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My son is deaf.........

4K views 79 replies 31 participants last post by  fairejour 
#1 ·
Hi, some of you know me
some of you probably dont

This is my first post in here. I have some to the sad comclusion that my son is somewhat deaf. He is 2 1/2 and I have been senying this since birth. He was a hospital born NICU preemie and he failed 3 hearing tests before leaving the hospital. I didnt want to believe he was deaf, I justified my reasoning by saying " He was on phenobarbital, of course he isnt gonna pay attention to a hearing test."

But now there is no denying it, when he stands 15 feet from me and I call his name normally he doesnt even look up, I have to yell to get him to respond. It hurts b/c I feel bad when I yell for him

I know he can hear when you are close to him and he does say a few words, but moslty it is "close sounding " words

I wanna cry, I wanna yell at the stupid OB who never warned me about GBS, I wanna hold him, I wanna do everything just to make it ok, but then I stop and realize IT IS OK
We can work through this, it is just gonna take some time
As soon as the tax return comes in the are signing up for insurance and taking him to an audiololgist for a diagnosis
So if there are any other mamas here who have deaf children please point me in the right direction, books, videos, anything, please help me and my son
 
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#53 ·
Indiegirl - there have been several mommas that I have spoken to who say that when their children reach puberty they had a significant drop in hearing. I asked my doctors about it and she said that there was no research stating that - but still after hearing a few stories about it you begin to worry. It wasn't anything I read in a scientific journal ...maybe I should have stated that....but I have heard it repeatedly that this is what some mommas see. Then on the other hand, you have the mommas that say their kids went through puberty just fine. You can't help but worry.

I was told that my DDs is most probably stable. SOmething that a "U" shape curve can mean that a hearing loss is stable. But then I mentioned that to someone and they said that their child had a major decrease in hearing. Gosh, I wish I could say specifically who it was from but I can't remember a specific name. I just know it was something that I took away from many conversations.

I know one mother specifically who I have talked to on the phone that her teenage daughter has had two major drops since the diagnosis. She has gone from mild/moderate to severe/profound. It worries me - that what we know right now and what we are doing right now may be worthless in a few years.
 
#54 ·
Sara, I hear the fear in your post and want to offer a hug of support. Can I (kindly) put out there two things:

We can never really know anything about the future. We only have today. Why borrow that fear? Why let the fear of what may happen ruin what you have today? I choose not to let that kind of fear dictate the choices I make in life. It may happen, sure. But all indicators are pointing to the fact that her hearing is stable for today.

You say that what you are doing today may be worthless in a few years. Again, I say nothing is worthless. All the hard word shapes and creates your current reality, which shapes what will be your future reality. Giving her all the tools she needs to advocate for herself and live in her world: be it the hearing world or the deaf world, will only make her stronger and more able to stand on her own two feet.

So what if she loses her hearing? She'll have to find her way just like she did before. You'll be there to help her.

If this is the worst thing to befall our children in this life, so be it. I'll take this any day over other issues they may face. KWIM? All we can do is trust our children to be the people they were born to be--and help them discover this world on their own.

Jesse
 
#55 ·
Thanks indiegirl. I say what I feel on these boards. Its a lot easier to type them out to a bunch of strangers than keep them in all the time. I think my fears are really no different from the fears of every parent. Every parent wants their child to succeed. So..........And I agree I would take this over anything else that could be possible. I love my daughter - she is an amazing little girl to me. Its funny to watch her. I grew up so quiet and shy mainly because I was self conscious about my glasses and crooked teeth. But look at her. There are so many things that could get her down and she just smiles day in and day out. She says if "her friends don't play with her she finds someone else to play with". Man I think she's brilliant!LOL!

But I've stated before that I think we are given an amazing opportunity. I can see the beauty in her accomplishments every day. I can see how amazing it is just to hear her conquer a new long word or try to start reading. I will never take the little things for granted when it comes to her.
 
