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Emily Member |
posted 05-27-2001 12:43 AM
 
Hello everyone. I stubbled upon this message board during a search for information on cochlear implants. I have never posted anything on a message board or talked in any chat rooms, so this is new. I am a new mom of a beautiful 3 month old daughter named Tayler. Tayler was born deaf. She failed the hearing tests given in the hospital after she was born (forgive me if I don't know the correct term for the hearing screenings). At 2 weeks old the audiologist retested her and she failed to respond at all. They diagnosed her as having profound bilateral hearing loss. As I said she is now 3 months old and has had her hearing aids for a month. However, I really don't think she's getting any significant help from them and the audiologist seems to agree. I am looking for any information that more experienced parents may have to pass on. My husband and I are researching the cochlear implant. Any wisdom to pass on regarding your experience with the implant would be helpful. Just any words of wisdom at all about anything would be great. A little info about our family. Tayler is our first child and a miracle after trying for 3 years and being told we would never have children of our own. She is absolutely wonderful. I am a social worker and that helps to know about some of the resources out there, but our audiologist has been great with linking us to community resources as well. Her daddy, Lloyd, works for Boeing and is a super dad and husband. Tayler is in a great program with our school district. She has a in-home teacher that will have weekly visits with us until she is 3 and then will help transition her into preschool. We also have a in-home ASL tutor that works with us weekly teaching us and grandparents ASL. I think we are really fortunate to have these people and programs available to us! Being a new mom is scary enough, but this additional challenge comes with some tough decisions. Just looking for some advice/viewpoints/experiences. Much appreciation to anyone that responds. Thanks, Emily IP: Logged |
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Paula Moderator |
posted 05-27-2001 02:23 AM
Hi Emily, Welcome to HearingExchange! I'm so glad you found us, and even happier for you that Tayler's hearing loss was diagnosed so early! Children as young as 12 months of age can receive a cochlear implant. I also read of a recent account where the child was only 10 months old. The younger the child is implanted, the better off a child usually is if they are going to learn to speak and communicate orally. Here are some suggestions for you: Read my article, "My Child Has a Hearing Loss...What Next." It lists various resources that will be helpful to you. You can read it here: www.hearingexchange.com/articles/mychild.htm Get a copy of "Choices in Deafness" by Sue Schwartz. It discusses different ways deaf and hard of hearing children can learn to communicate. Even profoundly deaf children can learn to talk. (My daughter does and she was diagnosed late for her hearing loss.) This book can be ordered through our bookstore at: www.hearingexchange.com/bookstore/index.htm Our Resource Directory lists several websites published by people who received cochlear implants or parents of children who have gotten them. www.hearingexchange.com/resources/Personal_Web_Pages/ I also recommend joining some of the cochlear implant listservs where people discuss how they are doing with the CIs and you can ask questions. A list of some of them can be found here: http://www.hearingexchange.com/resources/Listservs_and_Discussion_Groups/ I hope this information is helpful to you. Please be sure to ask any questions you may have. Regards, Paula ------------------ [This message has been edited by Paula (edited 05-27-2001).] [This message has been edited by Paula (edited 05-27-2001).] IP: Logged |
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Emily Member |
posted 05-29-2001 01:10 AM
Paula, thanks so much for your reply. All the info was wonderful and will definitely make use of it. Just wanted to let you know how much it's appreciated. Can I ask, how old your daughter is? Sounds like you have a great deal of experience and knowledge! We are hoping Tayler's early diagnosis will lead to her having less difficulty with speech development, but we are intending to use total communication (ASL and speech). Again, many thanks. IP: Logged |
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muccca unregistered |
posted 06-01-2001 11:57 AM
Hi Emily, You are fortunate to realize that your new daughter has hearing loss and can investigate the technology choices which would best serve her. You will have to learn lots of information fast...and may feel, at times, overwhelmed. I suggest you contact: www.oraldeafed.org and resquest their FREE parent kit. It has a book, directory of services,free video, and resource information for new parents with infants just diagnosed with hearing loss. It is one of the best parent kits I have found. Good luck to you. Margie Clinical Audiologist IP: Logged |
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Emily Member |
posted 06-03-2001 12:14 AM
Margie, I ordered the kit! Thank you for the info. The site is great and you're right, it is overwhelming. It's great that there is so much, but between being a new mom, spending time with my family and working it's hard to get a chance to absorb it all. I really appreciate the link - thanks! Emily [This message has been edited by Emily (edited 06-03-2001).] IP: Logged |
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ash1970 Member |
posted 06-26-2001 12:56 PM
Would love to hear from you I am in same boat with a 4 1/2 month old. IP: Logged |
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Debbie/Gracie'sMom unregistered |
posted 07-02-2001 01:01 AM
Emily, As I read your posting, it could have been my own. I too have a 3 1/2 month daughter, Grace, who is profoundly deaf since birth. She was also detected in the hospital. Thank goodness for that testing!! My husband and I are currently going with an oral deaf program in San Antonio called Sunshine Cottage. It is a school for deaf children with a parent infant program. If you have not already received the packet and watched the video, I'm telling you to be prepared. It is absolutely incredible. It gave my husband and I so much hope that Grace would actually be able to talk and communicate. The program here does not teach sign at all. They say that they have found that it is harder for the children to learn to listen and speak and they will revert back to signing. We want Grace to eventually learn sign language so that she can communicate with her peers that only know sign, but we are going to wait until she has a good grasp on the oral approach. We recently learned that a piece of bone, known as the petrous ridge, did not develop in either of Grace's ears. That is the only thing that they can conclude caused her deafness. We're now looking to see if anything can be done to correct that. If not, we are looking at implants because the hearing aids just aren't cutting it. Blessings to you and your precious Tayler. Joy in Jesus, IP: Logged |
