Check out our featured article in Hearing Loss Magazine!
Christina Marmor Article-1
Our Family's Cochlear Implant Journey
Showing posts with label advocacy. Show all posts
Showing posts with label advocacy. Show all posts
Thursday, September 9, 2010
Tuesday, May 4, 2010
Celebrate Communication
I represented the company on my own in the booth, and while I was a little nervous at first, I found that the folks who were stopping by were either already users of one of our products OR were interested in learning more about the candidacy process. I had to preface a couple of answers with "I don't actually WORK for Cochlear, but I am a parent of a very successful user". Many folks stopped by to see the new Nucleus 5, and to learn how they could upgrade their Freedom or older processors. Which, by the way, we are currently working on. Cochlear has a wonderful program for existing Freedom customers and they are currently working with our insurance company. How NICE it is to not be the one fighting the insurance company directly these days. Our fingers are crossed that they will approve the upgrade, as we honestly believe the Nucleus 5 will improve Christian's life even more than what his Freedom already has. If insurance doesn't approve, Chuck and I are going to continue playing the lottery. CIs are CRAZY expensive!
It was great to see so many familiar faces and friends. My good friend Mike who wears bilateral Cochlear Implants from a competitor company kept me company and even watched my booth while I escaped for lunch. It takes a lot for this Maryland Momma to cross the Potomac and hang in Virginia, but I am so glad that I did.
Thursday, November 5, 2009
Another Fantastic Resource
I contacted The Children's Legal Advocacy Program that AG Bell sponsors earlier this week with some questions and concerns regarding the level and type of service that Christian is receiving (and proposed to receive once he turns 3). Within 24 hours, I had an email back from an attorney that supports AG Bell. The next day, I spoke with an attorney who specializes in Special Education law, with a concentration in Oral-Deaf education. For over an hour, we discussed my family's concerns, and I left the phone call with some really useful tools and insight, as well as reassurance that our family would have the support and expertise of the attorney and the program. While I wish I didn't have to contact them in the first place, I am thankful for AG Bell sponsoring this program.
Tuesday, June 23, 2009
Back and Completely Inspired
I think it's safe to say that I experienced every single emotion possible this past week when I went to Nashville for the HLAA conference. I am beyond thrilled that I was able to attend, and learned so much that will help me in my journey as a hearing mother to a deaf child. Many tears were shed, mostly tears of joy.
I had the opportunity to attend some really great sessions and workshops, including the Research Support Symposium that focused on Hair Cell Regeneration. I cruised the exhibit hall everyday and visited with some really interesting vendors that included both our hearing aid and CI manufacter, and several different assistive devices that one day we'll need with Christian. I even had an opportunity to chat with some representatives from Gallaudet about my interest in their SLP program.
While the exhibit hall and the workshops were extremely informative, the connections that I made with other attendees were by far the most valuable component of the entire conference for me. I had the wonderful opportunity to FINALLY meet my online friends Abbie, Jen, and Laurie. These 3 ladies have been such a support for me during the past 2 years, and I was incredibly grateful to finally hug them in person. Abbie and I are very much alike in so many ways (we've always joked about that in blog comments and emails), but it was confirmed on Friday when we realized we had the same cut and highlight :) Jen welcomed me with her signature smile, and I had such a fun time out to dinner with her and beautiful family. And Laurie always seemed to be able to introduce me to the right person at the right time. My friend Mike, who lives in my area (and who nominated me for my scholarship to HLAA) made sure I didn't get lost in the hustle and bustle of the conference. I made some good friends thanks to their introductions!
I learned so much from these folks while I was there, and I am sure that they were all just about FRIED after all the questions I constantly bombarded them with. I think one of the hardest things for me as a hearing Mom is not knowing what exactly Christian hears (and doesn't hear). As adult CI users, they were able to give me their unique perspectives on the experience of wearing Cochlear Implants. My extent of socializing with CI users is the occasional CI playgroup that I attend with Christian. I really enjoyed seeing my friends interact with one another (and how we communicated together). There was one night when a group of us went to The Wildhorse Saloon. I was beyond impressed with how well everyone heard, and even was able to identify different instruments in the band that was playing. I of course, kept asking 'Do you hear the cymbals? What about the tambourine? Can you hear the lyrics?". I couldn't help it. My friends were such a great window into the world of Cochlear Implants, and the D/HOH community. I really appreciated their willingness to share their experiences, both good and bad with me. They welcomed me into their community with open arms (and ears!). I was worried at first how I would fit in, yet by day 2 of the conference, felt completely at home.
