scared parent of newly diagnosed deaf baby

[Lexi's Mommy]

This week our 10 month old was diagnosed as having profound hearing loss. I don't even know what the correct terminology is... is it pc to call her deaf? This is all very new to me, and very overwhelming. She's my first, and learning to be a parent was hard enough before this! I have so many questions and concerns, I don't even know where to start... how am I going to learn sign language, how is SHE going to learn sign language, what should we do for her education, what's the best communication option... Any tips on how to cope with this? Advice, comfort, from hearing parents, or parents who are hearing impaired, on their life. Anything would help me. I feel like I've entered a whole new world that as far as I was concerned, never existed before.

 

[Malfoyish]

Hello, Lexi's Mommy and welcome to AD!

I am very sorry to hear your baby is hearing impaired and that this overwhelms you. This is a wonderful place to solicit many, MANY thoughts and opinions as to what you should do for your child at this point. Before I continue, please allow me to put out there that you need to make choices that you FEEL are right, but there are MANY options to consider - and some members here will perhaps try to sway you in one direction as opposed to another "unfavorable" option that they themselves don't believe in.

YOUR choice, though! You make sure you're well-educated and informed on any option before you make a decision - okay?

First off, a profound loss does classify as "deaf." I was born to two hearing parents with a severe loss that later on progressed into a profound loss. My parents immediately got me fitted for hearing aids and began to teach me to speak. Please keep in mind, this was 27 years ago and so MUCH has changed today.

Your daughter is still a baby - which means that right now you are going to have to make choices for her that will definitely impact her as she grows up. My advice to you is - TALK to your audiologist. Discuss what your daughter's options are at this stage. I am positive that a full picture of your child's hearing loss has been provided for you at this point.

DO consider every option carefully. You can teach your child to sign, as well as speak. There are so many publications out there as to how you can approach teaching your child to sign as well as classes for you to take so that you're learning it as well. You can implant your child with a cochlear implant and use that to enhance your child's learning experiences from the very beginning and teach your child to speak. You can put off the CI until later on and see if more advanced technology is released. You can give your child the choice as to whether or not she'd even want a CI once she's old enough to understand what it is. You can fit your child with hearing aids for now and let your baby focus on just being a baby for now and tackle speech therapy later. The list goes on and on, but you need to make a decision very soon as your child, as we speak, is growing and developing. Education is not something you need to worry about until your child is of schooling age, so this is something that you can decide once you have a better idea of her capabilities.

You have my support, no matter which choice you make. I am available via PM if you have questions, thoughts or comments that you'd like to ask/say.

 

[ismi]

Welcome. Being the parent of a newly-diagnosed kid is always a bit scary.

This is just some general advice. Like any minority group, there is no one opinion w.r.t. 'appropriate' communication and education choices. I am severely to profoundly deaf, and I speak; others who have similar hearing losses may choose to cue or to sign.

The important thing to remember, though, is that ultimately this is your child's choice (when they're old enough to understand). If they choose to speak, let them; if they choose to sign or cue, let them do that, too. And whatever method or methods you end up using, learn along with your kid so you can provide support both in terms of language and in terms of general parenting.

Good luck!

 

[Liza]

LexiMom, just love her.

I'm my parents' firstborn, and they didn't expect me to have profound hearing loss either. They sought all kinds of advice from professionals including CI and education. They were so focused on getting what I needed for my future, they forgot to live in the present with me - just being with me, and just enjoying time with me... and to communicate with me... about the little things

You're in the right place to get all kinds of POVs from other members who are from all walks of life, though.

All I can say from my experience is just to nurture your baby's natural development and give lots of love as you can. Deafness doesn't mean the baby has mental development problems. My parents had my IQ tested at 120+ when I was 3 years old. I still think that test was fixed .. I think you'll do very well. Think it's very normal to have anxiety as first time parents?

I also learned that all babies can learn signs at 10 months old. There are websites that I can dig up about that, if you want.

 

[MorriganTait]

If no one else has said it so far - you're gonna be fine, and she's going to be fine. It seems overwhelming I am sure, but many deaf people are rather proud of their culture and wouldn't change it if they could. I hope that gives you a little hope.

Do you live in or near a major metropolitan area? If so, you will have more options. There are sort of two camps: signers and oralists. IMHO there is not ONE best form of communication - only what is best for your daughter and your family. Many people advocate a combination of oralism and sign - this works well for some too. Because you found out so early, you will have many years of being able to work with her deafness and help her learn with that in mind. Imagine if you didn't find out until she was 4 or 5 years old. If she has any residual hearing, hearing aids may be a good option - there are some great new technologies out there. You will also probably learn about Cochlear Implants - there is a lot of contorversy about these - I won't get into it - you have to do what is right for your daughter.

