Saturday, January 19, 2008

Through the Eyes of a Hearing Mom of a Deaf Baby

I really wasn't planning on blogging today, I think I need a rest after yesterday's activities, that and a very long,cold shower:) But, I visited a woman's blog, a hearing parent of a newly diagnosed deaf baby who currently wears hearing aids. I am giving you this glimpse of what we process in our minds before choosing the cochlear implant to help you understand that we are not trying to take away our child's deaf identity, we are just trying to help him/her have other identities, possibilities and opportunities. Parents are reaching out to the Deaf community, we need to be made to feel welcome.Take it away, Christina...


So, this blog is for everyone who thinks that I have "IT" together. On the outside, I totally do. Thank you notes are written, the house is pseudo-clean, I volunteer, and I put Cheerios in Waterford. I wouldn't call all this having "IT" together. I would just categorize all of that as ways I deal with not having "IT" together at all! It's like that MTV True Life show...except instead of True Life: I'm a Beauty Queen or True Life: Engaged and Underage (MY FAVORITE!!) my show would be called:

TRUE LIFE: I'm a Mom of a Deaf Baby Who Has No Idea What the Heck She is Doing


I was talking to my good friend on the phone yesterday. Our husbands were childhood friends, and I am lucky enough to call her my friend. We're both Mommys (she has 3 with one on the way...I call her my "Guru"), and we both are OBSESSIVE when it comes to scrapbooking. We were chatting about our journey with Christian, and she said "You and Chuck have had to make so many difficult choices in Christian's first year. We really admire you".

After we shared some laughs about our kids and families, we said our good-byes, and I got to thinking....we have had to make difficult choices, and I wonder everyday if I am doing the best thing for my kid.

I am having an INCREDIBLY hard time trying to figure out how and where my kid will fit into the "Deaf Community". I will be the first to admit that I KNOW NOTHING ABOUT THE DEAF COMMUNITY. I've been lurking on many DC websites, trying to learn more about my son's culture. I'm learning that there is alot of debate about being "Deaf Enough", especially when it comes to CIs and whether a family choses to use ASL in the home. I'm terrified of my kid getting rejected should we chose to get a CI. Sure, our plan right now is to mainstream him into our public schools. But what if he wants to go to a Deaf School? Will he be able to relate to the kids there? Will he be "Deaf Enough"?

Our family game plan has always included ASL. To me, it's a part of who Christian is. And that's just me. But, our family game plan has always included the hope for him to be oral and use spoken English as his first language. I've always seen this as a way for him to have a piece of both of his worlds. ..or is it? In all honesty, I am completely freaked out that the choices I am making today will impact his adult identity too. I would give anything to walk in Christian's shoes. Everyday I wish that I was Deaf so I could understand where he is coming from. It, for lack of a better word, SUCKS that I haven't got a clue about his community or his language. I'm the one who is supposed to be TEACHING him.

I know that you don't have to be a hearing Mom to a Deaf baby to have these freak out moments. And don't get me wrong, I just don't freak out over him being Deaf. I freak out over making sure I raise a strong, yet sensitive man. I freak out because I wish I would've paid more attention in gym class when we talked about the rules of soccer and football(I was a figure skater. If it didn't have sequins or glitter, I wasn't interested).

I know that all parents have difficult choices to make. And I know that there are a million and one families who would give anything to ONLY have to deal with the choices that I make everyday. I try to keep that in perspective. I try to make it a point to thank God everyday for my miracle baby. I also try to take a step back, and know that I'm doing the best I can. But, it's hard. I guess that's why they call Motherhood the toughest job on earth.

22 comments:

Christian's Mommy said...

Jodi, if only you could've seen me writing that post yesterday. I was a wreck. It helps to have a community of other Moms out there to know I'm not alone. And I know that Christian isn't either.

*have a wonderful weekend*
hugs.

Candice said...

So true. I think all parents make difficult choices, but when you are put in a situation that you cannot fully understand it makes those choices even more difficult. We had a biracial child in our homes and I struggled with understanding that & now we have Rebecca and I struggle with the choices that we make with her Ushers Syndrome. Are we doing enough? Was that the right choice? How do we do that? There's a million questions that I run through weekly.

I appreciate Christina for being so frank, because it is how so many of us feel. Thank you for sharing.

A Deaf Pundit said...

To Christina and to all other mom: Yeah, that's how moms think. When my mom found out I was deaf, she was distraught. She had the same thoughts and she wanted to make sure I had *language*.

