Drew's Dad
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jesse, are you looking at simultaneous or sequential implants?
update on my 9.5-week old son - now has HA's
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We're looking at simultaneous implants. It seems to be the best route.
Just because he doesn't necessarily respond to sound in speech frequencies, doesn't mean the learning process shouldn't start. My wife and i still need to learn how to teach Evan how to listen because the plan is to have CI's in the coming months. AVT is more about teaching us how to teach him, rather then the therapist teaching Evan.
jag,
from my interactions with people, from my parcipatation on forums like these....I recall a post from a parent with a kid with an hoh loss, who was having her son evaluated for an implant!
jesse,
I know off the top of my head that they tend to really push an "either or" approach in Toronto. Don't buy into that. It's very possible to do a full toolbox approach. As long as your son's getting the appropreate therapy, he will progress and thrive. Auditory-verbal therapy is awesome.....but don't forget that while the technology may be able to help him, he will still be very dependent on the technology. (that's something that a lot of parents forget)
Give him the tools to be able to function in EVERY sitution. Also, there's the possibilty that your son might not do as well with the implant as other kids.
Like he might be able to hear, but not as well as someone who went deaf when they were five months old.
We're not being pushed in any direction, it comes down to what we want for Evan. We're going to focus on oral language right now, and if for some reason that doesn't work for him down the road he can always be taught sign language. As you know, the window for proper oral language is small, the window to learn sign language is always open. It's the same for everything in life, we're dependent on technology, dependent on this and dependent on that. I'm extremely dependent on my truck for work, if my truck breaks down i'll worry about that when it happens. I'm not going to go out now and buy a repair manual and all the parts to fix it before it happens. Take one day at a time, and prioritize those days as they come.
You're correct about the possibilities of how well he'll do or not with the implants. But on the other hand, he may do really well with them, without a problem. Why so negative?
Yes a parent with a child with hearing loss will hear about Ci's and may decide to go through the evaluation. Why not? The family you bring up evidently is not part of the community that is not dealing with hearing loss which is the group that I believe I mentioned, it's a family that does deal with the realities of a family member not being able to hear.
I'm fairly sure that if the child was only dealing with a moderate loss the child's ent and audiologist would tell the parents that a ci would not an option at this time.
On the other hand, if the child has a severe/profound loss (which you seem to concider hoh, myself I've always concidered hoh to be mild/moderate..levels which seem to actually get good results from HA's) then the child should be evaluated if the parents want to explore an implant option. Testing itself will tell the team if the child is getting good benefit from the HA's.
Personally i've been having an extremely difficult time recently with everything. I'm just very angry, but i don't know at who or what. I'm going to have to speak to a professional about that because it's started to make me really depressed.
Thanks for reading.
You know, when my youngest was born 18 yrs ago I had a few problems of my own dealing with the diagnosis of Down Syndrome....then add in the heart murmer that required surgery, then the hearing loss and so on. (she's actually been very healthy and missed many problems that kids with DS can get) Sure I would have loved to have had a normal child, instead I have a child who will always BE a child. Even in my anger I was able to come to the conclusion that life isn't that bad, and that as long as no one was seriously injured or died because of a problem life is good. Grieving for loss is fine and the fact that your child isn't exactly how you had planned for, is a reason to except that there will be a grieving process.
Have you read Emily Kingsly (sp?) essay/poem Welcome to Holland ? It's really a good read for parents just going through the whole process of dealing with a child who is going to have to learn to live with a disablity. Her son was born with Down Syndrome. I think she was also had something to do with Sesame Street, can't remember exactly what that was. Anyway talk to someone if you must. Life is good.
jillio
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What about his languge development prior to CIs or if the CIs are unable to provide complete access to the speech ranges? Language development begins at birth. Time lost is difficult to make up.
jillio
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Its not negativity on dd's part, but realism. The fact is, Evan has already missed out on language development in the first months of his life. As he is not responding with the HAs, he will continue to miss prime opportunity for language development until CIs are done, and he has been activated, and learns what sound even is. There is no guarantee that he will perceive sound in the speech frequencies even with CI. The time that you are missing in allowing him to access a visual langugewill cause more resposnible for educational and psychosocial difficulties of the deaf than their deafness is.
