Back in late 1998, my baby girl came down with meningitis. It was a scary, stressful time for our whole family. We knew before she left the hospital that the disease had claimed her hearing. We also knew we wanted to look into a new option for partial restoration of hearing - the cochlear implant. It was a mad scramble time for us. She still had many health issues, and we had many medical appointments as well as beginning to climb the HUGE learning curve that is deafness.
By early spring in 1999, we had chosen to go the SEE sign total communication path, along with getting the cochlear implant. But back then, there were not a lot of children in our area who had one, so we only had adults to talk to. And there weren't many of them either. Along came a 60 Minutes episode featuring a 14 year old girl named Caitlin Parton. This was actually a follow-up on an episode originally done when she was six years old. The program showed some of that initial episode, along with her current life at 14. She was the first child with an implant that I had actually heard speaking and interacting with people verbally. This was the first real hope I had that this scary path we had decided upon would actually give our daughter usable hearing. If our daughter could get half of what Caitlin had, we would be thrilled. I cried through most of the program.
Our daughter took to the implant like a duck takes to water. She had hearing aids, which she hated, but by the time we got home from her first appointment to activate the implant, she wanted it on. She stunned even the doctors with how quickly she progressed, and how well she did with her implant. She now has bilateral implants, and is in middle school. She is almost as old as Caitlin was when that 60 minutes episode was aired. And she is doing just as well.
Caitlin is an adult now, and has recently had her story told here:
http://www.newstimes.com/default/article/Woog-s-World-The-Parton-family-speaks-up-494864.php
I just want to take this opportunity to thank Caitlin and her family for their willingness to tell their story publicly. I know they faced a great deal of criticism from the Deaf Community because of their decision to give her an implant. But they also gave hope to a lot of families like ours, when we really needed it. One reason I blog is in honor of them and others who came before me to help pave the way. Paying it forward and giving hope to families who follow me is the way I can say thanks to them for their bravery and willingness to go public with their stories.
Thanks Caitlin (and parents).
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13 comments:
It's important to pay it forward. :)
I didn't realize Cochlear implants were so young in the late 90s.
I'm glad she's doing well.
- OH (having trouble signing in)
I am also a mom of a Deaf daughter. I enjoyed
your story. There was one sentence that did
botherfme and that is when you mentioned
that Catlin's parents felt the Deaf Community was
negative to them about their decision.
In support of the Deaf Community, I must
protest a bit to that comment. The Deaf Communiry
is wide and diverse,made up of many people
with different opinions. This is not any different than
the Black Community, the Jewish Community,
or even the Republican or Democrat Community.
There are many Deaf people in the Deaf Community...and opinions vary. There are many Deaf people and
children with cochlear implants as well.
What I have learned over the years is to try not
to generalize about the Deaf Community. My daughter was
raised bilingually...ASL:English. Many of her friends
come from other families who raised them differently, however,they are all part of her Deaf Community.
Our children may be from our family to begin their
journeys but eventually they will want a Deaf Community made up of Deaf and Hearing people who sign, speak, use
hearing aids, CIs, whatever.
Please keep the Deaf Communities in your Deaf
childten's lives.
( I use big D for ALL the Wonderful individuals
who happen to deaf or hh. To me it is a word to
be proud of.....Deaf)
My daughter was implanted in 1989, and the Partons were one of the first families I met, and I looked to them over the years many times. While I recognize that the deaf community is diverse, I can attest to the negativity and hostility that we received during those early years. At one point, Caitlin's mother and I collaborated on an article entitled "Countering Misinformation About CIs in the Media." Some of the quotes from that article illustrate what it was like for us during that time, "Like the Nazis, they seem to enjoy experimenting on little children," "I see cochlear implants as equal to sex change operations," "Having a wire coming out of your neck can make you look like an extra from a bad 'Star Trek' episode,"... rob that child of a birthright of silence." Members of the deaf community said our children would hate us by the time they turned 18 and that they would be suicidal. While it may not have been all in the deaf community expressing such hostility and nastiness, those who did were persistent and loud and were the ones who got the press, while the rest remained silent. While many in the deaf community have come around in their views of CIs, there are still, unfortunately, too many continuing to spread misinformation with hostility. My daughters, now ages 23 and 15, want nothing to do with the deaf community because of this hostility. They may have a few friends with CIs but, like them, these friends live their lives fully in the hearing world.
I would like to echo the second anonymous person's caution in making generalizations about the deaf community and Deaf culture.
Let's assume that the deaf community in the U.S. may comprise 10 million people who are deaf without the aid of the hearing devices. (The number of people in the U.S. with any degree of hearing loss is very often stated to be around 30 million. I estimate that one-third of them are deaf and the rest are hard-of-hearing.) Only very small subset of the deaf community is said to be part of Deaf culture. The number of members of the culture could be as high as one million or as low as 500,000. Based on my completely unscientific observation, I could say that less than 10% of the members of Deaf culture are vehemently against cochlear implant. (Many more members do not like, favor or prefer cochlear implant but unlike them, they do not oppose others' choice to use cochlear implant.) Assuming that the deaf community comprise 10 million people, assuming that there are one million members in the Deaf culture, and assuming that 10% of the Deaf culture are against cochlear implant, this means that there are 100,000 people in the whole deaf community, or 1% of the whole deaf community, who are vehemently against cochlear implant. We cannot let 99% of the deaf community be overshadowed by merely 1%. We cannot generalize the position of 1% to the entire deaf community.
