jillio
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Okay, I'll go along......... I grew up a CODA... in a time where there was no ADA, SSI, etc. I was my parents ears (for lack of a better phrase)and advocate. We did not have a phone in our home until I was 10 years old. My parents never saw the need. I would just walk up to town (3 blocks away) and use a public pay phone to make phone calls. I saw the injustice firsthand and experienced it. My mother (not my dad) threw it around that since she was Deaf, we were put on this earth to help her, nothing more. To her, that was the role of a hearing child. She was bitter and resentful of the hearing community and took jabs at me and my siblings every chance she got. My dad, on the other hand, complete opposite. He accepted who he was and worked very hard to provide a life for us. He owns two homes and has never asked for anything . As I became older, I became resentful of my mother's attitude towards me and life in general. I rebelled and told her that she was quite capable of doing things for herself- she didn't need me as her crutch. I remember the fighting when I resisted to do something- after all, my dad was capable, why wasn't she??? I wanted her to be as independent as much as she could, and she didn't want to. She clung to various family members to take care of her needs, and eventually they got tired and overwhelmed, and would push her aside. It took years of therapy to understand her and I do, but it doesn't change what has happened. I only share this with you so you understand that going forward, I was going to do everything I possibly could to make sure that if I ever had a deaf child, he/she would be independent. I became a job coach and an interpeter in the field, and I saw many, many heartbreaking situations in which Deaf children were left to fend for themselves, of being virtual strangers in their own homes. I remember making the committment at the time, "If I ever had a child who was deaf, I would defnitely send he/she to a bibi program". I remember the stories from my mom about how her hands would be tied up so she couldn't sign... and how my Dad didn't even know ASL until he was 22 years old.
Fast forward, I had a beautifual daughter... She was hearing... Then I had a set of twins, and I quickly suspected that something was wrong with one of them. I asked my MIL (there is deafness on my DH's side also) how did she know that she had a deaf child??? I remember her telling me that I was paranoid, the twins were premature, and I was over thinking the situation. But I knew in my heart that my son was deaf. I pulled strings and got him tested and sure enough at exactly 1 month old, my son was diagnosed as profoundly deaf. I was stunned. I always knew it could be a possiblity, but never really expected it. Until I met my DH, I never saw deafness go back to generations. I only knew of families that mother /father were Deaf and that was it. Never any children, or extended family. It was all new to me. I was devesated. I knew perfectly well what deafness would do to my child... I knew of the limiations and prejudice at work. I knew of people getting frustrated with a tty operator call and hanging up. I knew that REALISTICLY if my son wanted to be the President of a major wall street banking firm- it would most likely be out of the question. Not because he couldn't do it, but because of the barriers that other people have put up. I mourned for days. It was as if a part of me had died. I remember vividly that the last thing the audie said to me was that he was the perfect candidate for a ci. I immediately told her no thank you, we would not be interested and I knew which avenue to persue.
After my initial shock, I picked myself up and started the process of getting him enrolled in a program. I contacted EI and was told to look at ALL the programs in my area not just the one that I was familiar with. I told the social worker that it was pointless because I had already made up my mind as how my child was going to raised. She said she wouldn't be doing her job correctly if I didn't investigate every single avenue- so I went. And I remember vividly that day... I was in an oral only program with a pit in my stomach. I didn't even want to be there- it was against everything that I truly believed in (at the time). I walked into the classroom and really expected to see children struggling and sitting in hours and hours of speech. All the horror stories that my parents had told me growing up came flooding back to me. But then, I heard these children speak. It wasn't even about them speaking , as so much as it was that they were actually LISTENING and hearing what was being said. I couldn't believe my eyes. I was really stunned, to say the least. It was all new to me. There was no frustration on the children's parts and they were easily talking to each other and answering the teacher in appropriate ways. It truly was unbelievalbe. Right there and then, I had changed my mind. This was the route that we would choose for our child. This assistive device could actually bridge the gap from both worlds and the walls of isolation weren't that paramount any longer. We made this decision not because we didn't accpet our son- but because we wanted him to have a choice. Because if he , later on down the road , doesn't want the CI, he could always turn it off. If we waited, it's too late. My niece who eventually got implanted at the age of 9 1/2 says her biggest regret is that she was not implanted sooner. So I felt that by giving my son the CI, I gave him a choice later in life.
Because of my desicion, it became very ugly around our house- meaning extended family. Everyone had their 2 cents..and then it became worse with strangers. People I didn't even know would say the most nasitiest things to me- calling me a traitor, not accepting of a deaf child, and the worst of it all... my very own mother telling me that I am a lousy mother for deciding to implant my child.
As I have said in earlier posts, my son's deafness does not define him . It's just a part of who he is. I refuse to put him in speech for hours. That's not what it's all about. He is a child and I want him to grow up just like his brothers and sister. No hours upon hours of learning to speak- if he did great , if not so be it. Just because he is able to speak as well as a hearing child- that is just a bonus, but it was never expected. I would rather my child be out playing football (which he does) , baseball, basketball, and developing relationships with people than being stuck in therapy. I have offered deaf school to him in our many conversations and he is adamant about it- the answer is always no. I truly believe that we have given him the best of both worlds and because of this, he is extremely well adjusted child. He knows that he is deaf and is proud of who he is. I couldn't ask for anything more than that.
Thank you for sharing your story with us, doubletree. You truly have a unique perspective of a CODA and a hearing parent of a deaf child at the same time. It found it very interesting that your feelings regarding your son's diagnosis were parallel to my own...yours because you did know what he faced, and I because I didn't know. It goes to show that there is a common thread in all of this somewhere, and that is what we need to find and focus on, rather than the differences.
I also, believe it or not, understand the family and friends opposition to choices that you make for your child. I was confronted with the same when I chose to include ASL in my son's life, and in my life. Eventually, as my son began to show the advantages of having both sign and speech, my family came around, and even made the effort to learn sign themselves. Today, my son is blessed with a family of origin that does sign. His grandparents and only uncle are both deceased, but my nephews and their children are fluent signers. It wasn't always that way, however, and I fully understand the pain and frustration of having to stand alone against the crowd to do what you know in your heart is the right thing to do for your child.
The battles I fought for him within the school system, and the problems I also saw in the deaf children growing up in the way you described also led me to a career in the field. I knew that my son had what he needed, but I saw many deaf kids that didn't, and it motivated me to try to do something to change that situation, one child at a time, just as you were motivated to do what you could for others. Shel, as well, because of her personal experiences as a deaf person, operates from the same motivational base. She is a deaf person, I am a hearing person with a deaf son, and you are both a CODA and a hearing parent with a deaf child. Yet we all three operate from the same motivational base. That is another common thread.
These are the kinds of things I was hoping for when I started this thread...that we find the sameness and stop focusing on the difference. Thank you again for sharing with us. Despite knowing your story from an impersonal perspective from the documentary, I was not priviledged to hear it from such a personal perspective until today. The personal perspective is what made the sameness clear.