My mother eventually found the Deaf Community and attended a meeting, which terrified her to no end. She told me that she was holding me in her arms, and she was hearing all of those strange deaf people making noises with their voices. An old woman was moaning in the front row. When she heard all of those guttural, bizarre noises, she felt like she wanted to jump off a cliff with me.

But she ended up okay, and so did I.. At least I like to think I did. ;)

All I can suggest is to do as much research as you can. I can recommend a few books if you want, and you should contact United Way to see if there's any local deaf services agencies around. A good deaf services agency should be providing ASL classes, and they can show you where the local Deaf Community is. That's all what I can think off the top of my head right now.

I think by the time Christian grows up, the "Deaf Enough" debate will fade away to something that's insignificant. Your child can use ASL, have a CI, and still speak and lipread. I see no reason why he can't, and more of us Deaf are seeing it that way.

As long you raise your child with confidence and with a strong foundation in whichever language he's most comfortable with, I think he'll grow up to be a great guy. From what I see here, he has a great mom. :)

All my best.

JJ/A Deaf Pundit

Dianrez said...

The toughest part of any parenting is accepting your child for who he is, not the ideal person you are trying to raise him to be.

Just give him all the positive experiences you can, including friendships with both hearing and Deaf children, and you are already giving him the tools to do both.

Eventually he will be making his own search and his own choices. He may have a little difficulty since you are obviously hoping for him to choose the Hearing side. Just aim for balance and ease in both communities and accept what he chooses as a sincere move. For yourself, cultivate personal friendships with Deaf community members...they are legion who appreciate these friendships.

I wish I had parents like you, but have always felt my parents' disappointment that, despite my upbringing, I chose the Deaf community as my main base. Now that they are gone, I am relieved not to deal with it anymore. That is a lousy heritage to have, even though I understand why they made the choices they did.

anna s said...

Wow. Tough! I totally understand where she is coming from. I could say I am walking in her shoes. My title would show as:

"Through the Eyes of a Deaf Mom of a CI Baby."

How in the world would I be able to provide my child continuous exposure to spoken language where everyone in our home signs ASL? I want my child to grow up in both worlds, and to maximize his use of his implant.

I felt so limited. I had to reach over to the hearing world to let them "adopt" my child on a regular basis. It is paying off up to today. He has opportunities for total immersion in a spoken environment when he slumbers over his hearing ice hockey peers for the weekend, dropping him off for day events with hearing families who do not sign, et cetera. This forces him to learn how to communicate in spoken English. This may sound cruel to some of the BIG D folks, but I sure as heck know what I am doing as I monitor his social emotional temperature if you knoww what I mean. He loves it. Never once he tells me no, mom, I dont feel comfortable. He always rushes over and dives in! Wow, I just couldn't do that myself. I am just way too DEAF (if you know what I mean???)

My original intent for this comment is to suggest this mother to take a beginning American Sign Language class taught by a Deaf instructor at a local community college or state university. After accomplishing this, go for levels up to four (4 semesters of fun filled ASL classes). It would be just three to four units a week. No biggie! ASL classes are always so much fun.

She will be surprised peering through the peeo hole leading into the world of the Deaf from just talking one ASL class under a Deaf instructor. She would then be able to know what she is doing by this type of slow immersion. I guarantee her that.

Awkward it would be by braving herself into the world, it pays off in the long run. It gets uncomfortable for me dropping off and picking up my son from his hearing friends' houses having to nod heads, to fake laughs making hearing mothers think I am understanding what they are saying, and exhaling a whole big cloud of held back O2 when back in my car. All the stress is worth it to enable my child access in both worlds with little or no assistance needed.

Yep, a job of a mother is definitely not easy.

Loudest Mom said...

Wonderful post by "Christian's Mommy". Thanks for sharing. We have four kids who are all deaf/HOH, and knew nothing about hearing loss when we had our first daughter. We found out quickly however, that if we chose to go the AVT/Oral route, we were not 'really' part of the Deaf world. We did make that choice, because for us (two hearing adults, in a hearing world) it made the most sense at the time. But, we agreed upfront that if it wasn't working for Delaney (or any of the other three), we would change directions.

The kids are all great communicators (after many years of Auditory-Verbal and Speech therapy and lots of work by everyone). However, when they swim, or engage in other water activities, the realization comes that they are STILL deaf. The cochlear implant does not take that away. I feel it just gives them a tool to function on a more global level.