I made mistakes in making generalizations in the past. I do not intend to berate K.L. and others but hope to put the opponents against cochlear implant in right perspective.
(The numbers that I used above are all guestimates. I have not seen any accurate statistics on the number of people who are part of the deaf community and the number of people who are members of the Deaf culture.)
Joseph Pietro Riolo
josephpietrojeungriolo@gmail.com
Public domain notice: I put all of my expressions in this post in the public domain.
Nice story!
To see there's another child from that era that did so well is awesome.
I took interest in this: ""Caitlin is a very confident young woman," her mother continues. "She functions in the signing world, and has many deaf friends with cochlear implants. They sign, they talk -- they've accomplished great things."
So, what made Caitlin take up ASL? Does anyone know? I think it is awesome that one can be implanted and later on take on ASL and have the best of everything.
Candy,
I think Caitlin learned ASL in college. It might have been high school. She was fully mainstreamed throughout school and college but did have friends who signed. Her auditory and verbal skills were very well established by the time she learned sign, though.
Joseph,
Your point is well taken. Unfortunately, as is the case at times, a few can ruin things for everyone else. In this case, because the only ones speaking up were the ones who were critical, that is what those of us who were among the early CI parents were up against. At the time, NAD was fighting to rescind FDA approval of implants in children, and Harlan Lane was out there speaking up vociferously against CIs in children. In fact, when friend of mine went to one of his talks where he claimed CIs didn't work, he walked up to him afterwards with his daughter who has a CI and asked him to speak with her. Lane refused. Most of those not involved with the naysayers didn't and don't speak up, and so all anyone hears is the negative. I would love for more sane voices to speak up against the militants today and let them know that their actions are unacceptable.
To Joseph and Anon 2. I am very happy that things are better today, but when I mentioned the difficulty Caitlin's family had with the Deaf Community, it was in the context of that time. At that time, the only interactions they had with the Deaf Community were negative. Nobody from the Deaf Community came out in support of them. From that perspective, yes, they did have a very negative reaction from the Deaf Community as a whole.
Things are much better now, and I really hope that they continue to get better as time goes on. There are still some very negative individuals, but on the whole, I really think new families can expect to get much more support when they choose to have their children implanted. That is a very good thing.
To K.L.: Thanks for correcting me. I remember that time very well because...well...I hate to say this but...I used to be very vehement against cochlear implant not just for kids but also for all people. The emotions at that time were very intense and raw.
To MKChaikof: Your points are all correct. It sometimes annoyed me that the moderate or reasonable voices did not get same attention or spotlight that the people with extreme positions (on both sides) easily got. It is probably due to the yin-yang force. :-)
Joseph Pietro Riolo
josephpietrojeungriolo@gmail.com
Public domain notice: I put all of my expressions in this post in the public domain.
Most of the Deaf community members probably don't believe in CI but may respect our decisions. Today over 90 percent of deaf children at several deaf schools with ASL as the main language in my area have deaf parents and almost none of them have CI. That shows that the majority of the Deaf community doesn't believe in CI although the community is widely diverse!
I think they used to be hostile about CI years ago but now they seem to accept it as one of options for other parents but still don't believe in it themselves.
Anonymous - Since 90% of deaf children are born to hearing parents, one of the issues with segregating deaf children in deaf schools with ASL only is that life for them as adults will be lonelier with fewer opportunities because the number of deaf adults 20 years from now who sign and who do not hear and speak will be greatly diminished because of the CI. I know of two children born to deaf parents who have received CIs and whose parents have opted to have their children learn to hear and speak in addition to communicating with them at home using ASL. These parents did not make this decision lightly, and it took courage on their parts to face the criticism of members of their community. However, they have acted in the best interest of their children, giving their children increased choices for their future. It's too bad some of the other parents in your area whom you mentioned can't be more open minded and educated about CIs as well for the sake of their children.
It still amazes me how fast this technology took hold and how much it has improved in just a couple decades. I knew adults in the 1990s who were among the first to get a cochlear implant. Back then, implants weren't nearly as effective as they are now.
Making the decision to have your child implanted at that time must have been difficult, but it turned out great!! I expect it is still a tough decision for parents now, but at least they have the benefit of seeing kids like your daughter and Caitlin.
My son was implanted in 1998. Caitlin's experience helped us decide to go ahead with this important decision. On the other side, we did examine the arguments of the Deaf community and people such as Harlan Lane and found them wanting.
At nearly 14, Eric is in a mainstream school and doing well academically. The cochlear implant is a perfectly normal part of his life. Thankfully, we were not persuaded by the likes of Harlan Lane, who, as some may recall, used to make argue that "not a single child had learned to speak via a CI." How wrong that MacArthur "genius" turned out to be!
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