Mom of a Teen who needs some answers...

Amy&Alex

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Hello, as my title says I am a very proud (hearing) mother of a teenager who is profoundly deaf. I have soo many questions, its unreal. I was thrilled when I found this site. I'll fill ya in on him a little and what type of challenges he is facing and if ANYONE, ANYONE, can relate, offer advise, or give some sort of encouragement for the choices I hope I am making in his best interest, I would be forever grateful!!
My son was born profoundly deaf, and we had the CI done at age 3...and let me tell you, it was NOTHING like ALL the youtube videos Ive watched over and over of how HAPPY those babies/toddlers were at first hearing sound:( So we were told that it would take some getting used to and to make him wear it all through the day and then take off at night, to get him used to it. Which NEVER HAPPENED!
By age 4-7 He would take the processor off and hide it, bury it in yard, and even tried to flush, but we still tried to encourage it and make him wear; which was less and less. ASL was what he loved and communicated with, which we had started teaching AND learning We had started teaching and learning ASL when he was about 8 months old. He caught on extremely fast and by age 10 the processor was only wore when he listened to music or played around with gpa and the guitar. By age 11 it was all but forgotten.
My son just recently moved back home with us. We are a family of 5 and Alex is the only deaf member. He had been with grandma, who lived closer to the deaf school in the area in which we lived. When the deaf school several yrs ago could not deal with the behavior prblms that he had, gma enrolled him into public school THERE. So 3 yrs passed of him only coming home on weekends. Gma ASSURED me and would give updates on how wonderful of an interpreter he had, the teachers, and the school itself. So I felt that I could NOT be selfish and make my son come home to us (in the beginning), when he was doing so good...OR SO I THOUGHT!!!
Long story short, I fought to take back the TEMP. guardianship order...fought for the last 2 yrs!!! FINALLY in June he moved completely back home!
We live in Richmond IN, and I have seen only 2 ppl in the city that use sign language. He is at a public school and once we FINALLY received the sschool records from the "Oh, so good school gma raved about"...the TYPE of class that he was in was for HANDICAPPED children...my son wasnt handicapped, he had a sensory loss. Needless to say, we have had a few hangups with him starting the 7th grade here, due to the difference in what type of work he was learning there vrs here. He has an interpreter and is finally with his peers...peers of age. His grades arent the best, but he is slowly improving. Alex has a silly sense of humor and makes ppl laugh, Ive had calls from the principal saying how wonderful they think he is and how the school wouldnt be the same without Alex. Am I making the right choice for Alex with keeping him mainstreamed is my biggest concern.
Alex is not oral so the students who havent learned any sign cannot REALLY communicate with him except through the interpreter or writing...and here his skills are not as theirs are.
So Alex is 14 now, and he came home the other day and he and I talked for hrs about his NOW wanting to get his processor remapped and wants to learn to speak. We was at a meeting for the football team and I was interpreting for him what the coach said and he wasnt wanting me to sign what the coach was saying. He said that the kids were saying I looked stupid. Now I know this wasnt true, because noone said anything to Alex, yea a few kids turned to look, but they were curious. I guess he is feeling more self conscience than I had realized. It really hurt me, I have never seen him act this way when we have been in public.
So, ANY INPUT AT ALL on this would be greatly appreciated please.
I hope to frequent this site daily in hopes of learning as much as I can so that I may point Alex in the right direction.
I understand that life comes with no road map, but others who have traveled down that certain path, may know more about those twists and turns than I.
 

AshleyRenee88

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I'm not deaf and have no idea how he may or may not feel, but I do know that teenagers are always embarrassed when it comes to parents :)
 

shel90

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The 4 Horsemen...take notice. ...

My son was born profoundly deaf, and we had the CI done at age 3...and let me tell you, it was NOTHING like ALL the youtube videos Ive watched over and over of how HAPPY those babies/toddlers were at first hearing sound

I am sorry to the OP that I had to do this. but many of us here on AD have been trying to tell certain parents this over and over again only to get called liars, Deaf militants, anti-CI and so forth just for telling the truth.

