Children without aids or CI?

Portia - posted on 04/09/2009

I'm sorry that It took so long for you guys to finally determine the hearing loss of your child. I do believe that you missed his window of opportunity. Usually the window is between newborn up to 5 yrs. He probably has gotten so use to not hearing that now he doesnt like the sound of hearing. I believe that he is happy with how he is. I think that if you were to get him the implant that it would be worse. Usually they wont even let you get the implant until your child can get use to wearing there hearing aids. But if he doesnt even wnat to keep the aids on then he for sure wont want to keep the implant on. I think you have made a wise decision by not getting one. good luck on finding the right school :)

Bobbi Lynn - posted on 03/12/2009

My daughter tells me she loves me all the time , and calls out for me in the middle of the night while she sleeps. We just listen with our eyes.  It's beautiful she just barely turned one.

Nicole - posted on 03/12/2009

My 5 yr old daughter hates her hearing aids as well and chooses not to wear them.

Buffie - posted on 03/09/2009

I found that many families I worked with went through times of sress and often couple would split because parents did not support each other emotionally. Do you have friends, family who could be your sounding board when you need to vent your fears, tears and need tender love and care?

 

 

We have certainly had our share of stress as a family, and fortunately for me, my family is very strong and my husband and I couldn't live without one another, because of the way we support each other emotionally.  I feel very lucky for that and have more than just my husband  when I need someone, but most often its his shirt that gets soaked with my tears (for whatever reason I might be crying).

Buffie - posted on 03/09/2009

Hello again! I really, really appreciate everyone's advice and sharing your stories with me. Just knowing that there are others out there who experience a similar circumstance is tremendously uplifting. My husband and I have discussed my misgivings about the decision that I made regarding cochlear implants, and we have decided to go on teaching him sign language and not to go ahead with the implants. We both feel that its important for him to develope and learn the way he is.  I have faith in my abilities as his mother and teacher, I have faith in my family's strength and love, and I have faith in God. I am on the search for some organizations that will help us with teaching and learning more about sign language, so if anyone has any information you could give me that would be awesome.

Jeremiah has chosen to wear his hearing aids on a somewhat consistent basis for the last couple of weeks, though. And if he should show more interest in hearing or gets to a point when he wears them more than not, I may change my mind again. We discovered together that he really likes music, he was dancing and intently listening for a whole 20 minutes (which is the longest he's ever left his aids on). He's been wearing them on and off all day, usually for around 10 minutes at a time. Then his ears get itchy and he takes them off for a little while, but he's been wanting to put them back on. I think its wonderful because he chose to put them on that first time (he got them out himself and brought them to me), and he's the one making the decision about when to wear them and when not to. I've been encouraging him to, but forcing them on him is not something I will do, he's not got the type of personality to be forced to do anything anyways. He's a strong willed little booger and makes his feelings and opinions very clear, even if he doesn't say a word.

Again, thanks for all the advice. I hope all is good for everyone. Take care, Peace and Love!!

Anneke - posted on 03/09/2009

Hello Buffie

I'm from South Africa and spent 14 years as a teacher and Parent Guidance Teacher for Hearing Impaired Children.  I'm afraid that the window of opportunity you've been told about  comes to an end at the age of approximately 7.  With your son not having worn his hearing aids consistently the past 5 years makes it very diificult for him to communicate verbally if at all and I would advise you to see a professional Audiologist as soon as possible.  I don't know what the situation concerning Implants and Hearing Aids are in your country.  I do know that an unstimulated hearing nerve for too long makes it almost impossible to catch up enough language and understanding of oral language.

 In South Africa we don't have Interpreters or class aids funded by the state and our parents and children walk this road alone financialy .If a child is maisreamed he needs to be on par with the rest of his hearing peers. Often our parents would take the big step of uprooting the whole family to move to the Town with an appropriate school for their deaf child. I take my hat off to parents of children with special needs as they make so many sacrifices to accomodate often one child's needs. The choice is however yours and your husbands to make and my suggestion is that you make it sooner that late.