AVT is not that difficult a practice to learn for a parent. There is time to learn the theory after implant. It is realtively useless for Evan if he is unable to access sound through his HAs that will facillitate language development. However, he could be acessing language in a visual mode that will actually improve his development of oral language.
Who recommended beginnig AVT prior to implants? Was it the CI center? Have they given you the mistaken infromation that allowing Even to use a visual language will prevent him from using the CI to listen and speak?
You are correct that the window to acquire the foundations of language is small. That includes the acquisition of ASL, not just spoken language. The fact is, without 100% access to spee chsounds, and very very few achieve that, even with CI, Evan will loose the valuable time needed for language acquisition. That will interfere with his ability to develop native language use of any type. He will never be able to use English as a native, nor ASL as a native, if he is unable to acquire language at all. Thje acquisition period applies not just to spoken language , but to any language.
You have obviously been told that you should focus on oral language and if that doesn't work you can always add sign. While this may be true, it is also true that the approach will cause untold difficulties for Evan not just with language, but with cognitive development and education. This is an outdated philosophy that is held onto by the oralists....many of whom work within the CI industry...that has been disproven time and again through empirical evidence.
For your son's sake, consider adding visual language to your tool box.
Likewise, remember that if you are having difficulty dealing with Evan's diagnosis (and that is very normal), the problems you are having will put you in the position of not being open to perhaps all options. Many parents enter into these decisions from an emotional perspective of wanting to correct what they see as being wrong with their child, to "make up" for their deafness by giving them the tools they think will help to them to function as "normally" as a hearing child does. You need to be clear headed and able to approach the decision from Evan's perspective as a deaf child. To do that, you definately need to deal with the problems you are having accepting Evan as who and what he is and will always be: deaf. It isn't a tragedy, trust me, and as the parent of a deaf child myself, I can tell you that with acceptance, it can be a wonderful, enlightening journey for both you and your son. Without acceptance, it can be traumatic for both of you.
Cloggy
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Exactly!...
You're doing good Jesse.
And I strongly relate to your situation. With Lotte it was the same. HA's did not show any benefit. We chose bi-lateral CI for her and it showed results very quickly.
As for "your child might not benefit".... it's the negative vibes that resonate here in AllDeaf a lot, and I am glad to see you judge them the way you do.
With the engagement you and your wife have already shown, he will do great with CI. Since, roughly said... The success of Ci is 10% implant, 90% implantee and parents...
I'm sure Evan will do great- thanks to his parents and support-group.
Teach him sign language first then teach him to talk and lip read later. He needs to communicate with his parents first. Other wise he will be immature emotionally deaf adult alike me and others who were forced to learn to read lip without a language and communicate. good luck with your son's ci.
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I second that opinion!
jesse, we're NOT saying "throw out the speech training with the bathwater"
Continue with the speech training. Of the orally skilled kids I know, virtually ALL of us are very glad we can hear and speak. We're just saying that it might be a good idea to start ASL early. Kids can learn two spoken languages simlatanously....there is NO reason why that can't apply to ASL and spoken language. It's a lot easier to start out with a full toolbox, then it is to have to teach a very delayed in language kid sign.
You're assuming that he'll be able to completely master speech. Most kids can hear and talk, but they still have significent language delays. There's a reason why there are still oral schools that go up to grade eight.
We're not bashing oral speech at all..As a matter of fact, its great that you're OK with Sign! YEAH!!!......we're just concerned that you're kind of prematurly removing a potentional safety net. After all, the language window ALSO applies to ASL, even if it's not a spoken language.
We're not being negative. More like........"look there's a VERY real possibilty that your son may not be able to totally and completly master speech. It's better to have a safety net there just in case." Also even if your son does really well speech-wise, ASL can still be a very good tool for the times when oral language isn't appropreate or enough.
Continue with the speech training. Of the orally skilled kids I know, virtually ALL of us are very glad we can hear and speak. We're just saying that it might be a good idea to start ASL early. Kids can learn two spoken languages simlatanously....there is NO reason why that can't apply to ASL and spoken language. It's a lot easier to start out with a full toolbox, then it is to have to teach a very delayed in language kid sign.