Attending the HLAA truly opened my eyes and my heart. As I was on the plane on Sunday morning heading back to my family, I thought back to the beginning of my journey with Christian. I was always so worried that he would feel alone. That he would be by himself, and on the outside. If I learned ANYTHING this weekend, it's that the miracle of the Cochlear Implant has opened up so many options for deaf individuals. It was a nice little glimpse into how bright the future looks for Christian.
Laurie, Abbie, Jen and I at the Birthday Celebration. This was one of the only pictures I can find of the four of us where we're not all laughing. We had such a fun time!
I think the only thing that the gang held against me was that we're a Cochlear family, and they all wore AB processors :)
By far, the funniest shirt I've seen. Abbie rocking the shirt!
I had the opportunity to attend some really great sessions and workshops, including the Research Support Symposium that focused on Hair Cell Regeneration. I cruised the exhibit hall everyday and visited with some really interesting vendors that included both our hearing aid and CI manufacter, and several different assistive devices that one day we'll need with Christian. I even had an opportunity to chat with some representatives from Gallaudet about my interest in their SLP program.
While the exhibit hall and the workshops were extremely informative, the connections that I made with other attendees were by far the most valuable component of the entire conference for me. I had the wonderful opportunity to FINALLY meet my online friends Abbie, Jen, and Laurie. These 3 ladies have been such a support for me during the past 2 years, and I was incredibly grateful to finally hug them in person. Abbie and I are very much alike in so many ways (we've always joked about that in blog comments and emails), but it was confirmed on Friday when we realized we had the same cut and highlight :) Jen welcomed me with her signature smile, and I had such a fun time out to dinner with her and beautiful family. And Laurie always seemed to be able to introduce me to the right person at the right time. My friend Mike, who lives in my area (and who nominated me for my scholarship to HLAA) made sure I didn't get lost in the hustle and bustle of the conference. I made some good friends thanks to their introductions!
I learned so much from these folks while I was there, and I am sure that they were all just about FRIED after all the questions I constantly bombarded them with. I think one of the hardest things for me as a hearing Mom is not knowing what exactly Christian hears (and doesn't hear). As adult CI users, they were able to give me their unique perspectives on the experience of wearing Cochlear Implants. My extent of socializing with CI users is the occasional CI playgroup that I attend with Christian. I really enjoyed seeing my friends interact with one another (and how we communicated together). There was one night when a group of us went to The Wildhorse Saloon. I was beyond impressed with how well everyone heard, and even was able to identify different instruments in the band that was playing. I of course, kept asking 'Do you hear the cymbals? What about the tambourine? Can you hear the lyrics?". I couldn't help it. My friends were such a great window into the world of Cochlear Implants, and the D/HOH community. I really appreciated their willingness to share their experiences, both good and bad with me. They welcomed me into their community with open arms (and ears!). I was worried at first how I would fit in, yet by day 2 of the conference, felt completely at home.
Attending the HLAA truly opened my eyes and my heart. As I was on the plane on Sunday morning heading back to my family, I thought back to the beginning of my journey with Christian. I was always so worried that he would feel alone. That he would be by himself, and on the outside. If I learned ANYTHING this weekend, it's that the miracle of the Cochlear Implant has opened up so many options for deaf individuals. It was a nice little glimpse into how bright the future looks for Christian.
Laurie, Abbie, Jen and I at the Birthday Celebration. This was one of the only pictures I can find of the four of us where we're not all laughing. We had such a fun time!
I think the only thing that the gang held against me was that we're a Cochlear family, and they all wore AB processors :)
By far, the funniest shirt I've seen. Abbie rocking the shirt!
Tuesday, April 14, 2009
Sharing the Miracle
I'm so excited to be speaking tonight at a local college about Christian's Cochlear Implant and our experience as a family. My good friend teaches a Sense and Perception class, and asked me to come speak about our journey. I've prepared my notes, and sent some handouts over to her to print. We're going to show Christian's activation video, and maybe something more recent demonstrating his amazing receptive and expressive language skills.
My good friends know that I usually have no trouble talking to complete strangers about anything and everything. When it comes to our journey with Christian's CI, I usually can go on and on for hours about it. Hopefully I won't bore these kids to death!
My good friends know that I usually have no trouble talking to complete strangers about anything and everything. When it comes to our journey with Christian's CI, I usually can go on and on for hours about it. Hopefully I won't bore these kids to death!
Friday, May 2, 2008
Because sometimes Us Weekly just doesn't cut it...
