My son is deaf......... - Mothering Forums
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#1 of 80 Old 03-21-2006, 07:20 PM - Thread Starter
 
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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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#2 of 80 Old 03-21-2006, 07:33 PM
 
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I just wanted to say I had to take my ds who is 2 for a hearing eval because he is speech delayed. My insurance wasnt wanting to cover it so I found that certain elementary schools will do it for free. The test was very cool. He sat on my lap in a dimmed room and toys that make noise would start up now and then and the tester would say his name at different levels. They check to see where he looks. Then they put something in his ear that measured something?

Mother of 3, welcomed a new baby girl July 2011

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#3 of 80 Old 03-21-2006, 07:42 PM
 
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Oh, mama. I believe there are 2 mamas here who have deaf children, IIRC. I'm so sorry. One of the first steps you need to take is to call your state's early intervention program, even though he's almost aged out of the program, they can point you to free resources and assistance. Contact your local ARC as well, as they can also offer guidance and help.

I'm so sorry.
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#4 of 80 Old 03-21-2006, 07:51 PM - Thread Starter
 
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Finch, what is an ARC??????????
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#5 of 80 Old 03-21-2006, 08:00 PM
 
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I have a friend whose son is a bit speech delayed. The early intervention services thru the state only work with children up to 3 years old here. She had to go thru the school system to received speech therapy for him. Maybe you will find the same situation. I'd look for early intervention services first. If he's too close to the cut off age for them to initiate an effective program, I am sure they will know where to send you!

Best of luck.

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#6 of 80 Old 03-21-2006, 08:02 PM
 
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I'm so sorry jessi. s I used to teach deaf children signlanguage when they were around two years old. they did great, totally normal kids. there's a whole community of hearing impared people. camps, schools, all that. You can do it, you're a great mom.
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#7 of 80 Old 03-21-2006, 08:04 PM
 
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I bet you are overwhelmed right now I don't have a deaf child, and I can't direct you to any specialists or anything like that, but I can encourage you! Don't be sad...don't waste your energy with anger....take this on as a challenge, and get through it. Your child's lilfe is not going to be diminished because he's deaf. All of your lives are going to be enhanced.
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#8 of 80 Old 03-21-2006, 08:06 PM
 
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not deaf myself, nor am i a parent to a deaf kid, but i wanted to post to let you know that i've been lucky enough to be included in the deaf community by some deaf friends, and that it's a vibrant, smart, and strong community indeed.

i'm sure that this might not be what you want to hear right now, and that this is a huge and scary adjustment to have to deal with, but i wanted to let you know that there are possible positives, too.

maybe there's a deaf network in your community, and you could meet some other parents with deaf kids, or deaf teens or adults who could share their experiences and give some advice?

in the meantime, your ds is lucky to ahve you paying such close attention to his development. figuring out good ways to communicate with him now can make a big difference with language acquisition in the long run!

good luck with everything!

Joyful, busy, often overwhelmed queer academic mama to an awesome toddler and:

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#9 of 80 Old 03-21-2006, 08:10 PM
 
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If he still has some hearing, hearing aids could work wonders!
Maybe see if there's a free audiologist that could atleast dx your son?
I had two friends who had tubes put in their sons ears at the same ages as your son from fluid build up and both finished their words in less than a week after the surgery.

I'd get into touch with your local deaf society they will have many things.
My dad's cousin is deaf (they grew up in the same house) he married a deaf woman and he's had a wonderfully full life mind you they are completely deaf I think your son might still have some residual hearing that might be helped with hearing aids...then there's always the cochlear controversial for deaf people who think that deaf is a culture not always a disablity.

8 might be enough
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#10 of 80 Old 03-21-2006, 08:11 PM
 
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Jesilyn, check out the signing time dvd's -www.signingtime.com. lots of libraries have them too. also, wherever you live, there is some sort of early intervention service available. birth to 3, all services provided. 99% of the time, there at no cost to the family (i think i've heard in SOME state, you have to pay something so i'm not entirely sure). having a hearing loss will entitle him to at least speech services.

i'll do some more research too.

oh, the signing time website has forums & there are a bunch of mamas with kids with hearing impairments over there. it's a very friendly bunch & they'll have tons of info for you!!
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#11 of 80 Old 03-21-2006, 08:44 PM
 
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hook up with your local Deaf community-- meet some Deaf people!
learn to sign
hook up with Early Intervention and your local school district

Your first priority is building a bridge of language between you and your child.

