I have attached the names of the instructors in Pennsylvania. They would be more than happy to assist you with any questions that you have.


Pennsylvania

Bridgeville

Lynch, Catherine
220 Horseshoe Circle
Bridgeville, PA 15017-1110
(412) 491-9761
Cst4asl@aol.com


Uniontown

Kipila, Betsy
332 Virginia Circle
Uniontown, PA 15401
724 430-0850
blkipila@yahoo.com
 
Hi Isaacsmom,

It is difficult for many people when they find out they have a deaf baby. I can relate, my parents went through the same thing and what they tell me of those early years sometimes surprises me. They love me dearly and I appreciate that.

Momoftwo is right, there are many wonderful, successful deaf people. I know of deaf alumni of not just Gallaudet, RIT, and CSUN, but also Harvard, Princeton and Yale.

It is very difficult to navigate the options available as a parent of a deaf child because the subject is so emotionally charged. I offer not my opinion (which is centered on my upbringing: oral with the introduction of ASL near my teens) but a list of resources available to you.

You may find this site useful:

http://www.entnet.org/healthinfo/hearing/hearing_loss_communication.cfm

Edit: Oh, I see what you are asking for. Why not try sign language clubs at the nearest college or institution? I find that many places have strong sign language clubs. Plus, if you're also near a greater metropolitan area, there are many deaf and sign groups. You can find a bunch on groups.yahoo.com.
 
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old fashion of hearing aids my mom put me to wear that when I was 6 months old baby... Glad my mom didnt put me to use CI when I was born deaf. then at age 5 yrs old wear new hearing aids till now



when my mom thought I am hearing till 2 weeks later found out i am deaf on christmas day and dont know what to do so she took me to nursey school and she took learn sign lanauges same time went to nursey school ..

maybe can take your son and you (parents) go to asl class to learn sign lanauges?
 
Thank you all for writing back. What is the difference between cued speech, oral and asl? Do most deaf use asl? There seems to be so many choices.
 
Hi Isaacsmom,

Here's a small primer. I hope I am of some help! You are more than welcome to PM me anytime.

ASL:

ASL is the natural language of deaf people. It is structured very differently from English, and this has been a strong source of controversy in bilingual-bicultural education. Connie Mayer and Gordon Wells published a scholarly paper in the Journal of Deaf Studies and Deaf Education questioning how well ASL facilitates English learning (See their paper: http://jdsde.oxfordjournals.org/cgi/content/abstract/1/2/93). Conversely, other people like Brenda Schick of the University of Colorado at Boulder argue that ASL can be used to encourage English learning.

There is no ultimate consensus on ASL for English learning and professionals and academics continue to debate bitterly. One of the biggest problems of ASL is that parents do not learn it very well and often only sign in "incomplete" and broken ASL to their children despite their best intents. It's a lot like trying to learn French in a few short years while living in America with few French people around. This difficulty inhibits parent-child communication.

One of the best things about ASL is that it contributes greatly to a child's self esteem and sense of social identity. That is a VERY big thing and should not be ignored.

Oral communication:

Oral communication has a long history. Notably, it is used in the hopes that the deaf child will be capable of some verbal communication. Idealistically, this sounds good. The problem is that oral communication standalone (without auditory or other supplementation) is very difficult and can be very taxing on the child. Many parents attempt to integrate some oral training with other methods. I've seen wonderful parents teach their kids both oral techniques and ASL. The danger is that oral techniques sometimes lead to unrealistic expecations, and this again taxes the child.

Cued Speech

Cued speech is a system invented by Dr. R. Orin Cornett (recently deceased). Using a few handshapes, it is designed to make non-visible speech sounds easily accessible to deaf children, thereby making the process of lipreading very simple for the child. This offers the child almost immediate access to the language of the parents and facilitates communication greatly.

The biggest advantage of this system aside from the communication access that is available for the parents and their children is that the system is very easy to learn. It takes as short as a day for the dedicated parent and mastery follows shortly thereafter. The deaf child has access to the culture and traditions of the parents almost immediately in life. This is an excellent tool for learning and development.

The biggest disadvantage of the system is that people will not cue in general society. There are many workarounds, but most people who use cued speech I know end up with auditory supplementation (like hearing aids) and import their skills from cued speech. They also use ASL and integrate very well into mainstream culture.
 
vocabulary to me is the biggest thing. Work hard
on building your childs vocabulary. one suggestion
I have often heard but did not use is putting words
on cards and then attach them to everything in your
home.

For instance you would have one on your Fridge,
couch, chair...ect that show the word on the card
that belongs to the item you put it on.

Now what ever caused your childs hearing loss
could have also cause other problems you might
not be aware of. With my own daughter we did not
know she had an eye problem until the 4th grade.

All her eye tests came back 20/20 so we thought
everything with her eyes was fine. She struggled with
reading and spelling to the point where I finally told
the school that there was something wrong. My daughter
would study all week for a spelling test but by the time
Friday rolled around she would always get a D on the
test.

During her IEP meeting toward the beginning of her
4th grade year I put my foot down and demaded answers
about my daughters progress in school. We set a school
record for the length of an IEP meeting {just short of
4 hours}.

They agreed to do some more tests and soon discovered
her eyes weren't working together. If you took a pencil
and held it 8 inches away from her the brought toward
the tip of her nose the eyes should both come in to look
at the pencil. Hers didn't, they both went to the right.
If you took a pencil and held it out 6 inches from one side
of the head and slowly brought it out in front and moved
it to the other side the childs eyes should follow the pencil
smoothly as the pencil moves. Hers did not. They would
skip or jump.