Possible resources in your area:
Audiologists - but be prepared for a strong bias in favor of oralism
Social Services agencies, local agencies for the disabled, Goodwill Industries

Yes, it's ok to say "deaf" - just never ok to say "dumb".

You're going to be ok - you really are. American Sign Language (I am assuming you are in the US) is a unique, rich, fully separate language, and just like with anyone who speaks a different language, there is a vibrant culture that springs up in deaf communities. Many of us who hear never get to glimpse into this world - but when we do, we see it's far from lacking.

 

[GalaxyAngel]

Lexi's Mommy,

Welcome you here...

I'm born Deaf. I grew up Deaf School and speak sign langauges easier communcation with other Deaf Students and Teachers too. Until I heard about ci and planned go forth but turn it out doesn't want get ci reason concern of menigitiies.

I'd rather stay firm as Deaf who am I reason knowledge surrodings Deaf Cultures. Accept who am I .. I really love it. I have wonderful 3 children who they are hearing and as We are Deaf Parent. We can communcation w/my 3 hearing children.

Up to your choice research ci or stay that way for Deaf Child.
Try visit Deaf School.. you'll see it and what best interest for your child's future attend Deaf School in your homearea or other area loction depend where..

Wishes you have great luck.
Don't need panic, you have Deaf Child.. you'll love her every minutes..

 

[Terri_7]

lexi's mom

Lexi's mom,
I think the bestest gift you can do for your baby is to give her permission to be Deaf.

 

[Chrysanthe]

Utah resident here....

Lexi's mommy


I am one of Utah residents. We have pretty good program for a family who have deaf children. I believe it is called Parenting Infant Program. It is a program for a family who have no idea about the deaf culture, language and identity. I strongly encourage you to get a mentor to come to your home and teach you and your family. It is very effective and I know almost every hearing parents who is having their mentor coming their home. I believe it helps a lot! So maybe you can private message me. I have so many things to tell you that Utah will offer.

I suggest you not go to Utah school for the deaf. I suggest you to explore and find what is the best for your child.

Let me find a website for PIP will be posted later. I need to ask a friend who work for PIP. Hang in there!!

 

[zookeeper4321]

Hello and welcome. I'm a mother of four 18, 9, 2 and 1. Little G is 2. He is Deaf. We were shocked and scared when we found out also. Every state has an early intervention program. Mine is called first steps. They will provide free or low cost therapy. We have a speech therapist and numerous other therapists. They also pay for hearing aids. In my state the Pip program mentioned above is a part of first steps. We use them as well. Our therapists have been very willing to work with our choice of communication. They have also been flexible as we learn more and change our minds. Check your local library for signing tapes and DVDs. My toddlers both started signing at about 15 mo. Unfortunately the hearing child picks it up quicker. The whole family is learning. I find I do better with the kids DVDs than ones made for adults. "Signing Time" is a fantastic series. Website Singing Time.com I believe. "Talking Hands" is a great video, I'm not sure if it's on DVD. I also believe "Baby Einstein" has one now. Your Pip and First Steps can also loan you DVDs. Sometimes parents of Deaf children can audit a university signing class for free with no credit given. You State Deaf School can also hook you up with signing classes. My Pip is thru the state school and they offer classes at a huge discount if your in Pip. Sometimes First Steps will have names and numbers of parents in your area willing to talk to you. I'm always available, pm me. We have been overwhelmed with all the choices. ASL, Signed English, Oralism, Public School, Private School, State School for Deaf. I can't tell you what's best because it's different for every family. Talk to as many people as you can and go from there. You can always change your mind as you go. The people here at AD have been very kind and helpful to me. Enjoy and good luck.

 

[Cousin Vinny]

Every state has an early intervention program. Mine is called first steps.

In no small part and huge thanks to the NAD in pushing the Infant Screening legislation through Congress a few years ago! Check out the NAD's take on Infant Screening--Most likely that's how Lexi's parents found out about her deafness. My strong recommendation is for the parents to contact their statewide agency in charge of this program and seek further guidance, resources, and direct assistance.

Of course, AD and its membership body is a great resource for parents in dealing with their Deaf/HH children, if I do say so myself!

 

[Dannie]

There's nothing to be scared off, really all our fear is learned!

Because if your scared now, it's going to continue to hinder the relationship with this child of yours even when he's grown up, many of us will attest to that!
I'am I'am not even deaf, I wish I was though because the deaf people have it way easier than the HOH people because they have their own language, and their own culture.