#57 ·
Jesse, I love what you had to share about raising your child in the most holistic way for your family.

I don't necessarily think that Deaf programs offer the best option for the deaf/hoh child... it is such a huge challenge to bring together all the variations in deafness and try to educate.

I definitely agree that it is crucially important to have a language-rich environment for the deaf child! Language acquistion may not happen as naturally... so we must be vigilant that the child acquires language and is able to use it comfortably. What exact mode of language is totally up to the family, as long as the family can continue to be open to the best approach for their individual child is, and maintain awareness of their language development.

And, yes, I LOVE the Waldorf approach!! I think the Waldorf educational model works SO well for the deaf child... a language-rich environment, a educational approach that honors the individual spirit of each child and what he/she has to bring to the world.

This is all why I am homeschooling, using the Waldorf approach. My second babe is Deaf, and is also a Violet!
So I believe that I am best able to provide a language-rich environment and foster that language development if we are homeschooling. In Deaf programs, so often the focus is on meeting each child's variations in language development. It is such a challenge!

Jesse, I'd love to connect with another signing Waldorf family! I was part of a group that brought Deaf children to Waldorf in northern CA a few years ago. I co-taught in a bilingual Waldorf preschool/kindergarten that had three Deaf girls in the classroom. We taught ASL classes at the local Waldorf school, had ASL summer camps, and ASL storytelling events, and so on. Two of the children eventually moved on... so the program is not active anymore, but my dear friends' child got a CI (at age 5, after developing a strong language base in ASL) and continued with Waldorf, with some interpreting.... but I don't know how much interpreting she needs at this point, at age 9. So anyway, this was all just saying how much I really love the Waldorf model and think it can be a great fit for the deaf child.

Playdate, yes!!

Again, I am honestly not trying to get into a debate on ASL versus speech. We all go through this elsewhere. What I really feel is important is that we are able to share our commonalities, and respect one another. I totally totally support the frustrations of hearing parents of deaf/hoh children regarding the militant Deaf. I don't believe that approach works, and alienates hearing parents from the Deaf community. I have many friends who chose to teach their deaf children speech, or to get ci's. As long as the child is thriving and is able to use language comfortably, and the family continues to be involved, it's all good. I've just seen so many deaf children coming from families that chose to focus on speech while neglecting language development. Those children end up at Deaf schools, severely language delayed, and starving for language. I am sure those of us here will not let that happen, no matter of the educational approach we choose. We are all striving to be conscious, commited parents. That is what is most important in the end.
 
#58 ·
Quote:

Originally Posted by Lou
Laohaire, were you a early reader, or a voracious reader? How did your language acquistion happen? I find that throughout most of my experiences with well-educated and articulate Deaf/deaf people, most were really voracious readers.
Yeah, I was big on reading as a kid. I don't know what counts as early, but I was reading at least some stuff by 3. I grew up as an only child, so books were my friends.

Quote:

Originally Posted by indiegirl
ETA: I do not equate her hearing loss with my poor vision in general. Maybe it was a poor comparision. Of course her level of hearing loss effects her on a broader scale. Right now, she understands her hearing loss in those terms. She doesn't mourn for hearing she never had. She sees the situation the way I described it: she wear hearing aids like mama wears glasses. It's not a big deal for her right now.
I didn't mention it before, but I am also legally and progressively blind. I agree her hearing loss would effect her on a broader scale. I have found that the biggest handicap involved with being deaf is a social handicap - at least in the mainstream world. My observations of blind people suggest they are much more able to socialize on a mainstream level. Being HoH means you miss the subtleties of social interactions. I struggled with it during elementary and middle school. Today I don't find I have social problems, but I think the only thing that really changed was that we adults, while still petty, don't have the SAME petty interactions that children do. I don't find I'm disadvantaged with the adult type of petty interactions


Then again, I realized I'm probably not the best person to offer my experiences to this thread. I'm debating whether I should post at all
Ahhh, what the heck. Best of luck to the OP Mama.
 