What this all meant was when she was reading she
would skip letters, whole words, and sometime sentences.
While your child is to young for this kind of test I would
keep this in mind for the future.

About a month after this was discovered we got are child
into a program to deal with this problem. Within 4 months
she had improved so much she had her spelling words
memorized by the 2nd day of the week and all her grades
shot up. I wished we had known about this earlier because
she is still playing catch up even in the 9th grade because
of all the years with the eye problem before the 4th grade.
 
Issacsmom,

Untimately, you will need to find what works best for your family.


The biggest disadvantage of the system is that people will not cue in general society.
Click to expand...

Personally, I do not see this as a disadvantage. In all honesty the general public does not use ASL either. The benefit of being a CE/CS user is that you will already be able to use read and write.

Learning a second language, whether it be Latin or German or ASL, is not unheard of for successful cue users.
 
I have a CI and I understand about the concerns of having a child implanted with one at such an early age. Yes, there are pros and cons on when a child can have a CI -- based on the decision of the parents or the child him/herself.
Best thing is do some research on cochlear implants, see/hear both sides of successful and failed cases of CI's...risks of surgery and benefits of the CI in the long run.

I believe that it's best to wait until the child's old enough to understand what a cochlear implant is and decide from that point on. I realise that deaf children implanted at a very early age can greatly benefit the maximum usage of the CI, but it also depends on whether they'd be happy and willing to go through surgery and learn to hear with eusthasium, etc.
 
Hi Isaacmom,
Welcome to AD. I hope you'll find the answer you're seeking.

Momoftwo mentioned two school for deaf, but there's a couple more, I believe, called Scranton State School for Deaf. Another's a private school.

Re: hearing aids. It takes time for your son to get used to wearing them and longer to learn how to listen. You'll know more in the years to come. He can also learn speech if you prefer.

ASL's a good way to start with. It'll take you guys years to learn. So don't feel overwhelmed. :)

Good luck

Cheers! :wave:
 
Everyone has brought up VERY good points! Oligarchist.....thanks for mentioning the downside of oralism. Too many descriptions of oralism don't adquatly describe the downsides of oralism.
Isaacsmom, the debate really is no longer about methodology any more. Most oral as kids do learn sign eventually, as a second language. It's more about which language will be a dhh kid's first language.
It's great that you're so accepting of Sign! Way to go!!!! Some hearing parents really are not eager about learning sign. It's nice to see a parent being enthusatic about learning Sign.
One thing you should do is to contact the Penn Association of the Deaf. They may have a mentor program where Deaf adults come to your house to teach you Sign. Also the American Society for Deaf Children.....Lemme find and post links for you!
As for the CI debate.......I think some audis are jumping on the bandwagon a little too soon with some deaf babies. It really is hard to tell if hearing aids are really helping a deaf baby. Every hearing parent of dhh kids will tell you that they played "Now I hear you, Now I don't" as babies. I DO think that CIs can help the babies who don't significently benifit from hearing aids. There is actually even a type of loss called auditory nereopathy where hearing aids don't help at all. CI is OK in those instances. But some people are promoting it like it's the LATEST GOTTA HAVE gadget!
 
We are being told that our son is a candidate for CI. But the doctors arent sure why he is deaf. I had no complications and no-one else in our families are deaf. He passed his newborn hearing screening (OAE test) but just barely and had no response to ABR test up to 100 db (that is as high as the equipment went so we aren't sure if he has any response above that).I noticed that he was very visual at about a month old and didnt respond when i would talk to him or sing to him when he was sleeping. He would only wake up if I touched him. So we had more tests done. CAT scan etc. The ENT was not a nice doctor. He just said Isaac had nerve damage. I dont know if it is the auditory nerve or hair follicles in the cochlea. I do know that God is in control and that Isaac has a purpose and is perfect in our sight. We just want our son to be happy. I have heard that CI restricts many activities like sports and static from going down sliding boards can damage it. I will do everything in my power to ensure he has every opportunity to learn and grow. CI are just scary to me. I mean they cut open a baby's head and drill a hole in his skull! Why would anyone do that to a helpless baby? Do CI really benefit that much?
 
Hi Issacsmom,

You said
"I mean they cut open a baby's head and drill a hole in his skull! Why would anyone do that to a helpless baby? Do CI really benefit that much?"
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I know!! I don't understand how awful it is when the parents decided to want to have the CI in their babies' heads. It's really scary. I will never do that to my baby if I had a baby right now. No thanks!

No one can tell you what to do with your baby. Listen to your heart. Don't listen to your doctor. Listen to your heart. Let God be guided you what you have to do for your son. Hearing aids are very safe - no surgery.

Enjoy every moments with your baby!:)
 
http://www.deafchildren.org/home/home.html.......American Society for Deaf Children.....a GREAT resource for dhh kids!
Oh, and it's great that you reconize that going oral-only is a little too intensive. Some kids who are functionally hoh do well under this methodology, but I really do think that most of the oral with CI sucesses are from families that push hyperprogramming as a lifestyle.
Does your son appear to hear anything with aids? I think some severe-profounders may benifit as much from body worn aids as a CI. (like the ones who get SOME word reconition with BTE aids)
Also.....don't panic. I know some docs push EARLY EARLY intervention.....but to tell you the truth, I think that exposure to sound as an infant isn't that big of a deal. Most of us who post here weren't exposed to sounds as babies (I didn't get my aids until I was THREE!) and we've done fine!
 
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