30 years ago, doctor's usually told parents with a deaf child that he won't amount to anything, and they should abort. Nowadays we have a deaf city in Laurent, South Dakota, we have deaf doctor's, lawyers, one deaf person's an Executive with Warner Brothers, lots of them are in filmmaking, but it's the deaf people that are able the most to strive better than the HOH people because of their culture, and the hOH people are divided from both hearing and the deaf.

Be proud of your child, go to baby-sign classes, have pride in this new culture your child will partake in, don't be overbearing but be joyful of who he is. He is a part of you, but he's also a different person. Celebrate who is his. Don't live off of the fears, don't develop them into big mountains and worry over the future that doesn't exist except in your mind, make it bountiful and fulfilling, celebrate the joyous occasions of the love in your family and remember that the fear people have is learned! The Deaf Culture is more vibrant than the hearing world, honest to God.........go and meet them.

 

[deafdyke]

I don't even know where to start... how am I going to learn sign language, how is SHE going to learn sign language, what should we do for her education, what's the best communication option... Any tips on how to cope with this? Advice, comfort, from hearing parents, or parents who are hearing impaired, on their life.

Hi and welcome!!!! I know it seems overwheming at first, but you've taken the first step by posting here! For communication options......I think that the majority of dhh kids should start out with both speech and sign for early intervention. That way if they don't have a flair for oral skills (and many don't.....a lot of oral sucesses are the result of VERY intensive speech therapy techniques, and good speech therapists are hard to find) they won't be behind in learning Sign. Also, if they have the flair to learn to speak, time won't be wasted. Makes sense eh? Some advice.....Look on learning Sign as a cool thing that will enrich your child's life. Too often parents buy into the stigma of Sign as being special needs. Join the American Society for Deaf Children:http://www.deafchildren.org/asdc/, and contact the Utah School for the Deaf..... they'll have a lot of good resources and information for you!

 

[Cloggy]

This week our 10 month old was diagnosed as having profound hearing loss. I don't even know what the correct terminology is... is it pc to call her deaf? This is all very new to me, and very overwhelming. She's my first, and learning to be a parent was hard enough before this! I have so many questions and concerns, I don't even know where to start... how am I going to learn sign language, how is SHE going to learn sign language, what should we do for her education, what's the best communication option... Any tips on how to cope with this? Advice, comfort, from hearing parents, or parents who are hearing impaired, on their life. Anything would help me. I feel like I've entered a whole new world that as far as I was concerned, never existed before.

Hi,

Welcome to this messageboard.
Me, I'm the father of three children. The first two are hearing, the last one is deaf.
Even though we thought she had problems hearing, it came as a shock to find out she was deaf (3 yaers ago). When it was official (funny how it needs to be "official before one acts) we immediately bought sign-language books and started signing. You should do this as well. No matter what you decide later, signing is a beautiful way to communicate and children pick up real fast. Babies (hearing also) that are used to sign will sign "milk" before they would be able to speak.

In short, she got HA's to see if that would help her but she never has any use for it. Living in Norway, the government offers CI. (all expenses payed) and we took the offer for several reasons.

Now, 1-1/2 years later she communicates using speech and is improving every day.

I just want to give you quickly the experience of me as a hearing parent, with hearing family and friend around me.
I have never been "exposed" to deaf people until my daughter was diagnosed "deaf". Since then I met many deaf/Deaf people, enjoying the experience of meeting that culture and of learning sign language.

Since you said you were "overwhelmed" I assume that you also have no experience with deafness.

Well, rest assure, it's a beautiful journey when the shock passes. And on this website you will find lots of information.

Feel free to ask anything.

 

[RainGurl]

Hi Lexi's Mom, I am a mom of 3.
I know for myself, finding out that two of my girls were hofh (hard of hearing) [moderate to severe 71 dh DL] was quite the shock. First it was a bit of," Great they are going to go through what I went through." Then it was a bit of," Where do I know from here?" Eventhough I am hofh, and my mother is also finding myself in a situation where I felt both disappointed and grieved. You see, I didn't find out until my middlest was 2 1/2 and my youngest was only 6 months at the time. I went in because I could recongize that my middlest had a speech delay and then my youngest had passed the infant hearing screening test (I felt that she needed to be retested). Testing them BOTH on the same day, it was double the shock.

Be YOUR CHILD'S MOST POWERFUL ADVOCATE.
That is the number one thing I can stress to you.

Educate yourself as much as possible. You decide from your heart of hearts
what is best for your child. ASL is awesome! My two girls are very FLUENT in ASL. As I am. It will be a learning in progress. Just as your child is learning, you are as well. My youngest teaches her Grandma how to sign all the time. My hub is also always learning new signs from her. She comes home and shows me, it's like a child learning his/her first word. It's amazing!

Relax (trust me, getting stressed out doesn't do anyone good espeically you and your child).