You're assuming that he'll be able to completely master speech. Most kids can hear and talk, but they still have significent language delays. There's a reason why there are still oral schools that go up to grade eight.
We're not bashing oral speech at all..As a matter of fact, its great that you're OK with Sign! YEAH!!!......we're just concerned that you're kind of prematurly removing a potentional safety net. After all, the language window ALSO applies to ASL, even if it's not a spoken language.
We're not being negative. More like........"look there's a VERY real possibilty that your son may not be able to totally and completly master speech. It's better to have a safety net there just in case." Also even if your son does really well speech-wise, ASL can still be a very good tool for the times when oral language isn't appropreate or enough.
Jazzy, I agree that communication with the parents should come first. A visual system for communication, acquisition and literacy in their familial language, is possible with Cued Speech/Cued English.
Exactly!...
You're doing good Jesse.
And I strongly relate to your situation. With Lotte it was the same. HA's did not show any benefit. We chose bi-lateral CI for her and it showed results very quickly.
As for "your child might not benefit".... it's the negative vibes that resonate here in AllDeaf a lot, and I am glad to see you judge them the way you do.
With the engagement you and your wife have already shown, he will do great with CI. Since, roughly said... The success of Ci is 10% implant, 90% implantee and parents...
I'm sure Evan will do great- thanks to his parents and support-group.
Thanks Cloggy, i really appreciate the support. It appears to be a very hard thing to get on this message forum when CI's are mentioned.
To everyone else who is pushing ASL, i simply have one word for you, "no". That is not the direction that we are taking Evan in. This is our choice, or ultimate decision. Evan is our son, or responsibility and we believe we are doing the right thing. I know that a lot of you strongly disagree with what we choose, but you're just going to have to deal with it. I can accept your choices, why can't you just accept ours? It's so frustrating to post here sometimes because i get certain things pushed and pushed on me, and my family.
My wife and i have met several families with deaf children who now wear CI's. One child in particular is now 6 years old, he was implanted with his first CI at 2 years old. He was diagnosed late, and wore HAs from the age of 1 till he was implanted with his first CI. He had his second done within a year of the first. He is profoundly deaf in both ears, and when you talk to him now at 6 years old it's like talking to any other 6 year old. He didn't learn ASL, he went through AVT. We've met several other families with very similar stories, all with the same results. Not to mention the independent research that we've done that displays the same positive results.
Please stop pushing your beliefs on other people. I don't push my beliefs on you. That's all i have to say.
Definitly loml..Don't forget about Cued Speech as a possible tool too! .......It's pretty clear that nowadays the debate is over which language should be a dhh kid's first language. There are no easy answers. I actually think that oral first is OK, as long as the child is intensily followed to ensure that they are doing OK orally. At the first sign that the kid is having issues with oral speech, supplementizing with Sign should be the first defense.
I also think that oral first kids should learn Sign early on. Like a good age to learn Sign, would be around kindergarten/first grade so that they could acheive fluency in Sign. Remember, it's quite hard to achieve fluency in a language (ANY language) after the language window has closed.
I also think that oral first kids should learn Sign early on. Like a good age to learn Sign, would be around kindergarten/first grade so that they could acheive fluency in Sign. Remember, it's quite hard to achieve fluency in a language (ANY language) after the language window has closed.
I can see where you are coming from. You are hearing parents, living in the hearing world, and you want to raise a hearing child. That is completely understandable. If you were french parents, living in a french culture, you would want to raise your child french. I can respect that choice.
I am profoundly deaf, but I was hoh through my childhood. I was late as far as aquiring spoken language. I didn't even start speaking until I was 2.5 years old. Until that point my parents used total communicaiton with me. It was a combination of signed english, and spoken english. I was in intensive speech/language therapy as well. I picked up on sign almost instantly, and the spoken language soon followed. My spoken language caught up to an age appropriate level before I started kindergarten and my parents stopped signing with me. It is possible to catch up in language development and I am proof of that, but it isn't super common. I am not saying to sign with Evan, I am simply telling you my story. There are many different approaches to raising a d/Deaf child and it is the parents choice.
