Sunday, December 7, 2014

Cochlear Implants

When I tell people Weston is deaf the following conversation occurs;

"Cool, I had a high school friend (co-worker, neighbor, other random life acquaintance)  who is deaf. They had one of those implanty things. Are you going to get one for Weston?"

"Lengthy explanation about how we feel about cochlear implants including more information than said person was actually wanting."

I love when people ask questions about Weston's hearing. Though it's usually to their detriment since I have enough thoughts, experience, research, opinions, etc to occupy hours of their time. But since this is definitely the #1 most asked question I think it deserves a blog post of its own. Hopefully it will reach many eyes and help people understand us a little more.

When people talk about cochlear implants they usually ask if you are pro or con. As if you can't have any other opinion. I have found that people assume if you don't have one you must be against them and if you do have one you are pro implant and thus anti deaf culture. However, the more research I do the more I realize this is not the case. As I have met several different children from several different situations along with researching my face off I have learned that getting a cochlear implant has nothing to do with opinions about the device itself and everything to do with what's best for the person receiving it. So if you ever hear me talking about cochlear implants or about my opinions of them then know that it is based solely on MY experience with MY child.

That being said I will now insert the above alluded to explanation of cochlear implants.

Jesse and I have been researching cochlear implants since the day we found out Weston was a candidate. Let me just say they are amazing pieces of technology! They can do seriously awesome things. Some of the different brands we have looked into can do a variety of things including recent waterproof versions, blue tooth enabled versions, ones with removable magnets in case an emergency MRI needs to be performed, etc etc. They can do some seriously awesome things.

However, one myth that people often are led to believe is that they cure deafness. Which isn't quite accurate. Cochlear implants can do these amazing things because it is super advanced and awesome technology but it is still just that, technology. It is not miracle grow that helps regrow the lost and damaged nerve endings in the cochlea. It is actually a device that attempts to replace the lost function of the cochlea with its one silicone version. It does an amazing job at tricking the ear into hearing sound. However, it does not have a button to push to help the brain interpret this sound. Even though we hear sound it doesn't mean our minds can understand it. Just like you may hear a foreign language. Just because you hear it doesn't mean you are able to use it in any useful manner. People fail to realize that after a cochlear implant is turned on a person will still need several hours, weeks, years etc of intense speech/language therapy. Some people are able to use the device to develop speech and others aren't. Just because a person gets an implant doesn't guarantee that they will have success with it.

While fear of non-guaranteed success does weigh on our minds it is surely not our deciding factor but good information for people to understand. Our major concerns our these:

1. Weston is deaf, period.
Weston will always be deaf no matter what device we decide to put in his head. As parents we think it is vitally important for him to understand what that means. Being deaf is an identity. He was born into a culture, history, and legacy because he is deaf. Jesse and I want him to learn what that means and embrace it. I have terrible eye sight and thus need glasses or contacts to function at all in daily life (driving, reading, seeing 2 feet in front of me, etc). So, if I were to ever lose my glasses I would be lost. Applying this to Weston; he uses aids or could use cochlear implants to help his impairment. However, there will be situations in his life where these things might not be there to aid him. In these situations we don't want him to have to be lost. So we are trying to give him the tools of sign language, deaf culture, etc now so he can use them for all his life.

2. Making a huge decision on behalf of another
Jesse and I have greatly struggled in this particular area. Whether we implant or not we are making a decision that will forever impact our child. If we implant then we are electing to place a device in his head that will be there forever unless he elects to have surgery to remove it. We are choosing for him to speak and be in the middle ground between the hearing and deaf community. On the other hand, if we don't implant him we are potentially taking away his ability to speak and forcing him to be part of the deaf community. Either way we are shaping the direction of his life. Kind of a scary deal if you ask me. We feel more peace by not implanting because it is not as permanent. We don't feel comfortable electing on his behalf to have major surgery where a permanent device is implanted in his head. We feel that it is his body and because it is an elective surgery we will wait until he chooses to elect it for himself.

3. Following Weston's lead
I have spent time with several deaf children with/without implants who love sound. Parents have to ability to see what their children love. A parent who notices this love of music and sound in their deaf child may choose to implant because that's what their child wants and they recognize that. Jesse and I have seen a pattern in Weston since day one. I wish I had on camera the first time we took Weston into a room of deaf people. Everyone was signing and his face lit up. Even though he had never seen sign before you could see in his eyes that he knew exactly what these people were saying. He recognized his language. His enthusiasm for sign has only continued to grow. He signs so much most recently signing his ABC's and days of the week. He is a sponge for ASL. As his parents we feel confident that not implanting is whats right for him right now. We are pouring all our focus into the deaf culture, community, and language and Weston is eating it up.

After reading this you may say I am indeed anti cochlear implant but that is not the case. I just believe in the right timing. Will Weston ever get an implant? I don't know. But for now Jesse and I feel greatly at peace that Weston should wait. If he ever desires one then I will do everything in my power to get him one. Weston is developing quickly and is not behind in any developmental milestones. We feel confident he will continue to be successful and happy regardless of whether he is implanted or not.