Good luck

Anneke

 You made the choice as his parents not to aid his hearing so advisably go ahead with the sign language and rather encourage the whole family to make the most of it to show your son support  and to show him acceptance.  Don't be so hard on yourself and don't feel guilty or think you made the wrong choices. Make the best of the ones you took 3 years ago and move forward possitively.

I found that many families I worked with went through times of sress and often couple would split because parents did not support each other emotionally. Do you have friends, family who could be your sounding board when you need to vent your fears, tears and need tender love and care?

Emily - posted on 03/04/2009

Hello there,

I have a hearing loss, I was in the same situation as your son. I was so stubborn by not wearing hearing aids for many years. It is hard becasue right now he is scared and not knwo what that weird object is. It would be nice to explain that it is a thing that make you hear. Let him wear it for a minute or two daily until he gets used to it. There are alot of interpreter agency in your area who will be able to communicate your son when he is in the school. Sometimes, they have deaf teacher who teaches at school. I remember that the hearing aid sounds muffle until i got used to it and it became very clearly. I would recommend when your son is in school, tell the principal that it is against ADA says they must provide sign language interpreter in any settings. I hope this will helps.

Allie - posted on 02/23/2009

Cochlears are so iffy...so much unknown, some say great, some say NO WAY...I remember many hearing aids going down the toliet and thrown in many different places....searching and looking ughhhh finally got those uhmmm not sure what they are called...things that pin to the shirt and when they fall out they fall out on the coat, or shirt....we started small with our aids.....I did NOT make them be worn ALL day....we took it in hours....minutes, TIME and she was always rewarded for wearing them....now that my oldest daughter is older she has more of a choice....and is able to share with me her thoughts and feelings....but when young we NEED to give them every thing that is out there, make everyhting accsessible....my girls are both hearing imparied and both a severe loss....we pulled them from public school....and they are in a private Christain school....Aubrey was a failing student and now on honor roll.....you just have to be patient to find their groove....

Buffie - posted on 02/19/2009

Honestly, I have been beginning to wonder, myself, why I chose not to have Jeremiah implanted. I guess at the time I was overloaded with emotions a person can't even begin to express, identify, or sort through and any decision I made, I was afraid would be the wrong one. The procedure in itself scared the crap out of me, and having it done without being able to explain to him why or what was happening scared me even more. I thought that I shouldn't interfere with the way God made him and adapt my life to suit him, rather than change him to suit me....I dropped out of trade school, haven't had a job since, haven't led any kind of life outside of staying home to take care of Jeremiah. My older 2 kids are resentful of both him and me, and I think my husband might even harbor some resentment towards me, though he'd never say so. I believed that I could provide him with what he needs to thrive and he wouldn't need to hear for me to do that.

Even as I type now,  I am realizing how silly those reasons sound, and that I wouldn't have been changing him at all, but instead providing him with an advantage that couldn't possibly have a bad outcome. He's living in a world that he does not understand and its an endless source of frustration. Everyone else in the household is hearing.

I was told also about the "window of opportunity" though I'm not sure whether or not that window is closed. I don't think so, because one thing that I've noticed more and more is that Jeremiah WANTS to talk to us, and frankly, believes he is. I think that if I allow the implants, he would adjust and adapt, and more importantly, learn quickly.

I'm still afraid, though I'm not sure what I'm afraid of. Maybe the wrath of God coming down on me for either indecision or making the wrong decision. I know that is sillier yet, but fear is uncannily destabalizing.

Thank you so much for sharing with me and for the luck and well-wishing. If any of you have any resources that you think might come in handy, please please let me know. God bless, peace and love!