Power to you mama, you can do it. Don't wait!
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#12 of 80 Old 03-21-2006, 09:06 PM
 
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My dd1 is five and a half. When she was 2.5 we had her speech and hearing evaluated because she was not speaking in two-word phrases. Sure enough, she has a moderate hearing loss in both ears. She's deaf. Our whole world changed. Here are my threads, which chronicle what happened with us:

http://www.mothering.com/discussions...t=hearing+loss
http://www.mothering.com/discussions...Violet+hearing

You need to plug into your school district--even if he's not old enough to go to school, they will put you in touch with the 0-3 Program. You will qualify for a TON of services but you have to act quickly for some of the services, before his third birthday. State insurances or even school districts sometimes cover hearing aids. Private Insurance usually doesn't. Don't wait to purchase insurance, talk to your school district today.

The sooner you get him tested, the sooner he can begin experiencing the world. You will be amazed, he will be amazed.

I'm here if you need support. PM me.

Jesse
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#13 of 80 Old 03-21-2006, 09:23 PM
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Greetings from a Deaf mama!

My second daughter is Deaf. My parents are Deaf. My husband is Deaf. We are all completely, profoundly Deaf- our native language is ASL. BTW- my first daughter, who is hearing, also signed from birth, and has awesome language skills in both ASL and spoken english. Just wanted to add that. ASL is awesome!!!

The first, absolute first thing you should do is start signing!!! Just focus on building the connection with your child through visual language, the best of which is ASL (American Sign Language). Really, really focus on EYE CONTACT. So important for the Deaf child, and the Deaf adult. Develop that eye contact!! Learning for the Deaf child happens visually. Remember this essential concept thoroughout whatever path you choose.

Second- tap into the local Deaf community. The Deaf folk in your area are knowledgeable on all the local resources, ASL classes, events, hearing centers, playgroups, schools, etc. The Deaf community is really vital and active, at least in larger cities and communities in the USA. Feel free to PM me with your location, I may know of a Deaf school or other center near you, if you don't know of one already.

Just a heads up- The audiologist will steer you towards a medical perspective of deafness, (hearing aids/cochlear implants) which is not always the best approach. Depending on your child's level of hearing and interest in spoken word, you may or may not want to go that route. Other mamas I know have chosen to get cochlear implants. That is a whole another issue. Right now, you just need to adjust to the idea that your child is deaf. Then find out the level of hearing loss, and try to recognize your child's connection with the world- is he more visual? Or does he respond to the sound he DOES hear, and speak? Keep your child's natural abilities in mind as you think about your options.

But definitely, definitely start learning ASL, and surrounding yourself with Deaf people and other signers. Your child is probably really hungry for language at this point! Feed him!!

It'll be a long journey..... but so much of mothering is about accepting and being aware of our child's individuality. Your child's deafness is a part of HIS journey. It will all be well. Deaf people have happy, fulfilled lives. Well, as much as humankind is able to!
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#14 of 80 Old 03-21-2006, 09:31 PM
 
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You don't have to wait until you have health insurance. Call Early Intervention. He's young enough still, and they will help you with the hearing testing even without the insurance. They should also be able to help you figure out what services are available after your ds turns three.

Everyone else said everything else better and more completely than I could. Just don't wait because of money stuff, okay? We used Early Intervention for physical therapy and they were really great. The PT was better than the person we tried using insurance.


Divorced mom of one awesome boy born 2-3-2003.
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#15 of 80 Old 03-21-2006, 09:35 PM
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Oh- and if you're near a Deaf school, they always have programs for infants. Most school districts also have parent-infant programs for deaf children. So you'll probably be able to get support as soon as you contact the district.
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#16 of 80 Old 03-21-2006, 10:42 PM
 
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Oh good, I see some of the deaf mamas have arrived. Jesilynne, the ARC is the Association of Retarded Citizens, but their services are for ALL special needs people, not just those with mental retardation. We've gotten funds for equipment from them, they provide respite care, and lots of other services.

Like me and the other moms here said, get in touch with early intervention. They can really help guide you and provide free services.

I also agree that hooking in with your local deaf community is very very important. When my ds got diagnosed with autism, the first thing I did was get hooked in with the local autism society and find more autistic families in my area. They (the community of whatever specific sn your child has) are very good at telling you how and where to get what specific services you need for your child, who to steer clear of, and they are also great for support because they've been where you are, and truly know what it is you're experiencing. One of the biggest frustrations of being a special needs parent is your friends who don't have sn children often don't really get what you're going through. How can they? They can offer a sympathetic ear, but nothing compares to another parent with a child who has your child's same diagnosis, and KNOWS what you're going through.