Sorry so long- this topic is a tough one for me. I would never criticize a Deaf parent for teaching their children ASL, etc. because I understand that it is the most natural choice for their family. My hope is that in a short period of time, there will no longer be two 'camps', but a larger, supportive community. Too idealistic? Maybe, but I think it would go along way to helping new parents who are floundering to make decisions for their children. I know it would have helped us 8 years ago.

Great blog by the way! I've enjoyed reading it.

-Melissa

Karen Mayes said...

Yes, like Anna S, I am a deaf mother of deaf children, minus CIs... but my son functions like a hearing person and is mainstreamed, even with digital hearing aids. Like Anna S., I am too "deaf" so I feel a little awkward in the hearing world, nodding at hearing people at the school activities, etc. I have a deaf daughter who attends a deaf school. So I have two worlds to balance, for my children. It has been an interesting experience for my family so far... but positive one, to develop an open mind into two worlds and to realize that one size does not fit all at all the times.

Jodi Cutler Del Dottore said...

Christina,
I love reading your blog, we will DEFINITELY have to hang out one day! You can introduce me to the world of Coach and I will give you a tour through D & G :) Jodi
Give that boy a kiss from me!

Jodi Cutler Del Dottore said...

Candice,
I have no doubt that you are making the right decisions for Rebecca...but when we are in the moment, it's really difficult to know. Keep the faith...Jodi

Jodi Cutler Del Dottore said...

A Deaf Pundit...liking the tone a lot better today. See what a hot post can do for a woman! Jodi still rofl.

Jodi Cutler Del Dottore said...

Dianrez,
I really appreciate your honesty, these things are not easy to talk about...and I am sure they are helping Christina. Thank you, Jodi

Jodi Cutler Del Dottore said...

Dianrez,
I really appreciate your honesty, these things are not easy to talk about...and I am sure they are helping Christina. Thank you, Jodi

Jodi Cutler Del Dottore said...

Anna S,
Your voice is so important, I learn something new about your experience every time you post. Your son is one very lucky and beautiful boy. Jodi

Jodi Cutler Del Dottore said...

Karen,
You know it's so strange that we live parallel lives, in different circumstances. I completely understand how a language can be limiting as I had to insert myself in the Italian language. I give you a lot of credit...I think that when we open our minds, we can only achieve greater benefits and truly take the best from both worlds. Thank you for your comments, Jodi

Jodi Cutler Del Dottore said...

Loudest Mom,
I'm an idealist:)Working on it...thank you for your comment, Jodi

Aidan Mack said...

Hi,

I suggest you MOMS and DADS to read this awesome post:

Gift of Communication–ASL

You can contact Julie Rems-Smario at julie@deaf-hope.org. :o)

Aidan

Jodi Cutler Del Dottore said...

Aidan,
Thank you...Jodi (still recovering)

evilfirepixie8 said...

Christina-

Thank you for sharing your story. My parents were in the same situation you are in, 17 years ago. They chose to raise me oral, to mainstream me (hearing aids until the age of 14, then a cochlear implant when that stopped working for me) with english as my first language and ASL as my second, and I am glad they did. I go to school at RIT now, where NTID is also located, and I have been welcomed with open arms into the deaf community, which I have never known before. Not one of the hundreds of deaf people I have met have said anything negative about me being raised oral, not a single made a comment about me not being 'deaf enough'. I have only seen that negative attitude on the internet, my connection to the Deaf world at large. Never in person. Instead I have met dozens of people just like me- deaf individuals who are learning ASL for the first time in their life, who are being introduced to the deaf world, and many who transition between the hearing world and the deaf world easily enough. Instead, I get thanked when they run into a tough situation and need a friend to translate for them.

My parents have supported me through everything and have always been honest with me about my hearing loss. Do the same for your son and you will not have to worry. He will grow up to be a wonderful person with a great, strong personality.

Divided said...

Christina, Don't worry so much about which method is best...while you're checking and that will take some time...start learning sign language (ASL) and sign away with your son. He will be learning more words than the average hearing babies and be able to communicate with you much sooner than hearing babies. It is prime for your son to begin learning language (ASL was my first language and my family are all deaf...I did not start talking until I was 3 or 4 years old when I went to deaf school that is when my parents found out that I was hard of hearing). Yes, I can speak and hear quite well but in true essence I am culturally deaf and love my part of the world. But I also function in the hearing world..."function" at best. In the mean time you can investigate deaf schools that have early childhood program. Many start with children at the age of birth - 3 years old...many have great parent support programs too. Investigate...meet parents who enroll their children in program...compare and go with what you feel is best for now.
Good luck!!