Your story is sooo familiar to many of us here and we are here to help. We are so glad you are so honest with the situation. What about putting him in a Deaf program where ASL is being used?
 

katz4life

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Amy, that was no surprise to many of us. This is really boring and tiring of the same pattern in greedy Doctors that have been taking over hearing parents of a deaf child. They fooled you, Amy. These youtube videos (of course, I have seen them a lot all over for the past 5 years) when the babies with either severe or profound deafness make the sounds when they heard something for the first time by thru the first activition of CI does not mean they are actually cured as hearing. CI - a tool. CI is not a "miracle." ::yawns::
 

femme Fatale

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Sounds like your son is learning to develop his own preferences over his previous way to communicate. Here are a few tips to help you understand:

Get his attention, make eye contact.

Make sure your face and body is visible.

If speaking, use a normal but firm tone, volume, and speed of voice when he is using his CI.

Do not over enunciate or yell.

Use check back strategies to make sure everything is going smoothly or if adjustments need to be made.

If you sense a struggle rephrase your comment/question. For example, “What is your address?” might become “Where do you live?”

Be aware of your environment. Adequate lighting? Background noise? Distractions?

Be sure your mouth is free of obstructions such as a cigarette or food.

Be aware of your tone of voice. Unconsciously you may sound or look patronizing.

Remember facial expressions and body language influence understanding.

Be patient and flexible!

Hope this helps and good luck Amy!
 

Amy&Alex

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I thank you ALL for the input so far...I do have mixed feelings on his CI, and I do know that even though Alex thinks getting that turned on will make things better with all the hearing friends he has....will it really??? It may in some ways, but this will NOT be some overnight miracle. He hasn't even been too fond of learning to lip read.
I do know this, a new girl started at his school about a month ago, she was born deaf, had the CI done young, NEVER learned sign, and talks fairly well. I think Alex has seen this...seen that they BOTH were born deaf...both had the surgery, yet, she MAY be getting to interact more with their peers (without the use of an interpreter). I was pretty amazed too that her parents NEVER TAUGHT HER ASL..
I want to stand by my son and encourage him in everything that he wants or doesnt want to do, but we HAVE to be realistic...what if he does go through with all the remapping and countless hours of speech therapy, and STILL feels as he does???
The Deaf School is an option we are considering, in the future, after we get all of the behavior prblms completely under control, because they will not accept him there if they are not, and I do not want to devastate him further than he may feel now.

I just wish he had more friends that were deaf/hoh who signed. This summer hopefully we will b able to find a camp or program that will give him the chance to make friends who he can relate to a little more.

PLEASE keep your thoughts a coming!!!
 

femme Fatale

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About the proper utilization of a CI, your son must wear it for most of his day to benefit from it. He can't just use it when the need arises. I am a CI user, and for the most part, our minds are constantly adjusting the sounds to hear them better. Without constant exposure to sound, he's not giving his mind the chance to make sense of new sounds. This is likely the reason the girl has a better grasp on how she hears with her CI. On occasion, our mind will get used to the limitations of the CI's map, and a refresher becomes necessary for our minds to continue making sense of the same and new sounds with a different set of limitations. ASL an also be combined to make full use of his communication options. He has to figure out what works for HIM, being obsessed on how he looks communicating will only isolate him from different communication methods to explore. Hope this insight helps also. :)
 

radioman

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I'm not deaf and have no idea how he may or may not feel, but I do know that teenagers are always embarrassed when it comes to parents :)

I can relate. both as teenager once in a hearing school (only hoh there in school) and as a parent now with 2 teenagers in school now. ashley is right. kids are gonna fight tooth and nails for their independency, more so as a HOH person. It doesnt mean you cant do nothing -- the hardest thing as a parent is to realize this and just be there for your kids anytime,anywhere with no string attached. Sorry -- this is the roadmap- and its the hardest one to take.

