This post has been a long time coming, and I want to preface it by saying that I KNOW that I owe no one an explanation for the choices Brandon and I make as parents.
But in choosing to share this journey, I feel I’ve committed to explaining the process, even the more controversial parts. And unfortunately, cochlear implants are a controversial topic in the deaf community. So, knowing that, this is my attempt at explaining our decision-making process and our “why” behind choosing CIs for Cooper.
As a parent, you expect your child will be different from you — but you expect this in the small ways. Maybe their food preferences, or their favorite color, or their sense of humor.
What you don’t expect is for them to be different in the really freaking big ways, like in their ability to hear — or not hear, in our case. But here’s a pretty staggering statistic: 90 percent of deaf children are born to hearing parents. That’s pretty wild when you think about it.
Even so, when you’re a hearing parent with a hearing spouse, the chance of having a deaf child really isn’t even on your radar.
So when that diagnosis comes, your world is flipped on its axis. The idea that your child literally lacks the ability to communicate the same way you do is terrifying. There’s this little human life you’re responsible for, and, as it stands, you have no way to communicate long-term.
After a diagnosis of profound deafness, you’re faced with a few decisions as a hearing parent:
- Learn sign language and choose that as the primary way of communication with your child
- Determine if your child is a cochlear implant candidate and if they are, go that route with spoken language as the goal
- Choose cochlear implants but still incorporate ASL
(There are probably some other choices thrown in here for some people, but these three were how we looked at it)
If you haven’t gathered yet, we have chosen the third option. Cooper is a CI candidate and will likely receive them next summer. But we are also choosing to bring ASL into his world so he has access to that if he decides it better suits him.
Sidenote: I want to stress one thing here. The medical professionals we have worked with were very good about presenting different options. We at no point felt pressured to choose CIs, or felt as if they were being presented as the “right” choice. We were provided educational materials about all options, and did our own additional research to make an informed decision.
Here’s where the controversy comes in for some people (and this is just from my understanding in the short time we’ve been immersed in this): some in the deaf community view CIs as an attempt to fix deafness, or as a way of trying to separate oneself from the deaf community. Can I see their side of that? Absolutely. And I am doing my best to educate myself and learn how to speak about this topic respectfully and correctly.
But here’s the thing — as hearing parents, CIs and spoken language make the most sense for our family. We know they aren’t a “fix” for his hearing. We also know his being deaf isn’t something that needs a solution or a treatment plan. He isn’t broken. We aren’t ashamed of it. Cooper will still be deaf, even with CIs. We know that, and we plan to teach him to embrace that part of his identity. But knowing we can give him the ability to communicate with speech, we are choosing to do so.
Another argument I’ve heard is that parents should not make the decision about CIs for their child. Rather, they should leave it up to them later in life. But as parents, we make decisions for our children every single day. This happens to be a bigger decision, yes. But for children born profoundly deaf, there is a higher success rate associated with getting implanted in the first year and a half of life. Waiting until they are old enough to make the decision themselves runs the risk of the implants not being as beneficial as they could be.
“Children who receive cochlear implants before 18 months of age are better able to hear, comprehend sound and music, and speak than are their counterparts who receive the implants at a later age.”
So there you go. Those are our main reasons for making the choices we have so far. We in no way believe this is the “right” decision overall, but it’s the right one for us.
If I’m being honest, being open about this decision and this journey has been harder than speaking about my sobriety,. I think this is mainly because it involves my child and husband, not just myself. By sharing, I am opening them up to judgement and negativity, and I hate that. But I also think it’s so important to speak on this topic and to educate those with little to no knowledge of hearing loss. Opening up that dialogue is the only way that this diagnosis will gradually become less scary for parents like us, and I want that for them, so I plan to keep doing my part.