#59 ·
My oldest dd has total hearing loss in her left ear. We found out later on with her. We were given the option to get implants (not cochlear, the kind that would transfer sounds from her deaf ear to her hearing, sorry I cannot remember what it is called) The audiolgist didn't recomend it, and after researching it more myself we decided against it.
She is in ps right now and receives services. There is an FM system in the classroom, she has preferential seating (from of the class with "good" ear towards the teacher) She is given extra time on certain tests, and is seperated for some tests that require a lot of reading, because she is easily distracted. Some things are reread to her. She has been in speech since beginning school (even before we knew of her hearing) and I just had a meeting for the annual review and she doesn't need speech anymore
They left her on consult basis just in case, but don't feel she will need it. She also has audiologist consult at the school once a month for about 15 minutes just to "check it" Her school has been wonderful about this.
I am wondering whether I should get her involved with the deaf community. I mean, we haven't tried to avoid it, but haven't looked into it either.
She struggles with feeling like something is wrong with her
even though we stress how this is the way God made you, everyone is special, etc. Maybe getting to know other dc like her would help.
I think ASL would be wonderful to learn for all of us regardless of how we hear.
 
#60 ·
A small update, the deaf center called me back, and they need a diagnosis first and pointed me in the direction of the best place to get and indepth diagnosis, Childrens Hospital of WI
Bad news is the there is a 2 month wait list for a diagnosis
:

OH well, we are still working with Connor, he is signing more and starting to "talk" more

It is getting more frustrating though b/c 95% of the time we cant figure out what he is trying to tell us
SO both Connor and I end up getting frustrated
But we are working through it
 
#61 ·
JesiLynne,

Both my sons are HOH. Aerik is nine and we didn't find out about his hearing loss until he turned seven. He went from being diagnosed with ADHD and having an aide in the class to help with his behaviour to - once being fitted with hearing aids - being at the top of his class academically with NO signs of ADHD and NO behavioural problems. He's a model student, has a lot of friends and is a happy, thriving, bright little boy. I am so proud to be his mama. I wish we could have caught his loss sooner, but his speech was sound and his pronounciation wasn't far off. They had no standard hearing tests at the hospital when he was born and we ALL missed his loss. He has moderate-to-severe loss, btw, and hasn't lost any more hearing in the last two years.

Declan, our three-year-old, has mild-to-moderate loss thus far. He hasn't received hearing aids yet. It took a LONG time to get him in for testing due to some mix-ups. However, he should get them in May and I bet we'll see a big difference as well. His speech isn't entirely clear, but his vocabulary is amazing. I think we would have missed his loss altogether had it not been for his brother's diagnosis, which would have been a shame.

I'm pregnant again and we will have the baby tested at birth and every six months thereafter. This has ever sign of a genetic issue at this point, so it wouldn't surprise me if we're replacing batteries and cleaning three sets of hearing aids by next year


It was a long road to find peace with all of this. We went through a grieving process of sorts with Aerik, and a slightly lesser one with Declan. However, they are both loved beyond belief and I know they're going to do well in life. I went through a point where I felt like it was something I did, or something I ate, or something I didn't do in pregnancy. But you know what? Everyone has challenges in life. If hearing loss is my boys' biggest challenge, I'll be thrilled for them. It's something that can be worked with, managed, whatever you want to call it, and it certainly won't impede them living their lives to the fullest.

When Aerik got his hearing aids, he started taking an interest in piano. We put him in a community pop band in a non-profit organization. The instructor pulled me aside after a few weeks and said that Aerik has a true gift for music. He learns at an astounding rate and can go very far if he wants to. That in itself is impressive, but when you figure in his hearing loss, it brings a smile to my face every time I think about it (Beethoven, anyone?
). I'm even more proud of their accomplishments. Everything has a silver lining if you look for it


That's our story. Sorry it's so long! And I hope that things continue to go well with your son. I'm happy that you're finding some resources!
 