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concerned unregistered |
posted 07-28-2001 12:59 AM
I think it is important to remember that children truly are a gift. The package that they come in is not so important as the person they will become. Being Deaf or having a hearing loss will not make your child less of a person. Too much time spent on the "why me" and "why my child" cuts into precious time you could be spending with your bundle of joy! I don't mean this to sound harsh, but if you ask most Deaf individuals, they are quite happy being Deaf. PLEASE, PLEASE...I would never tell a parent how to raise their child or what to do educationally or otherwise, but PLEASE research the cochlear implant carefully before making a decision that will affect your child forever. My biggest concern is that a child would grow up to ask, "Why couldn't I just be me, Deafened or with a hearing loss, instead of you trying to make me something I wasn't...hearing." Again, please understand I am not trying to be harsh. I know there are alot of emotions going on right now. But, please think about the impact the decisions you make will have on the future of your child. IP: Logged |
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Amber's Mom Member |
posted 07-28-2001 08:54 AM
Dear Concerned, What you had to say of course has merit...however, the coin has two sides. Our Deaf kids could also come back to us and say..."Why didn't you try everything you could to help me be more like the rest of my family." My daughter is profoundly Deaf. Are you, yourself, Deaf or do you have a Deaf child? I don't mean to imply that your opinion is not valid, but until you have parented a Deaf child, it is not really fair to be so opinionated. On an aside, we chose not to have our daughter implanted, just because it wasn't a choice that suited our child or our family. We have friends who have had their daughter implanted late...age 8...and it was a good thing for their family. I seriously doubt that any of thr parents that chose the implant just did it on a whim. While I am neither pro or con CI, I strongly believe that parents are not trying to "fix" their kids if they choose implantation. They are just doing the best they can. Whether we decide to try CI later on or not is still not certain, but I do know that right now, my husband and I are doing the best we can. Just like the rest of the parents here. So, while I am not meaning to sound harsh either, none of us would make snap decisions about surgery for our children. We all want what's best for our "gift" and will do what is right for our kids and our families. Thanks for your posting. ~Cheryl~ IP: Logged |
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concerned unregistered |
posted 07-28-2001 12:22 PM
Yes, I myself have a Deaf child. I am married to a Deaf man, as well. I think this poses part of the reason I would not consider changing my child...because I have such a fabulous language learning teacher right in the house. I myself am a counselor for Deaf individuals. I am not saying that CIs are not a good thing, but doctors and audiologists often make the mistake of leading parents to believe that they will enable the child to HEAR. It enables sounds to be detected, but will not create normal hearing. My plea was not to ignore opportunities offered to the children...just to ask that parents carefully research CIs before putting them into their child's head. I would also only suggest that this be done early on...since training and all can be done much sooner. When CIs are put into older children, often there are complaints from the uncomfortable feeling the noise creates. The experiences I have had with CIs in my counseling sessions are that most children have resent for the parents for trying to change them. I only want to make parents aware of the possibilities. I do understand the other side of the coin, Cheryl. Thanks for pointing that out as well.  Good luck to everyone. Parenting isn't easy...we all only want what's best.
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Michelle Member |
posted 07-29-2001 10:35 AM
Concerned wrote ..."The experiences I have had with CIs in my counseling sessions are that most children have resent for the parents for trying to change them." There are two sides to every story, I met many preteen and teens at the AG Bell convention, and at seminars by local HOH groups, that love their CIs and love being verbal. So, apparently there are a number of older kids with both views on this issue. We simply look at the CI for our son as a "tool" for him to use. It wasn't a "fix" for a "broken" kid. Cheryl expressed our concerns: we didn't want him to ask us later why we didn't get him something that might make it a little easier to communicate with all people he would come in contact with, hearing and deaf. Once his speech and language is well established, we want to introduce sign language so that he will be able to communicate easily in any situation, with or without his CI equipment. Each family situation is so different. My suggestion to parents of newly diagnosed kids is to research all your options through websites and organizations, and then visit schools that use all communication options. Eventually the right decision for your family will become clear. And remember that your decision is not cast in stone. You can always add to your rehabilitation/education method, or even change directions completely. It all depends on your child. IP: Logged |
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Helen unregistered |
posted 08-04-2001 12:31 AM
Hi Emily! I just by chance found this website today. I just got my web hooked up and I love it. I have a 10 month old daughter(Emily)who was born profoundly deaf in both ears. She wasn't diagnosed until 4 1/2 mo.and started wearing hearing aids at 5months. They do not give her much gain at all. Even with the very strong digital ones, she still can't hear any conversation. We are looking into a cochlear implant for her. We have interviewed all the doctors in our area (Phoenix,AZ). She should be implanted by 12 months. It's been an incredible 10 months. I just can't wait until she gets the implant. She is enrolled at a wonderful school called Desert Voices, an auditory school. Her therapists are awesome and so helpful. I would love to chat more. If you want to talk more, please e-mail me @ thcartwright@juno.com take care! IP: Logged |
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Paula Moderator |
posted 08-04-2001 12:55 AM
Hi Helen: Welcome to the HearingExchange forums. How is your daughter doing at Desert Voices? What types of activities do they do? You are lucky that you learned of her hearing loss and aided her so young. I have seen wonderful things and heard terrific speech from children who were implanted young. Be sure to keep us updated. Regards, Paula IP: Logged |
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