Shortly after my daughter received a cochlear implant (CI), I felt a need to reach out to others in the Deaf/CI community. I was new to the small town where we had recently moved, new to being a stay-at-home mom, and certainly new to being a mom to a toddler who needed help learning to use her CI. I was also dealing with insecurities about taking Sara out into the “mainstream” world. This was in the early stages of dealing with her deafness and the very visible technology she was using. I wasn’t really sure how to talk to people about it or answer the questions I was sure would come up in public.
Through our local and outreach support and service organizations, I met a few parents of other cochlear-implanted children who had a lot of experience to draw upon and share. These empathetic parents gave me some very helpful advice, offered an ear when I needed to vent, a shoulder to cry on when I was feeling down, and helped steer me in an unbiased way toward other support services and resources. These first positive experiences made me realize how valuable good mentors and friendships are to me, and how important a sense of belonging is for our family. I decided to try and connect with others through the internet.
On the internet, I found a few interesting websites and support groups and joined up! I was hoping to be welcomed with open, loving arms into a close-knit, helpful and vibrant community FULL of happy people.
What an innocent! I blogged about everything I was going through, and really wore my heart on my sleeve. I talked about depression, anger, feeling alone, and wondered if what I was doing was working with my child. I asked question after question. Then I started talking about SIGN LANGUAGE. I got shot. I got wounded. I was stunned.
I hadn’t realized that one of the support circles I had joined promoted Auditory Verbal Therapy. At this early stage, I didn’t fully understand how it differed from Total Communication, nor did I realize that some people are very passionate about and will defend their chosen therapy method with great conviction. I responded to a question about toilet training by explaining how teaching my daughter, Sara, basic baby sign language at eight months of age had proved to be very effective for cutting down both of our frustration levels and for teaching about toileting. I said that during the initial stages before and after cochlear-implantation surgery, the brain and the auditory nerve are receiving a lot of input but not much output yet, and, therefore, the child needs a way to communicate his/her needs when he/she is not yet able to fully speak.
To say that expressing my opinions opened a can of worms is an understatement! I was told that if I used Total Communication, I would be sending Sara straight down the road to Gallaudet University for the Deaf, implying that sign language would crowd out speech development and she would never learn to talk. Someone decided to preach to me that AVT is the only proper education for deaf children. To add insult to injury, a deaf person who doesn’t wear or support cochlear implants expressed an opinion that to perform unnecessary surgery on a perfectly healthy child is abusive. I was then promptly ‘unfriended’ on Facebook!
Now I was completely disillusioned. Deaf vs CI; TC vs AVT. Where is the love? Is this really a tight-knit community/culture at all? What have I walked into? Naturally, I became defensive and started rambling on about Total Communication online, not really knowing if it was working for Sara at the time, yet feeling this need to defend my choice. Next, I took a step back and furthered my research into the various therapy methods, the history of the CI and how it has affected the Deaf Culture, why sign language seems to be ‘off limits’ in many hearing people’s minds, and why this “community” seems to be so splintered.
Could it be fear? Fear of a once small yet close culture dying off due to the invention of the cochlear implant? Fear of cochlear-implanted children not learning to speak intelligibly and keep pace with their hearing peers if given sign language instruction? Fear of not being a fully-functioning or accepted person in the ‘mainstream’ world? I could find no evidence in the real world or any articles stating that children unequivocally have better results with one method of therapy over another. I firmly believe that each child and family’s needs are different.
I learned a very hard lesson very quickly through this experience. I learned that, for me, as a parent, I need to take my ego out of the equation when determining the best course for my child and to find the method that will work best for MY CHILD. I also learned that it is not helpful to become self-righteous and proclaim to others that your method is the only way. Furthermore, it’s not only okay but necessary to change direction at any given time if that is what is required for your child’s wellbeing and progress.
The biggest lesson from all this that I carry with me today is: I have learned to be grateful. I am grateful for all of the people and opinions within our community. Even the ‘difficult’ people I meet now serve to remind me of what sort of community mentor I would like to be for others.
I think that what our Deaf/CI community/culture needs in order to thrive is for its peoples to be open-minded and supportive, especially to those just beginning their journeys, and to embrace the future and what it holds for technology, new therapy methods, and ideas. Today, I believe that the objective of this amazing journey is to facilitate the capacity of a child to communicate effectively; to pass along the ability to understand and be understood; to enable a child to express her/his innermost thoughts, feelings, and dreams.
This is also a journey of awareness. Most of us with so called “normal” hearing learned to hear and speak at a young age and took it for granted from then on. Without a deaf or hard of hearing loved one in our lives, many of us would never have had the opportunity to fully understand and realize the enormous importance of communication in becoming a whole; mentally and emotionally secure; and fully functioning member of our society.
I feel very strongly that a human being not only needs, but deserves the ability and right to communicate effectively within their family, their community, and the world at large. As parents and citizens of the world we have a responsibility to do the very best we can to ensure that our children are given the tools to carry this out. They are not just our children and gifts to us: they are our children and gifts to the world!
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