A Shared Experience

Last night Christian's school hosted a panel of young adults with hearing loss. Panelists included a bright working Mom with a Cochlear Implant, a high-school senior with bilateral CIs heading to college next year (and who happens to be the head of school's son) and the infamous Josh Swiller. The conversation with the panelists covered everything from how they incorporated today's technology such as iPods and iPads into their lives with their CIs, what their experiences were growing up in mainstreamed schools as children with hearing loss, and what some of their challenges were socially. They spoke of what it REALLY feels like to be mapped, if they REALLY switch between their programs on their processors, if the REALLY take their CIs off to have quiet time. It was a really insightful and inspiring evening.

We had an interesting conversation about the role of American Sign Language, how people with CIs are viewed within the "BIG D" Deaf community, and the role of ASL and the culture of being deaf. I often find myself having to explain to people why we don't use ASL. I think there is a misconception out there that ALL "deaf" people use and need sign language. I also feel that sometimes there may be an expectation by some in the deaf community that despite our choice as a family Christian NEEDS ASL.  I want Christian to learn sign language one day. It will open up new opportunities and expose him to new experiences. Josh had an interesting take on all of this. He suggested that "Rather than deafness being viewed as a culture, it should be viewed as a shared experience". I couldn't agree more.

With all of these debates, I often feel as if I am constantly on the edge of a beautiful pool. From the edge, it's gorgeous. It's vast, and deep, and I know that once I'm in it, I will feel refreshed and relaxed. Before I jump in, I dip my toe in just to test it and I quickly jump back because the gorgeous beautiful pool is actually freezing cold. I step back, and while on the surface it is glistening, the deeper it gets, the murkier the water becomes. I know one day I will take the plunge, but for right now I'm ok enjoying the pool deck with a cocktail in one hand and my Nucleus 5 remote in the other.

Sick to my Stomach

I really struggled with cross-posting this video. It's been going around on several hearing loss list-servs this week, and I know many of my D/HOH friends and CI Mommas have seen it. This blog is intended to be used as a resource for parents and also as a celebration of the miracle of the Cochlear Implant. I try to include information that is helpful for other families going through their own hearing loss and Cochlear Implant journey. I love sharing our milestones with Christian and also sharing our challenges.

I'm not even going to get into the debate of to implant or not, however this video profoundly impacted me. I felt sick to my stomach watching it. I sobbed. I wept. And all the while, I somehow understood this man's perspective. Unfortunately, hearing parents of deaf babies are misrepresented in the most grotesque way. I have been told in the past by radical members of the Deaf community (a community which I have found in the most part very welcoming) that we were "raping" or son and that we would "go to hell" for implanting him. I've been told that I "stole his identity" and that I am a "horrible parent". All that for giving my child the ability to listen and speak. My son's Cochlear Implant does NOT make him hearing. It helps him listen and speak. My son will ALWAYS be deaf.

I've learned in the past year or so after forming many friendships with deaf adults who use Cochlear Implants that there are members of the Deaf Community who are terrified of LOSING the next generation all together thanks to Cochlear Implants. My son IS the new Deaf generation. He listens. He speaks. He sometimes even signs. And some people are terrified of him and the 1,000s of other children growing up with the miracle of the Cochlear Implant.

Take this video for what it's worth, and watch it to the very end.
*And, yes, I still moderate my comments, so if you want to spread hate, do it somewhere else. The last thing new parents of deaf babies need to be exposed to is the hatred and negativity of the very few radicals who lurk on these blogs.

Enough is Enough.

This blog was always intended as a place to share my ups and downs as a hearing parent to a deaf child. It was designed to be a spot to highlight our journey, pass along tips and resources, and to just be a place where I could share the beautiful moments that I share with my son. I've met some amazing people, and formed some lifelong friendships through this blog. It has been a blessing in my life.

This blog was NOT designed to become a forum for the Deaf Community to ridicule and judge my decisions. Over the months, I received comments from people accusing me of raping my child by giving him a Cochlear Implant. My communication methods were judged. The choices I made, the things that I said, EVERYTHING was judged. Judged by a community that I so desperately want to be a part of and understand. In my post today about the Deaf Child signs that are being placed, I was pretty much accused of being a lazy parent relying on signs for my kids safety. It even accused me of treating my kid like a wild animal.