Shana - posted on 02/19/2009

Hi! Our son was FINALLY diagnosed with a bilateral sensory neural hearing loss at 2 1/2 (he just turned 6). We saw 4 audiologists over those first years before we landed at Children's Hospital in Seattle. He HATED his HA's at first...it has to feel unnatural and probably frighteningly loud but we just started with him on our lap watching Nemo for 5 mins..then increased it daily. After a month he just forgot they were in and wore them the entire day. About 3 months later he began asking for them first thing in the morning. I would suggest rewards for 5 min increments. Our son now knows how important they are. It isn't a quick fix and they have to learn to use the HA's and CI to get the most benefit. My son had zero words at 3 and is now reading at a 2nd grade level. We were lucky to have Seattle Children's Hospital and they're hearing loss clinic. I am fairly certain they wouldn't think it was too late for your son to get a CI. I know he rejects the idea of the HA's or CI but I wouldn't give in so fast...he's a child. You know what's best for him more than he does. I know this sounds extreme but I would consider moving. It wouldn't be forever but just to get him what he needs to thrive. It will change his life. We bought our dream home 3 months before our son was diagnosed and sadly we had to sell it to be closer to his school and now live in a much smaller home but how could I not? Anyway, I hope this helps! Don't give up! There are more resources out there than you can imagine...even by mail! Good Luck!

Michelle - posted on 02/18/2009

i just wanted to add to crystal's thread, that I know it's a tough road to go through.  It's not like any other child.  We have our own obstacles to conquer within ourselves and our child and it's not just your child going through it.  It's everyone involved.  There are places like here and others to help you vent and help you get through it BUT the outcome, though it may seem far, is sOOoO worth every single headache you've gone through to get to where you are trying to be with your child.  I pray every night for anyone having to go through this and any other child that has special needs or are sick.  It's hard to have a child let alone to have a child with special needs.  God bless and again, best of luck!

Crystal - posted on 02/18/2009

Ok, well I'm not on this road either...in fact we are well past this road. My son is going to be 3 in May and he has been bilaterally implanted over a year ago. He was also born profoundly deaf at birth so we were working on this for quite sometime. I do agree with Michelle in why would you opt NO on getting him implanted? I know it seems like it would be a hard decision to make and it is but we looked at it as we have 2 other boys that are hearing and us the parents are hearing so why would we want to deprive Noah of what we have?? Right you/us are still in control of our children and we are going to do what ever is best for them and you may have so logical reasons as to why you don't want him to go through with it. For us it was when and where. I know you stated that he refused or has a hard time wearing his aids....oh gosh do I remember that with Noah. With Noah being an infant when he was fitted he was so hard because he we were constantly battling with him to keep them on and even after he got his implants he would constantly tear them off...it just takes consistantly putting them back on and signing "no" and telling him they have to stay on. Now Noah being 2 1/2 comes to us in the signing for his implants to be turned on. It's amazing to have him turn towards his name and hear you say, "I love You" and him try to repeat it back. We are also hours away from a deaf school and would never put our child on a bus on a Monday to be sent off to a school for the week and have him come back on Friday. Not our family. We are strong enough to pull through this but not strong enough to send our child away for a week every week for the them to get a deaf education. If we lived closer it may have been an option but we would still have gone through with the implant. Please let me know if you have any other questions. It is good to get it done ASAP...the earlier the better but don't let him being 5 turn you away in thinking that its too late. It's never too late in letting your child hear you say, "I LOVE YOU". :) Good luck with your decision.

Michelle - posted on 02/11/2009

I am NOT at this road but I wanted to say that it IS difficult to make a decision to sign if you have no schools CLOSE to you to teach him.  While my son IS bilaterally severe to profoundly deaf, I constantly kept hearing "the sooner the better as there is a window of opportunityfor them to teach them how to hear and learn, etc".  I would I'm a little curious as to why you opted NOT to get the cochlear implant but I would definitely talk to a audiologist because there are LOT of things to consider with the implant not to mention the time needed to bring him to the many doctors visits after the implant to teach him how to listen.  It looks like he's been set in his quiet ways.  I cannot believe that with all the pediatricians you've seen NOT one has even considered it.  I'm sorry you're going through this tough decision but good luck!  I hope whatever you decide it works out for both you and the best interests of your boy.