Within the first 24 hours of Riley's life we found out she was deaf. Well, that's not 100% true. Riley failed her newborn hearing test twice and had to go to the ENT for more testing. If you have been following this blog, October 31, 2012 we found out for sure our baby couldn't hear. She was profoundly deaf in one ear and severe in the other.
There was a small window of time when I was in shock. I didn't understand how this happened. I didn't know what to do or where to even begin. Josh and I were in complete and utter sadness. Once that initial shock wore off, we got to work.
Cochlear implants were never even a "should we" discussion. We found out that our deaf daughter would have access to sound and could have the opportunity to develop spoken language; that was really all we needed to know. I don't think there was once where we wondered if we were making the right decision. We still don't have any regrets.
With Nyle DiMarco (Dancing with the Stars) coming into the picture and being a deaf celebrity with a huge advocacy for ASL, the war on deaf vs. hearing continues. I have seen so many articles on social media about the Deaf community and their view of cochlear implants. I don't judge any parents for not getting their children cochlear implants so why do they judge me? There hasn't been one time where I think of DiMarco and wonder why he never got CI's. I am amazed by his ability to sense sound through his body movements and appreciate the work he has put into making his life successful. However, we put in work too.
I something think learn ASL would have been easier than the therapy we do with Riley. We choose AVT ( Auditory Verbal Therapy) which concentrates on auditory (listening) and verbal (spoken language) to learn to listen and speak. Every morning I do a Ling check with her; if you're a parent of a hearing child you probably don't even know what that is. We talk, ALOT in our house. We wait. We wait for Riley to produce sound to tell me what she wants or need. She can't point, she can't wine, she must use her words at all times. She gets frustrated. Usually about one time a day we have a breakdown of communication and someone ends up in a tantrum; sometimes that person is me.
Riley is coming up on her 3 year hearing birthday and still behind. We continue to advocate for her with the school systems and community resources. Riley is deaf (period). Some of the deaf culture doesn't think of being deaf as a disability, but more as an identity. Below is the definition of disability.
Disability is the consequence of an impairment that may be physical, cognitive, intellectual, mental, sensory, developmental, or some combination of these that results in restrictions on an individual's ability to participate in what is considered "normal" in their everyday society.
Based on this definition, do you think deafness is a disability? Hearing loss is classified as the #1 birth defect in America. I don't want to cause any problems with the war on deaf vs. hearing, but being born deaf is considered a disability in American society. 1% of Americans can use ASL and ASL is the sixth spoken language in America. More people know Spanish and German than ASL. Currently Riley is stuck between a deaf community and a hearing couture. She doesn't hear like we hear. Listening doesn't come easy for her. When Riley doesn't have her CI's on, she can't hear anything. Nothing.
I don't really care what your language of choice is. I don't wonder what went through your mind on making decisions. We chose not to use sign language with Riley. If you ask me one month, the next month it's going to be the same. One day, Riley might want to learn sign language and I am fine with that. If she is up to her language goals and has a good grasp on spoken language, the world is her oyster. She can do anything she wants! That's what parents do.
My job is to make decisions for her now, as her parent. Parenting is not easy and sometime you have to make decisions that society doesn't always agree with. I felt (and still feel) like I wanted to do whatever I could to give her all the opportunity in the world. If she was born without sight, I would research any technology to make it easier on her. If she was born without limbs, I would research and get any medical enhancements I could to make her life easier. I'm a mom; that's what we do. You consider your values and beliefs (whether spiritual or religious) and make a sound decision that is best for YOUR family. I don't judge you for your decisions so don't judge me for mine.