#64 ·
Quote:

Originally Posted by deleria
Everyone has challenges in life. If hearing loss is my boys' biggest challenge, I'll be thrilled for them. It's something that can be worked with, managed, whatever you want to call it, and it certainly won't impede them living their lives to the fullest.
so nice i have to give you a kiss.

that's the type of language we used to demystify my son's special needs.

this is your challenge. everyone has challenges--you can't always tell what they are. that kid that looks like they have it altogther--they have challenges too.
 
#66 ·
Legally I think it depends on where you live. In our province, the boys (and their levels of loss) qualify for a monthly special needs allowance. Their hearing aids and school FM systems are covered by the government, as are any necessary repairs and upgrades. However, in the province next door (where we're looking to move for a variety of reasons) the provincial health care program only covers up to $500 per hearing aid, very few extras and no monthly allowance for HOH/deaf children.

Some people may argue that hearing is like vision and that needing glasses doesn't deem a person 'special needs'. I think it depends on how much hearing /vision is lost and how that affects a person's life. I hope my children see their hearing loss as a small bump in the road, not a mountain they can't possibly climb. It's all in how you look at it, I guess.

And thank you everyone for your nice comments and for taking the time to read about my boys. I love talking about them
 
#68 ·
deleria, you are welcome

douwn_under, I know that. I have every confidence my son will succeed in life, it's more of a feeling of I could have helped him sooner had my pride not gotten in the way

A small update: the Deaf center a couple miles from my house is more than willing to work with us.
I have scheduled a hearing test at the Children's Hospital Speech adn Hearing Center.
Funny thing is we will be paying for this out of pocket and they require a doctors referal first
I am not sure why , but ok
This means I have to take Connor to the doctor and he has never seen his doctor yet. I am not one to run to the doc for every little thing, so I hope I can get him in
I have the therapist from the deaf center coming here in a week to help work with Connor.
 
#69 ·
Please make sure it's a hearing problem. My ds was misdiagnosed as hard of hearing, but wasn't.

There are so many deaf people who lead super lives and are happy I thik you can look forward to a happy life too. It sounds like your babe has some hearing so maybe less to be worried about than you think. Deaf people look like people living to me.

When my dd was first diagnosed a momma said to me go cry for a week and then stop and start learning. She was right.

So go cry for a week and then stop and start learning. It's going to be fine.
 
#70 ·
Quote:

Originally Posted by JesiLynne
Hi, some of you know me
some of you probably dont

This is my first post in here. I have some to the sad comclusion that my son is somewhat deaf. He is 2 1/2 and I have been senying this since birth. He was a hospital born NICU preemie and he failed 3 hearing tests before leaving the hospital. I didnt want to believe he was deaf, I justified my reasoning by saying " He was on phenobarbital, of course he isnt gonna pay attention to a hearing test."

But now there is no denying it, when he stands 15 feet from me and I call his name normally he doesnt even look up, I have to yell to get him to respond. It hurts b/c I feel bad when I yell for him

I know he can hear when you are close to him and he does say a few words, but moslty it is "close sounding " words

I wanna cry, I wanna yell at the stupid OB who never warned me about GBS, I wanna hold him, I wanna do everything just to make it ok, but then I stop and realize IT IS OK
We can work through this, it is just gonna take some time
As soon as the tax return comes in the are signing up for insurance and taking him to an audiololgist for a diagnosis
So if there are any other mamas here who have deaf children please point me in the right direction, books, videos, anything, please help me and my son


HUGS MAMA!
My son is legally blind and can only here from one ear, but that is a high levels as well. Although he is classified as legally blind, he passes toys hand to hand, picks crumbs off the floor LOL etc. The docs have been amazed, he has Colobomas in both eyes and a lazy eye. I will look for a poem someone gave me and post it, it is beautiful about having a Special Needs child. My son knows some sign language but we started early since he has a tracheostomy and new for sometime he wouldnt talk, he is 16mths and we have yet heard him cry or make any noise. It is sad to and extent, but we are so thankful we were chosen to be his parents! I'm sure you are as well. If you look in your county for a Developmental Evaluation Center, they will evaluate him for nothing and then get him tested and hearing aids or anything he may need to function in todays world. They have been wonderful for Jonathon! He gets Speech Therapy and PT thru them.
 
