Today marks 2 years since Eve received her cochlear implant. Eve has profound hearing loss in one ear and moderate hearing loss in the other ear. What this means in practical terms is that she does not hear speech sounds and uses vibrations mainly to figure out that sound is happening around her. Eve is non-verbal and has a cognitive disability and it took a while to figure out that she was deaf after her adoption. We started with sign language and she is able to use modified signs to indicate her basic needs. Eve has poor fine motor control which limits her ability to progress her ASL skills, especially for others to recognize her signs. That is what prompted the discussion to pursue a cochlear implant and an augmentative communication device.
In the Deaf community, cochlear implants are controversial. I understand the pros and cons and the conversation that is happening on both sides of the issue. As Eve’s mom, I didn’t want to pick a side, unless it was choosing Eve’s side. Whatever would give her communication and a way to express herself, that was what I would pick. In October 2014, we made the hard decision to pursue a cochlear implant.
The surgery site healed for 4 weeks and then it was time to activate the cochlear implant using a processor. I am sure you have seen many activation videos where a person hears for the first time. Eve’s was similar to the “success stories”, we witnessed a moment when she heard something clearly. I cried, I will admit that. (You can access the video from my post last year, if you would like)
None of the sounds made sense to her because her brain could not tell her from experience what the sounds meant. What the videos don’t show you is what follows the activation. Weeks and months and years of therapy and exhausting listening practice. And with Eve it was a battle just to keep the processor on.
Thankfully we had a team that understood that our cochlear implant journey would be unique. Eve’s brain would learn sounds at her own pace and we would use unique strategies to get there. Eve had to be willing and motivated to use her listening skills in order for progress to happen.
2 years later, are we where I thought we would be? No. Not because I was unreasonable in my expectations. Mostly because Eve has had worsening of her seizures and during those times her processor is off. Migraine type headaches and sensory overload just don’t work together. But in other ways I am sure that we made the right decision. She knows all our names, she knows many daily words and she now has access to a communication device that she listens and makes choices with. Her frustration levels are down and we continue to see improvement all the time.
Finding quality literature about cochlear implants in children with developmental disabilities is a challenge. Not all CI teams are open to implanting children like Eve but I would encourage parents to find the right team that supports their decision. Not just for the surgery but for the long road following it. The decision is personal as are all quality of life decisions.