Amy, that was no surprise to many of us. This is really boring and tiring of the same pattern in greedy Doctors that have been taking over hearing parents of a deaf child. They fooled you, Amy. These youtube videos (of course, I have seen them a lot all over for the past 5 years) when the babies with either severe or profound deafness make the sounds when they heard something for the first time by thru the first activition of CI does not mean they are actually cured as hearing. CI - a tool. CI is not a "miracle." ::yawns::

Unfortunately katz just nailed it on the head. the sooner you get it out of your head that CI will help you make your life nearly normal like a hearing world and use it as a tool to know he can hear -- something, not what YOU can hear and expect him to "recognize the same sounds you do" His CI, and training will only interpret it a certain way and its not what we LIKE to think it does.


Dont take all this to the heart and feel sad. granted you might feel used/fooled but its not lost. process this as something you decide as a parent and what you think is best for both of you. You gained a child and you are helping him to grow into an adult and guiding him through life choices. he just happened to be deaf, thats all. he is the same person if he would be hearing.
 

Amy&Alex

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Thank you Radioman...It all makes me a sad,:), at times... BUT, I know that I am an EXTREMELY BLESSED momma who has a wonderful child...deaf or not! Yes, these damn teenage yrs are the worst, we were all there..and I am a just on the outside looking in. I just saw the desperate look in his eyes that night at the meeting, when he soo wanted to join in with those others boys..I have been supportive in his learning to read and write...That will be his means of communication when ppl he interacts with dont know sign. Reading and Writing the most important tool that I push! In this day and age with the web...ect.
He is a very smart and athletic boy...he played football with the middle schools team. His coaches were soo amazed at how fast he caught on, heck he was out there out showin the hearing kids who had played the peewee. This had been Alex's first yr. I had made sign book with about 120 signs for the coaches and players who wanted to learn, and do you know almost EVERY player was interessted! I also gave some to the school to put in their library so that kids at school who were eager to learn and connect with Alex could. You already know, there may be 1, IF ANY, sign language book at their school library. My daughter is at the High school and she is in the process of starting an ASL afterschool prgm, and we are trying to get the school board to add an ASL CLASS into the schools crt., as an elective.
I am his biggest advocate and whether he chooses to use the CI or not, ASL will ALWAYS be a part of his life, and I will do all I can to inform ppl.
Thank you all again!!!!
 

caz12

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i knew of some deaf kids they BSL went to mainstream school they did have problems but far sighted head teacher got their two friends bsl classes and things settled down well,Other kids in class were friends with two girls learning bsl and gradually they all started asking what signs meant what.
I seem many youtube films whenCI on the child starts smiing,but babies also smile when got wind and that painful...
 

shel90

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I am sorry..I missed the part where you said ye did go to a deaf school but didn't work out. Wow, that's tough...are there any signing deaf programs at any of the nearby public schools?
 

Amy&Alex

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No, there isnt really anything around here that I know of that is why I am reaching out now;;;we live in Richmond IN, DOES ANYONE KNOW OF SOMWTHING PROGRAM/CAMP in our area????
 

deafbirk

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By all means try to get the CI to work for him. It may not be perfect but since he uses ASL as well he can fall back on that. I think it is great you getting the books and program in the school. I am surprised it was not already since asl is common in lots of schools these days.
 