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#17 of 80 Old 03-21-2006, 11:48 PM
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here's a link to the U of Michigan ASL Web Browser- it's great! look up some basic words and start signing with your ds!

browser here
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#18 of 80 Old 03-22-2006, 12:46 AM - Thread Starter
 
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Lou, I am there right now

Well here is the rundown of todays events
1. Had a talk with dd to tell her about ds. She understands and she went over and started talking to ds loud enough for him to hear her and she was signing to him as well
We do know a few signs other than the one we have made up over the past few years as a visual aid to teach ds to talk

2. Taught ds a couple new signs after watching the one dvd we have that has some signing in it, it was cute, he was watching and started signing along with it

3. I have spent so much time online today while the kids watched the dvd reading anything I can get my mouse on about ASL and organizations and such

Finch the ARC website isnt working for me, and I couldnt fine it in my phone book, do you possibly have a phone number????

Here's something very ironic for you
We moved in the begining of Feb.
We used to live 2 blocks from the WI school for the deaf
It is now 100 miles away

To clarify, we are taking him to an audiologist for a diagnosis ONLY, not a cure, not for implants until we know everything we can and work him and some pro's in the field of development for HH and Deaf


Ok now for a stupid question, where do I find my local deaf community
I am lost in a world of info

I really apppreciate this mamas more than you can know

ds had a lot of problems in his first year of life and I was bombarded with comments about my parenting ( or lack there of in thier opinion) and teasing about him being short or skinny or this or that
I think that is why I am so saddened by this

It's not that I think he will be less of a person, it's that I feel like I failed him in some way

I do feel better though and cried alot today for many reasons, both the pain and the happiness of what you mamas have said so far


Good news is that today he signed and counted verbally 1, 2, 3
that is more than he has done in months

THANK YOU :
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#19 of 80 Old 03-22-2006, 01:43 AM
 
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That's odd, the ARC website works fine for me. Here's the link to find a local chapter near you:

http://www.thearc.org/chaptersearch/

FWIW, you did nothing wrong. I'm glad you've had a good day. The diagnosis phase has to be the hardest one out there. When we were going thorugh the diagnoiss phase with ds I was just nuts and stressed out to the max. It sucked. We're here for you, we've btdt and you can lean on us.
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#20 of 80 Old 03-22-2006, 02:44 AM
 
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PM me where you are in wisconsin and I'll help you find local resources!
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#21 of 80 Old 03-22-2006, 02:49 AM
 
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do a search on deaf club wisconsin (or wherever you are now)

I found http://www.wi-deaf.org/

Look for ASL interpreters in the phone book, they can refer you.

that should get you started.
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#22 of 80 Old 03-22-2006, 02:51 AM
 
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I just saw this thread, and was going to suggest that you PM Lou....but Lou is already here

Quote:
it's that I feel like I failed him in some way
I really understand that feeling

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#23 of 80 Old 03-22-2006, 03:05 AM
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Yes, this is the hardest time. Diagnosis, acceptance, shifting gears..... Hopefully, once you connect to the local Deaf community, you'll be supported in the knowledge that you (and your ds) are not alone in this.

What state are you in now? I can see if I can find a email list for your area for Deaf/HoH events, announcements, workshops, classes, etc. There is often one in each state. If you're still in Wisconsin, I found this group- Deaf/HoH Outreach in WI- outreach

But definitely call the school district, or the early intervention program in your area. Once you get in the system, you'll meet teachers, other families, etc. and connect to the local Deaf community. Some communities have monthly gatherings at pizza parlors, coffeeshops... It all depends on where you are and how vital the Deaf community is. Usually more vital around Deaf schools, but maybe you're in a big city? It might be worth it for you guys to visit WSD sometimes, maybe try to find out their event schedule and go for a play, or an athletic event (sports are HUGE in the Deaf world) just to see what it is like. Visit the preschool, again, just to see other Deaf kids and adults, talk to other parents. Also good for your dd to become aware of her brother's deafness. Often Deaf schools host ASL classes and workshops for parents, sometimes they host or know of 'silent camps' where families go for a 'silent weekend' to play ASL games, tell stories, learn, and just develop community. Again, it all depends on how vital the community is.