As for dealing with your feelings about the loss, have you connected with the Canadian Hearing Society? They are on Spadina Rd. a bit north of Dupont. They have a program called Connect Counselling that offers services to deaf/hoh individuals and their family members. CHS is a great resource in general as well. They have a very good technical devices store with visual alarms and other adaptive devices. Even with CI's Evan will eventually need those things for at night.
I am assuming if you are doing CI evaluations in Toronto you are already well aquainted with Sick Kids, the only other option is Sunnybrook but I was under the impression that they mainly deal with adult implants. They can both be a great resource as well.
I am quite well connected with many resources in Toronto and if I can offer you any guidance in that area just let me know. If you haven't already check out CHS. Welcome to CHS Website
Thanks Jenny. Yes we are dealing with Sick Kids, for the next 18 years or so hehe. It's a great hospital.
Just wanted to mention, those feelings that i was feeling have long passed. I felt that way at the beginning, but it's not the beginning anymore. Thanks for your idea's though.
Just wanted to mention, those feelings that i was feeling have long passed. I felt that way at the beginning, but it's not the beginning anymore. Thanks for your idea's though.
Thanks Jenny. Yes we are dealing with Sick Kids, for the next 18 years or so hehe. It's a great hospital.
Just wanted to mention, those feelings that i was feeling have long passed. I felt that way at the beginning, but it's not the beginning anymore. Thanks for your idea's though.
I am 18 now, so I have graduated from Sick Kids hehehe. They are a great hospital though. Although it was kind of embarrasing going to their ER when I was 17, about to turn 18 in two weeks, and having everyone ask me where my child was, and then once they found out I was the patient exclaiming 'OH! You are a big kid!'...I was forced to go their on that particular occasion hahaha if it had of been up to me I would have gone to Toronto General. Anyway I have moved onto Sunnybrook now. I am going for the initial CI evaluation on June 12. It is not something I want to do, but my audie wants me to go and just look into it. Just so I am well educated about all of my options.
Tap into the CHS resources though! They are GREAT! Especially as Evan grows, and starts to need technical devices and such. They are also great for advocacy support. If you are planning on sending him to a public school with the TDSB (I realise this is WAY down the line but FYI) you may really need advocacy support. CHS will talk to anyone you need them to - pre-schools, doctors, who ever - if you feel that they need to be educated around hearing loss and the ways it may effect your son.
jillio
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I don't think anyone is attempting to push their beliefs on you. They are simply explaining the reality of what it is to be deaf. Who better to inform you regarding the needs of a deaf child than a deaf adult who has lived the experience? It never ceases to amaze me how many hearing aprents come to a deaf message board asking for advise from the deaf community, yet when that advise differs fromtheir own hearing perspective, they totally discount it.
You have some extremely high expectations for the CI. I hope the devise lives up to your expectations, but results are extremely variable. Even with great results, your child will never hear as a hearing child does, and will always be functionally HOH with the CI, and deaf when it is not in use. That means that he will still, even at his best moments, miss out on auditory information. This is an important consideration in language development, as language development is the most critical element of cognitive development. Re your example of the six year old....being able to speak as a 6 year old is not an idication of receptive language of a 6 year old. This will become evident as the child enters and attempts to get through school. Language delays are the single most complicating factor in academic achievement. It is much easier to prevent them by using a full tool box approach than it is to remediate them using an oral only approach. You cannot solve the problem using the method that creates the problem.
Again, no one is pushing anything on you. People are simply attempting to provide you with real life experience that could prevent you from repeating the mistakes that have been made in the past, and continue to be made. I would think that you would be appreciative of the fact that individuals take the time to share their experience with you, and to answer the questions that you yourself have asked. Just because you get answers that are different than those you want doesn't mean that anyone is forcing anything on on you. It simply means that you continue to see things from a hearing perspective. That's fine if your son is hearing. But your son is deaf. You need to uinderstand what it is to be a deaf child if you are to be of assistance to your son. Shutting out the deaf community is not the way to develop that understanding.
I wish you luck. You and your family are going to need a great deal of it.
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