I came to DC when I was 17 to save the world. After countless internships of saving the world one envelope and pot of coffee at a time, I gave up my legislative dreams to work for the special interest groups as an Event Planner. I never lost my political interest, and still try to keep up with RollCall in between my other more important new sites.
One of the Mom's from MCAHIC just posted this update about the Closed Captioning Bill on our list-serv.
Congressional Quarterly today:
Bill Would Set Deadline for Updating Wireless Devices For Deaf and Blind
By Adrianne Kroepsch, CQ Staff
A senior member of the House Energy and Commerce panel signaled Thursday that he wants to set a deadline for the wireless industry to bring closed captioning to screens on handheld devices, among other changes that would bring newer technologies up to speed with the needs of the deaf and blind.
The warning — from Edward J. Markey, D-Mass., chairman of the Subcommittee on Telecommunications and the Internet — accompanied draft legislation that would overhaul decade-old laws that first required communications access for the disabled in an era of analog television and wireline phones.
The draft would address a host of digital hurdles for the disabled. Among many things, it would scrap a rule requiring closed captioning only for television screens 13 inches and bigger in an effort to bring captions to iPods, Blackberries and other personal mobile devices that play video.
It would require video producers to apply closed captioning to content distributed on the Internet, require electronics manufacturers to put a closed captioning button on TV remote controls and reinstate a law overturned in 2002 that required broadcasters and cable companies to make some programming audible for the blind.
The proposed requirements are sparking resistance from the communications industry that Markey called “eerily similar” to opposition he faced when battling to enact the original closed captioning law in 1990.
“We were told that mandating closed captioning would add $20 to the price of a TV set and that it was overly burdensome,” Markey said. In the end, he said, closed captioning cost about a dollar per set and became indispensable not only to the deaf and hearing-impaired, but to immigrant families learning English and to sports watchers in bars across the country.
Markey singled out the wireless lobby in particular on Thursday, asking carriers and device manufacturers to help him set a deadline under which to work out a slew of new standards governing communications access for the disabled. “We can set what the deadline would be, legislate that, then we can work out the standards. . . . It’s amazing how much people can get done under a deadline,” Markey said.
Since Congress took up the issue of disabled access in the 1990s, many new services have empowered the deaf and blind — such as text messaging, new audio functions on mobile phones, and instant messaging over the Internet. But as technology has advanced across the board, the disabled have continued to lose ground in a number of other ways, argue Markey and the proponents of his bill.
One of the Mom's from MCAHIC just posted this update about the Closed Captioning Bill on our list-serv.
Congressional Quarterly today:
Bill Would Set Deadline for Updating Wireless Devices For Deaf and Blind
By Adrianne Kroepsch, CQ Staff
A senior member of the House Energy and Commerce panel signaled Thursday that he wants to set a deadline for the wireless industry to bring closed captioning to screens on handheld devices, among other changes that would bring newer technologies up to speed with the needs of the deaf and blind.
The warning — from Edward J. Markey, D-Mass., chairman of the Subcommittee on Telecommunications and the Internet — accompanied draft legislation that would overhaul decade-old laws that first required communications access for the disabled in an era of analog television and wireline phones.
The draft would address a host of digital hurdles for the disabled. Among many things, it would scrap a rule requiring closed captioning only for television screens 13 inches and bigger in an effort to bring captions to iPods, Blackberries and other personal mobile devices that play video.
It would require video producers to apply closed captioning to content distributed on the Internet, require electronics manufacturers to put a closed captioning button on TV remote controls and reinstate a law overturned in 2002 that required broadcasters and cable companies to make some programming audible for the blind.
The proposed requirements are sparking resistance from the communications industry that Markey called “eerily similar” to opposition he faced when battling to enact the original closed captioning law in 1990.
“We were told that mandating closed captioning would add $20 to the price of a TV set and that it was overly burdensome,” Markey said. In the end, he said, closed captioning cost about a dollar per set and became indispensable not only to the deaf and hearing-impaired, but to immigrant families learning English and to sports watchers in bars across the country.
Markey singled out the wireless lobby in particular on Thursday, asking carriers and device manufacturers to help him set a deadline under which to work out a slew of new standards governing communications access for the disabled. “We can set what the deadline would be, legislate that, then we can work out the standards. . . . It’s amazing how much people can get done under a deadline,” Markey said.
Since Congress took up the issue of disabled access in the 1990s, many new services have empowered the deaf and blind — such as text messaging, new audio functions on mobile phones, and instant messaging over the Internet. But as technology has advanced across the board, the disabled have continued to lose ground in a number of other ways, argue Markey and the proponents of his bill.
Subscribe to:
Posts (Atom)