MCB

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A voice of caution. :( He may get limited benefit at that age if he only rarely used it before.
 

deafdyke

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I do know this, a new girl started at his school about a month ago, she was born deaf, had the CI done young, NEVER learned sign, and talks fairly well. I think Alex has seen this...seen that they BOTH were born deaf...both had the surgery, yet, she MAY be getting to interact more with their peers (without the use of an interpreter). I was pretty amazed too that her parents NEVER TAUGHT HER ASL..
Not nessarily.........oral deaf kids tend to have major social-emotional issues especially in high school. So she might be able to have superficial interaction, but it's very likely she's not totally included in the whole scene.
I want to stand by my son and encourage him in everything that he wants or doesnt want to do, but we HAVE to be realistic...what if he does go through with all the remapping and countless hours of speech therapy, and STILL feels as he does???
Well maybe if he does want to develop speech skills......
The Deaf School is an option we are considering, in the future, after we get all of the behavior prblms completely under control, because they will not accept him there if they are not, and I do not want to devastate him further than he may feel now.
Is there a chance you guys could move maybe? ISD is one of the good deaf schools (YAY) Are you guys near Fort Wayne? They have a dhh program there. Are you guys religious? Hammond Baptist Church has a Deaf program: City Baptist Deaf School
I just wish he had more friends that were deaf/hoh who signed. This summer hopefully we will b able to find a camp or program that will give him the chance to make friends who he can relate to a little more.
Summer Camps for Deaf and Hard of Hearing Children and Teens
 

lovezebras

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In my opinion you should still keep up with the ASL but if he wants to reMAP the CI and give it a try why not. I think your childs wants should be taken in to consideration. Especially because he's requesting it. I remember being in high school and it wasn't easy at all. I had to fight with my mom to get hearing aids and I got them after debate but I was also older than your son is now. Let him do the CI thing again....maybe it will help maybe it won't but at least its his decision and you need to stress that before you make any appts with the CI audi. Just say look if YOU want to try the CI again by all means go ahead just don't be disappointed if it's a lot of work. Tell him to for sure keep the ASL. As someone who lost their hearing starting in their teens it would have been a godsend to have terps and have ASL at my disposal then as I am learning now. I love ASL and it's a great tool for deaf individuals. Especially in college/university!
 
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shel90

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In my opinion you should still keep up with the ASL but if he wants to reMAP the CI and give it a try why not. I think your childs wants should be taken in to consideration. Especially because he's requesting it. I remember being in high school and it wasn't easy at all. I had to fight with my mom to get hearing aids and I got them after debate but I was also older than your son is now. Let me do the CI thing again....maybe it will help maybe it won't but at least its his decision and you need to stress that before you make any appts with the CI audi. Just say look if YOU want to try the CI again by all means go ahead just don't be disappointed if it's a lot of work. Tell him to for sure keep the ASL. As someone who lost their hearing starting in their teens it would have been a godsend to have terps and have ASL at my disposal then as I am learning now. I love ASL and it's a great tool for deaf individuals. Especially in college/university!

What she said, I totally agree. If your son wants to give his CI a try again and learn speech skills, then let him try. He is old enough to make the decision. At least he has ASL.
 

caz12

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i knew some oral deaf kids who have resentment to parents when they older teens.. what deafdyke say is very true about major social problems,..what everyone says i can't add to but deaf summer camps are good idea for many reasons
surely america must have psycologists that specialise with young deaf i know england got good unit but that not help you...i dont want to patronze but teens can be difficult best of times
i hope things sort themselves out as you seem to be careing mother doing your best
good luck
 

deafgam

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Amy- as a young person i believe your son is trying to establish who he is among his peers. His likes, desires, emotions, etc.... the only way he has to be himself freely is via sign language. But unfortunately for your son, he does NOT have the signing friends and community as his hearing peers has voices. It's like he is so lonely inside he is thinking the CI will connect him to his peers he sees everyday. But it will NOT last. It will take a lot of training for him to learn the hearing spoken language that he hasnt known and programming mappings on the processor. Thats my humble opinion. By time he masters enough and ready to roll in the hearing teen life he may be 20 years old. Gosh....AGAIN...IM JUST GUESSING HERE. Why not let him try deaf school for week and let him decide what he is comfortable with. He may like being with kids he can freely communicate with and not feel like he is a freak among them....oh i just saw now where he did go deaf school but not work out. Maybe move like deafdyke suggested and let him attend deaf camp.
 
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