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southern_momma

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I'd greatly appreciate ANY advice from the deaf community on this situation. I found out today that my 6 year old daughter will possibly loose her hearing in both ears (she currently has severe loss in her left ear) or she may retain some ability to hear sounds but will loose her ability for speech recognition (within the month it will be completely gone in her left ear). A couple possibilities presented to me by the specialists would involve possible progression to her good ear.
I want to set my daughter up for the greatest of success (esp emotionally) so here are my questions for you....
1) What helped you during the process of loss?
2) What did you or a parent do that helped or did not help during the process of loss?
3) Looking back is there anything you are glad was done/not done/ or wish were done?
I appreciate any feedback you are willing to give. Although this is not a certainty for her I want to ensure I do everything I can to help her.... you know... plan for the worst and expect the best!
 
Hi, southern momma. I lost my hearing in adulthood so I can't tell you how your daughter feels. I am a mom,though. Kids that age respond to how you react to a situation. If you treat the deafness as part of who she is and accept it, she will follow your lead. Acceptance and love is what we all want. Your daughter is fortunate to have a mother who is so concerned about her emotional development. Your support will help her adjust. I hope you share with us that your daughter is doing well soon.
 
Thank you... I also have hearing loss myself but not anything as progressive as my daughter... and mine was in adulthood as oppossed to childhood... that has been a HUGE help for my daughter dealing with this as just the way it is. If she does become deaf it definitely isn't the worst thing in the world to happen... technology is great these days, people seem to be more accepting of differences, and there are many other ways to experience and enjoy our world. So, we are kind of "what ever happens will happen people" -- it isn't a big deal in the grand scheme of things. BUT, today after talking with the doctor -- I actually sat and listened to the world and realized how beautiful it can sound and how that has added to my life. And the thought of her not hearing my voice for comfort, hearing "I love you", or hearing me sing her favorite "baby song"... it breaks my heart. I know she will soar through this like no big deal... mommy just has to have a little time to gather my thoughts and make a game plan to best help her "just in case".
Since she is so young I was thinking of associating certain tactiles with emotional experiences -- like a special soft cotton blanket when I do sing to her or something bright and silky during our silly times. Any thoughts if this could help her carry these emotional audial experiences over through other senses when she does loose her hearing? When she is in her 20's and calls me with a broken heart... it will be through typed words... that isn't comforting. I was hoping to have a way that between our typing and her wrapped in her cotton blanket she'd remember the comforting sounds of mommy singing to her. Sappy I know.... but we are a very expressive and emotional family.
 
My daughter is also 6 and she has a rapidly progressing hearing loss bilaterally. She was born hearing, but by age 5, it was severe to profound in both ears. We have chosen to give her a cochlear implant. She now hears very well in the CI "ear". We also use ASL to communicate, because she can understand everything in ASL, while she can't with her hearing loss.

If your daughter is already a spoken language user, she won't "forget" the things you say to her. There is technology that can help even people with a complete hearing loss hear and understand spoken language. Your child is an ideal candidate, since she has heard well and already uses spoken language.
 
southern_momma said:
I'd greatly appreciate ANY advice from the deaf community on this situation. I found out today that my 6 year old daughter will possibly loose her hearing in both ears (she currently has severe loss in her left ear) or she may retain some ability to hear sounds but will loose her ability for speech recognition (within the month it will be completely gone in her left ear). A couple possibilities presented to me by the specialists would involve possible progression to her good ear.
I want to set my daughter up for the greatest of success (esp emotionally) so here are my questions for you....
1) What helped you during the process of loss?
2) What did you or a parent do that helped or did not help during the process of loss?
3) Looking back is there anything you are glad was done/not done/ or wish were done?
I appreciate any feedback you are willing to give. Although this is not a certainty for her I want to ensure I do everything I can to help her.... you know... plan for the worst and expect the best!
Click to expand...

The only thing I can say is that I wish my parents had raised me as a deaf child, instead of hearing. Please be advised; this is my own personal opinion about myself.
 
deafcajun said:
The only thing I can say is that I wish my parents had raised me as a deaf child, instead of hearing. Please be advised; this is my own personal opinion about myself.
Click to expand...

Did you have a progressive loss? What does it mean to be "raised hearing" as opposed to deaf?

Can you give more specific help?
 
Thank you for your opinion... I'd love to hear more about what you mean to have been raised as a deaf child vs a hearing child. I fully understand this is your opinion for your life... but I think we can all learn alot from people who have already been down a similar path.... we don't have to "copy" what the person recommends... but it can only help us understand and take another look at the situation. When you get time please expand on this to help me understand your perspective.
 
Very reassuring... thank you faire jour. It is amazing how far technology has come. I'll have to look into these

As for ASL... I had a rep from the state agency for deaf and hard of hearing children visit and they recommended not using ASL... said it was "outdated" and not used much any more. Is this true?
 
faire_jour said:
Did you have a progressive loss? What does it mean to be "raised hearing" as opposed to deaf?

