My son is deaf......... - Page 4

[deleria]

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!

[JesiLynne]

Amanda thank you for your story, Iit gives me lots of hope for Connor

[indiegirl]

Amanda! You are wonderful!

Jesse

[Oh the Irony]

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.

[JesiLynne]

I have a querstion, is deafness or HOH considered a special need? b/c I cant find a special needs website that lists it

[deleria]

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

[Down_under]

*

[JesiLynne]

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.

[emmasayshi]

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.

[angelamclamb]

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.

[fairejour]

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.

[indiegirl]

Originally Posted by fairejour

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.

Where did you get these stats? What are you quantifying as deaf?

Jesse

[fairejour]

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.

[4imprints]

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.

[indiegirl]

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

[pamelamama]

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.

[deleria]

Originally Posted by fairejour

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.

I want to apologize, because Declan woke up as I was typing my initial post and what I had to say didn't come out the way I had planned it. So, I'm editing! To me, it sounds like I was saying 'well, it's a good thing my children't aren't having a harder time than they are, then!'. but that's not exactly what I meant. It sounded rather callous and I apologize for that.

What I meant to say is that I find those stats surprising, but only from my limited experience with my two boys. Neither of them had hearing aids while learning early language: Aerik was 7 when he got his hearing aids and Declan will be 3.5 when he's fitted with his first pair in a couple of weeks. It just seems odd to me that children with as little loss as 40db could suffer so much in terms of language. I certainly understand it with a more severe loss, of course. Declan's loss is 47db in both ears and he was stringing two words together by a year, KWIM? Aerik's is in the 60 range (I forget the exactly number) and, while his sentence structure was delayed, he was doing very well pre-hearing loss diagnosis anyway. I'm definitely going to get my hands on that book and see what they have to say. I haven't read much on hearing loss so it would certainly be informational! Thanks

[4imprints]

I know - that statistic surprised me too. Especially considering I've never some in contact with someone who is completely reliant on ASL and is not verbal (that's what I took that statistic to mean).

The funny thing is my DD who is deaf/moderately hearing impaired (see - what word do you use?) was repeating some words before she was one. Of course I did see some delays because her cognitive abilities seemed to be realllllly behind (unbeknownst to us - because she wasn't hearing). But then my son who we think is alright (he was testing moderate but has improved to very boarderline - we think it was just fluid - test on May 10th!!!) isn't saying ANYTHING!!!! How strange is that?

Deleria - how verbal are your children? Do you sign all the time or only in situations? My daughter is very verbal (very - if you get my drift!) but I think her hearing is declining some more and I have come across situations where I think it would be important - but I don't want to use it on an everyday basis so that she becomes reliant on something she doesn't need at this point (my opinion only). For example, she was at a birthday party and she was across the room from me. She couldn't hear me calling and of course you can't yell in front of the other moms!

[dlcmama]

AWww Bless his heart! I'm sure he'll catch on very easily and great with sign language. It's just a beautiful langauage...

[fairejour]

My DD has about 20 words. We sign and speak because my husband and I are hearing. Our DD never uses words as language, she just says them along with her signing. She does speech therapy, but I think it is a waste of time right now. I show her a picture of a dog and say "DOG!" and she looks at me like I am stupid and signs dog. I feel like I could be using that time to teach her something new! But my husband always says "it is English so it is new to her".

As for Deaf adults, most have some speech because 20+ years ago ASL was forbidden in school. But when they are asked what their primary language is 90% say ASL. As for the speech, they only counted speech that could be understood by a stranger (and in that case my DD has only 2 words!).

The reason we chose bi-bi is because I have NEVER met a Deaf adult that grew up with ASL who wished they had learned to speak, but I every one (I know) who grew up oral wished their parents had given them sign.

Research also shows that kids who sign do better in all aspects of school including self-esteem. That they read at a higher grade level (a HUGE problem for Deaf kids) and the only place they don't out perform oral kids is in speech, and then they score the same!

I believe speech and lipreading is a talent some kids have but I don't think most do. I think that Deaf kids shouldn't have to rely on their weakest sense, hearing, for their education.

I really never have understood when doctors tell me to talk to her more. If I show a blind kid the same picture over and over will they eventually see it? We give blind kids braille why wouldn't we give Deaf kids ASL?