Mother of a Son (Part 2)
My husband and I continue to try and grasp ASL on our own since the class ended and let me tell you, it is very HARD to learn a 2nd language when you're pushing 40. ASL is signed differently than speaking so we were mainly doing pigeon ASL, signing the same way we spoke. We were also gaining information on CI's. At this time, from some of the information that I had received I thought, well, if he wants to play sports maybe it will be better for him not to get a CI. I mean he might want (sports) more than hearing. I searched and went to the residential deaf school (again 2 1/2 hours a way) and then went to the oral/deaf school (an hour and 10 mins. away). I observed the classrooms, curriculum and started asking questions. It appears that I had been misinformed, at least in my thinking. Kids with CI's do play sports and do everything that a hearing child does. I listened to some of the CI kids talking and was blown away. They answered questions from the teacher as well as me. I had some nice little discussions with some pre-school on up CI users and they didn't sound deaf at all.
I didn't stop there, no not me. I met with some high school kids who either had CI's or hearing aids and spoke with them. I asked questions, asked about their lives in the mainstream, got down and really questioned a boy that had decided to go to the residential deaf school that year who wore hearing aids and why he chose to do that. (He did admit that it was more of an attitude problem on his part to go rather than not being able to learn at his mainstreamed school.) Again, there were good hearing aid/CI users and some CI users that did not speak well. I saw both sides. But the thing that came out even though a couple were not good CI speakers was that they could hear and they did not want to go without their CI's. They were all glad that their parents had decided on the implant for them.
During this time I was also meeting with a CI surgeon. We had the CT scan done and everything was there and seemed to be in place so the cause of my son's deafness was not known. The CI surgeon still wanted to go through a lot more evaluations with my son and the hearing aids. I left that appointment pretty upset, not because of the hearing aids, but because I felt like my son was a number, a file, and I didn't feel as if the surgeon "heard" me as a mother. It was apparent from reading my son's audiology reports where he was and what his access level would be to spoken language, and more evaluations were costly. I went to another surgeon who did CI's, not world renowned for CI's like the first one.
The second surgeon I saw took time to answer all questions. We talked about everything, the CI, his experiences, how many he had done, sports, language, what made him become a CI surgeon, etc. I told the doctor if my son doesn't talk well with the CI then so be it, but if he can "hear" me say "I love you" then all would be well. This surgeon tells me and I quote, "I am just the person who puts in the equipment, it is the man upstairs and the parents who determine the outcome." He tells me that he will not put in a CI if the parents are not willing to put forth the effort. He has removed a CI from a child whose parents did not put forth effort, did not require that the child wear it in waking hours and were physically abusive to said child. He will not put a CI in a child unless the parents and child meet his specific moral criteria. He will not put a CI in an infant, and will not do bi-laterals on a child younger than 18 mos. He is not out for "blood money".
During this time I also had a Sorenson video phone installed. The woman who installed it scorned me in writing as I only knew baby signs. This woman told me that if my son got an implant he would not be able to swim, get on a plane, would have a hole in his head, it would cause brain damage, he wouldn't be able to play sports. I was shocked! I had heard something entirely different. Again, I was confused and didn't know which avenue to pursue. I didn't want my son to give up all that just to hear. But then again, most people don't play professional sports, they only play during the school years and they certainly don't play when they're in their 70's.
I then got my "light on" moment. It was close to Christmas and my brothers came to visit with their children. They were two little boys the same age as my son, one nine days younger than my son and the other 3 mos. younger than my son. We went out to eat and all three boys were lined up at the table in their high chairs. My nephews were playing a game. One would say something and the other would repeat and they would laugh and do it over and over. My son, was oblivious to the game. He was left out, had no clue, unaware, voided. Talk about taking your breath away. I never felt such a pit in my stomach. When we went home my husband had noticed it too. We were hurt, shocked, and devastated. We knew what deaf was, the doctors and audiologists told us, but that day we learned what "deaf" was in our family. This brought on a whole slew of new emotions and feelings.
Both my husband's and my family had good intentions of learning ASL, but as of yet it hadn't happened. We were struggling with it (except for my 5 year old daughter who seemed to be picking it up in lightning speed), and we knew deep down that all of the uncles, aunts, cousins and grandparents were not going to be on this ship with us. We were alone as a family. The excitement of "how do you say "thank you"? and other signs from family members had worn off.
In my mind, as a mother, I can't help but try to forsee the future. I see family gatherings at Christmas, Easter, regular old it's summer cook-outs. My son is 7 and I'm spending the whole time interpreting what everyone is saying. He's missing some of the conversation because I am slow and stutter in sign. I also can't keep up with what everyone is saying so pick pieces of everyone's conversation out. A few family members sign a word or two to him. My son is 16. He likes girls and cars and movies and video games. His cousins do too. His cousins sit and talk about girls and things that they don't want their parents to hear, my son is unable to do that, he sits by himself and hates these family functions. He doesn't want his mommy to interpret, he wants to go home, back to the residential school. We don't understand him, in his mind, and to be truthfully honest we probably don't. He's 21, where is he? he calls on the Sorenson once in while, we have a hard time expressing feelings. I love him, I want a good relationship with him, but I can't get there, we're world's apart.