Hearing Mom said...

From Hearing Mom,

I am a hearing mom too. My daughter is now 22 years old. My husband and I felt the same when we found out our daughter was deaf. We went through all of the same things. We had never met a deaf person prior to our daughter's birth.
The one thing that we DID do was to seek out deaf people in our community and take ASL classes right away. We began to learn her language as she was learning it herself.
Our daughter initially attended a preschool for deaf and hard-of hearing children till the age of 5 in which they used Total Communication which at this school meant using SEE and talking at the same time. That is what the teachers used. Then for kindergarten we mainstreamed her in public school in a hearing impaired class. There were three other kids in her class...all different ages.
It was glaringly obvious that "critical mass", normality, and full accessibility to language was missing as well. It was then that we made the biggest decision of our lives. We decided to uproot our family and move three hours in order for our daughter to attend the Deaf School in our state. Now believe me, it was not easy selling our home, leaving secure jobs, leaving our family, friends, and church. But I can tell you today, that it was the best decision we ever made.
After she started first grade, we noticed wonderful things.. Her frustration levels went way down and her language began to blossom. She was surrounded by deaf peers, role models, adults, teachers, and staff.
We have never once regretted our decision to raise our daughter using the language that comes most naturally to her which is ASL. That is "her' first language. We have also chosen to make it a point to not let this be about "us" but instead be about her life.
We had a choice to have a CI for her, but it was not something that we felt comfortable deciding for our daughter and decided to leave that up to her later if she so desired it.
So what has the outcome of this been. Well she has recently graduated Gallaudet University and is working full time in a job that she loves. She is surrounded by "her" Deaf Community and has friends all over the world.
Before she started working, she took time to travel Europe. She is extremely independent and self-confident. (Oh and her English skills....reading and writing are extremely advanced which I know is something that is always asked by people questioning ASL.)
We owe the bonds we have to our daughter to the Deaf Community that surrounded and supported us through all her growing up years.
So please parents before you go out and make a decision based on your own perspective of the world as "hearing and speaking" oriented, please get acquainted with Deaf mentors who are educated in ASL and Deaf Culture. Learn as much as you can, keep an open mind, and be willing to adapt to change.

I hope a hearing mom's perspective from the other side of CI's and AVT's helps. I wish you the very best!!

Paula said...

From Deaf Pundit: "As long you raise your child with confidence and with a strong foundation in whichever language he's most comfortable with, I think he'll grow up to be a great guy."

Now THAT is a brilliant statement and one that I, a now deaf mom of a now deaf daughter completely support! :) (We have had progressive hearing losses and are now bilaterally cochlear implanted after wearing hearing aids.)

Christina, hold your head high and do what you think is right. Your gut plays a big part in raising any child, deaf or not. My advice is to take your child's lead, if he is comfortable and doing well learning to speak follow your heart. If you feel ASL is necessary, do that too. Whatever you do, make sure he can communicate his feelings, wants, needs and desires easily to whomever surrounds him.

A self-confident child will be able to tackle all of life's challenges. I have several articles on raising a child with self-esteem in the Paula's Pearls free content area at HearingExchange.

Annette said...

To "hearing mom" ... I wish there were more parents out there like you getting the word out about their experiences with the Deaf community, ASL, and even the possible option of a school for the deaf in order to ensure total immersion to an accessible language for a deaf child. I have many deaf friends and a husband like your daughter...articulate in ASL,(some in speech), intelligent, many college educated, literate, comfortable with deaf people, but also able to function just fine with hearing people. And most importantly of all, they are happy and so appreciative of having ASL as an option to communicate.

Additionally, I don't think CI's and ASL have to be mutually exclusive choices for those considering the CI route. I would direct those doing research to Mary Koch's work on Choices In Deafness. A keyword search should get you there. She has quite varied professional experiences having worked using sign language at a school for the deaf and also as an AVT therapist. She founded an AVT program at John's Hopkins. What I like about her is that she is pro-language...not pro-speech or pro-ASL. She presents easily understandable information about language acquisition, cognitive development, and the importance of a child reaching normal milestones in this development in order to avoid delays.