Congratulations, Deaf Community. You've just pushed another person away.

While I know that the entire Deaf Community is not like this, there are a few vocal and loud folks who always seem to find a way to rain on a Mom's parade. Who feel it's their place to tell a hearing parent how to raise their child. Who feel that somehow, they could do a better job than me. I've sucked it up, I've taken it all in stride. Until today.

Comments that were left on my blog today make me sick. They show just how divided the Deaf Community really is.

There's only so much of this I can take. I'll be moderating my comments for now on. I don't want this joyful site to turn into a hate-filled place.

Father Knows Best...

I was just venting to Chuck this evening about something that has been really weighing on me.

Every so often, our blog will receive comments from people telling me that I am ruining my kids life by giving him a CI, or I'm not being true to his identity by teaching him to speak. I know having this blog out in the public domain opens up our life for comments. When it first started happening, I could deal with it. My skin may have been a bit thicker, and I was ready to go on the defense. Now, when things like that happen, all I want to do is scream at these people and tell them they have no freaking idea what we go through as a family. In the beginning, I didn't really care what these people thought about me and Chuck. Now, it matters to me. It matters because like it or not, we're a part of the deaf community.

I have all these thoughts swirling through my head. Will Christian be accepted into the deaf community? We've tried so hard to expose him to both the hearing and deaf world. Christian is just as deaf as the rest of them. This little boy, without a CI or his aids, can't even hear a jet engine next to him. We're teaching him sign language. What if he choses not to use it? Will he be an outcast?

We want to give Christian the best of both worlds. I want him to have the ability to live in both communities, should he choose. I want to be able to give my son the best. THE BEST.

I was venting this all to Chuck, and he said to me "All that matters is what is good for Christian, and we know what is. People are going to judge us, regardless of what we do. Who cares. We know what is best".

For those of you who know my husband, you know he is a man of few words. But when he does talk, everyone stops and listens.

So, on this Father's Day, I'm thanking God that I have the best husband in the world. He always manages to keep everything in perspective. Christian is SO lucky to have him as his Daddy.

Beautiful

I couldn't wait to share this here on the blog. I think it has an amazing message, regardless if you are Deaf or hearing. D-PAN is doing some wonderful things. I can't wait to share this with Christian when he is a bit older. It makes me so PROUD.

The Difficult Choices...

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.

Waiting on the World to Change

This morning, we all went to our monthly Deaf/HOH Parent Group at Rock Creek Valley E.S. Todays program for the parents was "What is Deaf Culture?". There were 4 Deaf Panelists, and Chuck and I learned so much. It was very interesting to hear about these individual's life story, and their perspective on being deaf in the hearing world. It was a very positive experience for us...and I am so glad that we both were able to go.

Up until Christian was born, my experience with Deaf people was VERY limited. In high school, I taught skating to a group of deaf kids. I learned the ASL signs for Glide, Stop, Jump, and spin. In college, I would see some Galludet kids out at Union Station from time to time. When I was working, I would often help out the Deaf/HOH with arrangements at the various conferences, meetings, and events that I planned. But that is it. Just as it's a challenge for me not know Christian's language as well as I want to, it's also hard not being familiar with his culture. Regardless if his hearing level, whether he's aided or has CIs, if his signs, cues, or lip-reads, HE IS DEAF. I've been so worried about helping him understand, navigate and find his identity in the Deaf Community. One of the panelists today (who is deaf herself and has a deaf son), addressed this very issue, and made a wonderful point. He'll figure it out. He'll decide. And he'll see what he is comfortable with. Until he figures it out, I just want to give him access to his language, and support him.

We saw this AMAZING video today too, by the Deaf Performing Artists Network that I wanted to share...enjoy:

Waiting On the World To Change

***By the way, D-Pan is based out of MY HOMETOWN! For all you Detroiters, you'll notice a couple of our newscasters in the above video. *****************