#71 ·
At 18 months my DD wad diagnosed with Moderatly-severe hearing loss. That means she has a 60-75 db loss. She was also a Nicu baby, but she passed her hearing screen! It is a year later now and she is doing great. We believe in the bi-bi method of language and education. That means that we believe she needs to have both ASL and English fluency in her life. Right now she can not access spoken English because of her loss, so ASL is our primary language. Later she may become interested in speech but we do not pressure her. She wears hearing aids and loves them but she only has about 30 spoken words. On the other hand she has more than 200 signs and signs 5 word sentances!
I would recommend Signing Time for yourself and for your son. It is a very easy way to increase vocab fast. You will need to learn real ASL not signed English so I would recommend finding a Deaf community center or a college to take some ASL classes from.
I really understand how hard this time of adjustment is, but you need to make sure you don't fall into the trap of denial. You child isn't just like everyone else, it doesn't make him worse, just different. He may never learn to have spoken language but that doesn't mean you can't know his thoughts and understand him. You are the adult and you need to meet his coomunication needs. He can't learn your language (at least not right now) so you must learn his. Only about 25% of Deaf kids ever have any understandable speech and 90% of adults who lost their hearing before age 3 use ASL as their primary language. I don't want these facts to frighten you, but you do need to know how important ASL will be in your son's life. Also, less than 30% of Deaf adults with hearing parents feel like they can have a real conversation with their parents. That is devastating to me. I know I want to communicate with my DD about everything in her life so I know I MUST learn her language.
I'm sorry if I have overwhelmed anyone, I am just very passionate about this subject! Feel free to PM me if you have any questions.
 
#73 ·
The book I read was called "Raising and Educating Deaf and Hard of Hearing Children" but I just returned it so I can't get the research bibliography, but I'll check it back out for you
I do know that the research defined "deaf" as a pre-lingual loss of more than 40 db, because that is severe enough to impair aural language acquisition.
 
#74 ·
fairejour - do you talk and sign? Or are you strictly signing? How did you make that choice? Does your DC have any words?

My DD developed language although technically it was laggin but of course we don't know when her loss occurred in the first four years of her life. Actually I have never run into anyone whose deaf child is not oral.

PS - so now I'm more confused. I though deaf was 90dcB or greater? So since we don't know when my DD's loss of 55 - 60 decibles happened I can't call her deaf? Not like I care but its so much easier to say and have people understand than to say "hard of hearing" or "hearing loss". Then people don't get the severity of it the way the word "deaf" implies.
 
#75 ·
I always refer to my dd as deaf because it's the culturally appropriate thing to say--the hard of hearing and deaf people I've met say that HOH and HI are not terms they like much.

I usually follow up with more details about what she can hear if the situation warrants it.

The first time I heard HOH in reference to my dd, I imagined a bunch of old men sitting around a room, smoking and yelling, "WHAT? I can't hear you! I'm hard of hearing!" It's a term I didn't and don't associate with my dd.

Jesse
 
#76 ·
Jesse, in my experience, "hard of hearing" is not a loaded word the way "hearing impaired" is. I would call Violet "hard of hearing" not Deaf, because she's not an ASL signer/culturally deaf.

It's funny in a Deaf culture class I took, we talked about how the expression "REALLY hard of hearing" meant opposite things to hearing and Deaf people. If a hearing person says, "She's ReALLY hoh" that means she's like, not hearing very much, like deaf. If a Deaf person says, "That guy is REEALLY HoH" that means they're pretty much oral, like a hearing person. Kind of a funny dichotomy.
 
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