The news is that we, as a family, have decided to get Weston cochlear implants. And it's happening this Wednesday (April 10th).
We haven't talked about it a lot because it usually generates a long and sometimes exhausting conversation. We absolutely welcome questions and we really want everyone who has a relationship with Weston to understand what it means for him. We're going to address the most common questions and responses here one by one but feel free to reach out if you have more questions.
Reaction: "Wow that's so exciting! Good for him! That'll be so life changing. [Other excited reactions!]."
Response: What we want to say (mostly teasing): Your hearing bias is showing. :)
What we usually say: We are really excited but not for the reasons you may think. Weston is a very happy and capable kid. We are confident he can do anything he puts his mind to (as he has proven in many ways) regardless of any sort of hearing technology. What this is, is essentially an equivalent of him entering a dual language immersion program. Hearing (and speaking English, IF he is able) will simply be another skill that will enhance his life, that's why we are excited. Our excitement is not focused on him talking, hearing music, or other hearing specific perceived life benefit (see below).
Reaction: "This will improve his life so much! He will be able to navigate his surroundings and relationships with hearing people with ease!"
Response: What we want to say (mostly teasing): Again, your hearing bias is showing.
What we try to explain: As hearing people (us included) we cannot fathom a life of silence as a blessing, a positive, or a gift. We have spoken with many parents who have had to mourn the fact that their child is deaf. This is absolutely natural! We of course have a hearing bias because we are hearing! And most of the people we know are also hearing. However, spending time with Weston, exploring, and talking to him about his experiences has shown us that there is nothing lacking in a life of silence. Us hearing folk, often lament about music specifically. "Oh, how sad that he cannot experience that." Weston experiences music in his own unapologetic pure way with or without hearing devices. As he begins to experience sound, his relationship with music may change. However, we do not believe accessing sound will impact his quality of life. He is confident in a way we seldom see in 6 year olds. We credit that to an innate sense of who he is and a confidence in a life that is wonderful, even without and possibly because of the fact that it is silent. He may find more ease in communicating with the general public and hearing friends and family because of the implant but we don't think his quality of life will "improve" in the way our hearing bias would assume.
Question: "What made you change your mind?"
Answer: We didn't. Weston is proud of his deaf identity. In our many discussions leading up to this decision, he has actually stated that he really enjoys silence (haha!). But he also really wants to learn to speak to his cousins, friends, and strangers. It is important to understand that this has been 100% his choice. Since last summer he has engaged us in regular conversations about learning to speak and getting an implant. We put it off as a phase at first but he has been persistent.
It has actually always been the plan to allow him to gain a foundation in sign language and confidence in his deaf identity and then allow him to make his own decisions in regard to aids and technology. You can read more about that (as well as our general opinion of cochlear implant technology) in the blog we wrote way back in the day. We didn't expect it to happen so soon but we have spent a lot of time making sure he understands what he's asking for. We've spent a lot of time trying to understand his motivation. We feel confident he understands what he's getting into and he's doing it for the right reasons.
Question: "So does that mean Weston will be able to talk?"
Answer: Weston's primary language will likely always be ASL (so don't stop learning!). Cochlear implants have varying results. Some of the factors that can affect the results are: cause of hearing loss, extent of hearing loss, age, anatomy, mental capacity, dedication to post-operation therapy and probably a few other things. So the short answer is, no clue. Weston's age is working against him as the brain's auditory/language development years are coming to a conclusion. He was born with some hearing and has worn hearing aids since 6 months so that is an advantage (the brain has had exposure to sound of some sort). He's also a genius, so there's that. :)
If he is able to hear and identify speech, it will still take months and even years of weekly speech therapy to be able to process the sound, make sense of it, and replicate it. Even in the most "successful" cases, cochlear implants still only provide a distorted version of the sounds we hear (with little volume control or directionality). As such, it can be overwhelming or hard to focus, especially in large gatherings. Again, if you plan to be part of Weston's future, this is not an escape from learning ASL (hint hint).
Question: "What all does the surgery entail?"
Answer: We're no experts but we'll try to explain it as it's been explained to us. A cochlear implant is made up of two pieces. There's an internal device and an external processor. They make a 1 to 2 inch incision behind the ear and pull the skin back in either direction to access the ear cavity as well as the skull directly behind the ear. It'll be a 2-3 hours outpatient surgery with stitches and no pain medication prescription, just ibuprofen (or so we've been told).
The internal device has a small but powerful magnet that is embedded under the skin behind the ear. It has a long skinny silicone tail that wraps inside the cochlea, essentially bi-passing most of the inner ear. The electrodes on the device make a direct connection to the brain through the nerves in the cochlea. (pictured below is the internal device Weston will be receiving)
The external device is not activated until the surgery is healed (about 2 weeks). There are multiple kinds of processors but the most common one looks like a big hearing aid that hangs on the back of the ear (but without the molding that fits in your ear). The processor is where the actual technology is. It has microphones, a battery, and even bluetooth capabilities. The processor has a wire that can be attached and detached to the internal magnet, sending the sound directly to the brain.
Summary:
Our biggest fear and ultimate hesitation in moving forward with this has been a fear of changing him. He is a freakin cool kid! And not just because he's deaf. That's just one piece of his identity. He is confident, he dances instead of walks from Point A to Point B. He is brilliant and loves competition. But ultimately, he has expressed a desire, has communicated understanding and expressed eloquently what he wants and expects from an implant. As parents of such an amazing human we can only support the desire with all the passion we can. So here we go!
