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
Mother of 3, welcomed a new baby girl July 2011
I'm so sorry.
Best of luck.
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:
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
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!!
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!
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.
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!
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.
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.
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 :
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.
|it's that I feel like I failed him in some way|
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.
Originally Posted by indiegirl
Don't wait to purchase insurance, talk to your school district today.
Mom to 10yo Autistic Wonder Boy and 6yo Inquisitive Fireball Girl . December birthdays.
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.
They're not typos. . . I can't spell!
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.
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.
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
and twin babies too - almost a year old? wow!
How are you hanging in there?
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