Strength and openness to you, mama.
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#24 of 80 Old 03-22-2006, 05:48 AM
 
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Quote:
Originally Posted by indiegirl
Don't wait to purchase insurance, talk to your school district today.
yes, they have free audiologist evaluations. mine had all sorts of sign language stuff in her office too, so i assume they have support through the school system.

Mom to 10yo Autistic Wonder Boy and 6yo Inquisitive Fireball Girl . December birthdays.

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#25 of 80 Old 03-22-2006, 03:33 PM
 
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Just wanted to say, that I am here too. We just found out our 5 yo has progressive hearing loss. I feel like I failed him too, also NICU baby on pheno for awhile.

He also has severe allergies, will need glasses, and braces. . . And lets not forget, he is also EXTREMELY BRIGHT.

Sometimes we get so wrapped up in problems, we forget the other stuff ( I know I do!)

I will chat more later when the twins are down.

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They're not typos. . . I can't spell!
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#26 of 80 Old 03-22-2006, 03:54 PM
 
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jesilynn. hugs!!! i just wanted to tell you if u cannot find any info about ur state always call the suicide prevention line which should be in ur phone book and ask them for information. they have the most comprehensive list of organizations in the state. they can at least give u an address and phone no if nothing else.

i also wanted to say i have worked with the deaf community in the past and not until u enter their world would u know their world is just like ours - dancing and everything - just without sound.

i also want you to keep an eye out on some 'special powers' your son might have. it will amaze you how the other senses are much more heightened to deal with the loss of one.

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#27 of 80 Old 03-22-2006, 04:24 PM
 
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Jesi.

I used to date a guy who's parents were deaf. Through him and his family, I learned so much about the deaf community. I even got familiar enough with ASL that I could do some basic interpretation at my church (mostly songs that I could practice somewhat beforehand-the ex would then interpret the message).

All the best to you in this journey. I know of quite a few resources here, but that wouldn't help you much there.
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#28 of 80 Old 03-23-2006, 01:43 AM
 
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It sounds like your son has alot of usable hearing. So, although this is a big shock and it is scary and hard to know what to expect, when you get aids on that kid, he will probably shoot words out like a rocket.

So, I say, get that kid aids as soon as possible!!! I am excited to hear about what kind of programs you are finding in your area.

crazy that you moved away from the school for the deaf just a few months ago!!! Something special must be meant for you where you are now.

I moved a year ago away from the neighborhood that our miss lou here just moved to! and I sure need you lou!! I swear, when the taxes are done, I will come to see you. soooon. (Now I live way across town) But wow, my very own attachment parenting deaf mama. that is a very very very special treat.

Anyway, my kid is deaf. she is just barely 3. and started riding the school bus to school the day after her birthday! crazy! Even though the school is very structured and they sign, god forbid, SEE there, I do believe dd is getting great benefit from going. She has grown up so much in the past two months (I mean in a good way, signing more, talking more, understanding more, counting, excited about letters, etc)

So, jesilynn, I am so excited for you to find some great services.

Your local children's hospital (do you have one?) could also be a wealth of resources - at least tell you what your options are. Beware, for our children's hospital is very one- sided - but, so are the ASL people. Everyone is one-sided. And I HIGHLY reccomend listening to all sides, thoroughly, at least once. I made the mistake of camping out on one side and I feel like we missed some good opportunity. One thing you learn with a special needs kid is to NEVER let your stubborn opinion get in the way of getting your kid what they need. (my stubbornness has gotten me into way more trouble than anything else)

love to you, Jennifer
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#29 of 80 Old 03-23-2006, 01:51 AM
 
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hey - cdahlgrd - courtney, we don't know you do we? I just noticed that you are in seattle. What level is your son's loss? Is this new for you? or did you just find out that it was progressive? a progressive loss sounds so scary! I don't know why - as I have one who is all the way deaf - but something about not knowing how fast it is going and what to expect sounds kinda scary for me.

and twin babies too - almost a year old? wow!

How are you hanging in there?
Jennifer
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#30 of 80 Old 03-23-2006, 06:52 PM - Thread Starter
 
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Hi Mamas,

I will be posting an updaye in the next feew days

I am on to some very good leads, and one of them is 5 blocks from my house, so we will see

I am taking ds to the deaf center here in town to see what they have to ofer and the whole family is signing up for ASL classes
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