Can you give more specific help?
Click to expand...

I think deafcajun means that being raised with a hearing loss but treated like a hearing person like being the only one in public school which he or she had no idea what the person is saying in school or other hearing places. They do not provide any accommodations for the Hard of Hearing or Deaf. :hmm:
 
I lost my hearing at aged 2. My parents never realized I was deaf until age 6. They took me to several specialists (doctors, audiologists, therapists, etc), all who insisted that I not be exposed to deaf education, sign language, deaf culture, etc. So, they never signed to me. They never got me interpreters for classes or school. They insisted I use proper grammar and pronunciation and made me try to do it over and over again. In other words, they wouldn't let me write it down when I couldn't make them understand. They insisted that the TV be at a regular volume. So, when I get to college, I failed miserably. I could read nobody's lips. I decided to study sign language and get an interpreter. I started passing. However, being exposed only to the hearing world, I did not know how to assimilate with society or survive in the hearing world. I firmly believe, had they sent me to deaf school, signed to me, taught me about deaf culture, and things like that, I would be in a much better place than I am now.

Please, I ask of anyone who reads this; do not take offense to my post. This is my story and my opinion. I intend to offend no one.
 
I don't see how anyone could be offended by your life experience and opinion... so no worries.

Thank you soo much for sharing. I find it interesting I was told by the state agency ASL is not used much at all so not to pursue it. As for my daughter's school... super supportive!!! (And yes it is a public school). They are getting an FM system put in her class... but will be for the entire class as not to single her out and she can move around freely.

Do you all recommend ASL?
 
Thank you... I will definitely do some research in our area. I've used it with kids before in medical and school situations... so have personally just wanted to learn more... so this would be an opportunity for me to grow some too!!:)
 
southern_momma said:
I don't see how anyone could be offended by your life experience and opinion... so no worries.

Thank you soo much for sharing. I find it interesting I was told by the state agency ASL is not used much at all so not to pursue it. As for my daughter's school... super supportive!!! (And yes it is a public school). They are getting an FM system put in her class... but will be for the entire class as not to single her out and she can move around freely.

Do you all recommend ASL?
Click to expand...

Does your daughter already use spoken language at age appropraite levels? Or is she delayed because of her hearing loss?
 
She has had about a 6 month delay from the start... she has other medical issues (not related to the hearing loss in any way) that caused low muscle tone and impacting her speech. She was caught up within a normal range for a good two years now... we've just monitored her closely with annual evals. However, the past 4 months have shown a slow decline in her speech. More people are commenting that it is getting harder and harder to understand what she is saying - this has come from school officials, family, and in the medical line.
 
southern_momma said:
She has had about a 6 month delay from the start... she has other medical issues (not related to the hearing loss in any way) that caused low muscle tone and impacting her speech. She was caught up within a normal range for a good two years now... we've just monitored her closely with annual evals. However, the past 4 months have shown a slow decline in her speech. More people are commenting that it is getting harder and harder to understand what she is saying - this has come from school officials, family, and in the medical line.
Click to expand...

That is why you should not listen to the State Agency for telling you that you should not use ASL for your daughter and for you if you are willing to learn ASL and communicate with her. Every hearing people whether parents or authority want the deaf or hard of hearing people to learn to speak and read lips with no sign language. This what make us very upset and mad because we need ASL to understand what is going on in any places. Why in the world do hearing parents and authority put too much pressure on us to being like the hearing people? That is why it is not fair like what deafcajun had to go through and still struggling in the hearing world even if he practice ASL and to get an interpreters. :(
 
deafcajun said:
The only thing I can say is that I wish my parents had raised me as a deaf child, instead of hearing. Please be advised; this is my own personal opinion about myself.
Click to expand...

Same here. I wish my parents raised me as a deaf person, not a hearing person. The day I accepted my deafness and learned ASL was the day I found comfort and happiness for the first time in my life.

Good luck!
 
southern_momma said:
Very reassuring... thank you faire jour. It is amazing how far technology has come. I'll have to look into these

As for ASL... I had a rep from the state agency for deaf and hard of hearing children visit and they recommended not using ASL... said it was "outdated" and not used much any more. Is this true?
Click to expand...

Either that rep has a hidden agenda or a liar, it is not true. ASL is the 3rd most used language in the USA after English and Spanish. Iam an ASL user..without it, my life would be terrible and miserable like it was when I was growing up before I finally learned it.
 
southern_momma said:
Very reassuring... thank you faire jour. It is amazing how far technology has come. I'll have to look into these

As for ASL... I had a rep from the state agency for deaf and hard of hearing children visit and they recommended not using ASL... said it was "outdated" and not used much any more. Is this true?
Click to expand...
Not true, we still use ASL. It is everywhere. The state agency does not know what they were talking about.
 
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