Support - get involved with those that support your decisions, and if you decide otherwise will stand by you and respect your decisions/beliefs.

Remember ONE VERY IMPORTANT NOTE: God never gave you too much to handle. There is a reason that He gave you this child. For me, I realised that yea sure I was disappointed but He knew that I would fight for them and they would get nothing less than the child next to them that can completely hear. Equality is so important. You are Mom, you will always be Mom.

Welcome to AD, I look forward to meeting you throughout the posts!

Sincerely, Heart2Sign

 

[Fabian]

Exactly. Also let remember that not matter how your child were born, it is still your child, your blood and your pride. Be a mother to your kids, and they will thank to you later. There is nothing to be scare, there are ways to support you during the development of your child. You can find palces and schools where they can help you but at the same time you will also learn valuable information. Be strong and love your children not matter what.

 

[highlands]

This week our 10 month old was diagnosed as having profound hearing loss. I don't even know what the correct terminology is... is it pc to call her deaf? This is all very new to me, and very overwhelming. She's my first, and learning to be a parent was hard enough before this! I have so many questions and concerns, I don't even know where to start... how am I going to learn sign language, how is SHE going to learn sign language, what should we do for her education, what's the best communication option... Any tips on how to cope with this? Advice, comfort, from hearing parents, or parents who are hearing impaired, on their life. Anything would help me. I feel like I've entered a whole new world that as far as I was concerned, never existed before.

I'm sorry to hear that your baby is profoundly deaf
I'm sorry if I disturb you but didn't the doctors tell you about Cochlear Implants ?
Of course ,there is nothing wrong with having a deaf baby.. I only want to inform you that Cochlear Implant may help with your child to have some of hearing world..

 

[DeafInTX]

To Lexi's Mom:

This is an extremely difficult time for you right now, but I believe that God (or whatever Higher Authority you believe in) gave Lexi to you because He knew that you had the strength and compassion to do what is right for her, and He will help you make the right choices. So hang in there....

First, you are going to be getting a LOT of advice, and many people are going to be trying to sway you to go in a particular direction as far as communication and education options are concerned. It's going to be very confusing. I suggest you read a book titled Choices In Deafness; it will give you unbiased information about the choices you have. I found a copy at my local library, and it was just recently revised so it should still be in bookstores. I think it will arm you with the information you need to make educated decisions about Lexi's future.

I would also encourage you to begin learning ASL and teaching it to Lexi now, regardless of which communication choice you eventually make. I'm a Deaf Education student, and all of the language development courses I have taken have emphasized the point that language-learning begins the day we are born. The deaf child who does not hear spoken language and isn't getting language thru sign or some other form is going to be at a disadvantage, and the longer she goes without language, the harder it is to catch up. And don't let anyone tell you that Lexi will never learn to speak if she learns to sign; that's just not true. In fact, I did a research paper on children learning sign language; studies have shown that hearing children who learn and initially use signs have a larger spoken vocabulary and higher level of language development at 2 years of age than normally developing hearing children who did not use signs.

If you need further information, or just encouragment, let me know.

 

[Lexi's Mommy]

Wow, I posted my message and just left it until now, and I'm amazed at the great feedback. I;ve actually spent the last day or so reading other posts on this site. I feel like I've learned so much already about the deaf community from just this site. I'm very excited now for this new road we're going to be going down. The words of encouragement everyone have posted are amazing. Yes, I think we have decided that no matter what we choose as a family for Lexi, first and foremost we all need to learn sign language. That seems like, no matter what else we choose, to be a benefit. I'm also seeing that there is no reason that Lexi can't thrive in the "normal" community (of course, what is normal, really?), plus she gets to be a part of a very special club, the deaf community.

Thank you everyone for your advice. I'm still open and eager to hear anymore advice/helpful links/opinions that anyone has to offer, but I think that "scared" is out of my vocabulary...

 

[DeafInTX]

Congratulations on your decision to learn ASL. If your looking for an inexpensive way to get started, visit the Captioned Media Program website:
www.cfv.org
It is a video library of movies and educational videos, and they have an impressive selection of ASL videos. Registration for the service is free, and there is no charge for borrowing the videos. They are mailed to you and CMP even includes a prepaid return postage sticker for when you return the video. Eventually you will want to find deaf people to sign with or take some classes, because it's difficult to really learn to converse in ASL from a video, but you can learn the vocabulary that you need to start teaching to Lexi.

Good Luck!

 

[Cloggy]

..................
Thank you everyone for your advice. I'm still open and eager to hear anymore advice/helpful links/opinions that anyone has to offer, but I think that "scared" is out of my vocabulary...

Excellent.... replace it with "exited".

Looking forward to read about the questions that will pop-up.

Cloggy