In June of 2005 our son, E, was born. E's birth was the bright spot in a very difficult year. In the wake personal loss, regret, and tragedy, E's arrival brought us joy and peace.
We had just moved from New Orleans, only a few months before Hurricane Katrina devastated the city. Our move had been precipitated by my growing dissatisfaction with my teaching job, plus the folding of the little mission church into which we had invested nearly five years of our lives. Feeling that our life there was coming to a close, I had begun to look for another teaching job. I had interviewed at several schools, but nothing had come through. With one school still in the air, we set a date for our departure. We would place our belongings in storage, since we didn't really know where we would end up. We decided to move to Philly, since our family was there. The day before our move, the final school responded: I would have a job teaching English in Philly.
My first order of business on arriving in Philly was to make my very pregnant wife as comfortable as possible in my parents' house, and, second, to make contact with the folks at my new school and get set up with curriculum, etc. Third, I had to work out how to get our belongings moved up from NOLA. Well, things didn't happen in exactly that order. One week from moving in, someone noticed that Jeannette didn't look great. They suggested I take her to the hospital, which I did. And that was the day E was born. Four weeks early, though, thankfully very healthy, a good weight, and needing no special care. That is, except for the off-hand remark the nurse made about his being "referred" on his newborn hearing screen-- a detail that got buried with all the other details of checkout from the hospital.
A few weeks later, about a week before the start of the new school year and all aglow about my new son, tragedy struck. We heard that Katrina was bad and watched in horror as it headed straight for the city that still felt like home. The morning after the storm we called all of our friends to make sure they were OK. That evening, I saw my city on the news, drowning in its own filth. I sobbed uncontrollably for nearly two days.
I'll never forget that year. I'll never forget those few months. I suppose I could say that I'm still living it, in a sense. It's been just that hard to move on. The job didn't work out. We did get out of my folks' place. Financially, we're making it work. Barely. But what makes it all livable is my son, E.
Discovering E's deafness
Discovering E's deafness was not so much an event as a process. The realization trickled in, bit by bit. We knew something might be wrong, insofar as we knew that a "refer" was not a "pass". But we had no idea what that meant. Thankfully, a couple of weeks later, the hospital made a follow-up call to see if we had taken further steps in getting him tested. Our pediatrician didn't think there was a problem, but my wife thought E wasn't startling as he should, so we got a referral to an ENT.
Our visit to the ENT at a local children's hospital marked the start of months of confusion. The audiologist did a few tests, including an OAE and an ABR, which confirmed his hearing loss. But he did not give us a clear understanding of the extent of E's loss. The ENT advised us to wait until E was older and then come back for further testing. No mention was made of hearing aids or cochlear implants. Just a blank wait-and-see. It was hard to even understand whether or not he was deaf. We just had no idea. And not knowing was harder for us to deal with than the prospect that our son might be deaf.
While we waited for more definitive information, we went ahead and contacted our local Early Intervention agency. After some phone tag and some machinations over dates, a social worker arrived at our house. She made some basic observations of E, and asked us whether we had thought about communication options. We didn't even know whether he was deaf. So, no, we hadn't thought about it. "Do you want him to sign? Or do you want him to speak?" Tough-nut oldest children as we both are, we immediately responded, "Why can't he do both?" This woman was clearly pushing the auditory / verbal approach, but that didn't seem to make sense to us. We reasoned, if a tool is available, he should have it.
That was the first time we heard the term, 'total communication'. The 'total' part sounded good to me, since my personality is to do everything to the extreme. We also liked "bilingual." We both have scholarly backgrounds, and have a handful of languages between us. We're the type who would try to teach our child French and German, along with English. So, yea, we said we wanted him to be bilingual. We had no idea what a fateful decision we had just made. We made it in almost total ignorance, and on intuition. We haven't for one single moment regretted it, and even now we marvel at the providence that brought us our next significant encounter, with S.
S came to our home regularly from Pennsylvania School for the Deaf. Slowly, she began to open up to us a whole new word of deafness, giving us invaluable information and resources. She encouraged us as we began to learn ASL and to teach it to our son. In the Spring after E's birth, we got a Deaf Mentor added to our ISFP, who was also a teacher at the school. Even with our meager signing abilities, we began to see how successful a Deaf adult can be, and we had our first glimpse of the richness of Deaf culture.
Through the winter after E was born, we began to learn more about what ought to be available to him. By the time he was 8 months old, we decided to go to a different hospital. Within two days they were able to give us the diagnosis of sensorineural, severe-to-profound, bilateral hearing loss and had him fit for hearing aids. We diligently continued to sign with him, because we believed that it was of vital importance that he have access to language. The hearing aids turned out to be of so little help to him, that for the following months he wore them only occasionally. Truthfully, we didn't see the point. Why push hearing aids when he seemed so happy signing?
Coming to terms with Deaf
We had, of course, heard of cochlear implants, and we knew that E might be a candidate. Our philosophy had always been that E should have every tool we could provide. So, we agreed that if E were found to be a candidate then we probably would implant him. But we didn't want to make this decision blindly, so we began to do some research. We researched not so much the medical aspects of implantation as much as the cultural and educational aspects. We continued to value the idea of bilingual education, to which we added the idea of bicultural education. It seemed like the implant, should E be a candidate, would facilitate those goals. Still, we had serious concerns.
Would E be accepted by the Deaf community if we implanted him? We knew that the Deaf community was diverse, and that it was divided over the issue of CIs, especially in young children. We worried that CI wearers might be labeled as not truly Deaf ('think Hearing'). We worried that E would some day regret our decision to implant him. We worried that we would come to rely too much on his audition in communicating with him, and allow our commitment to signing to fall by the wayside. In the end, we decided to stay true to our original commitment to give him every tool and every opportunity.
Parents always want to give their children every opportunity. Lots of parents push their children academically, so that they will be well positioned for college and the workplace. Other parents push their children athletically, encouraging strong leadership skills and discipline. Parents will sacrifice everything to give their children the best school, the best clothes, the best home, the best food, and so on. And yet, many children grow up deeply resentful of their parents. Why is this?
"Dad," they may say, "you gave me all of this stuff, but you never had time to take me fishing." "You always pushed me in school, but you never took the time to find out what I think about things." You never had time. You never valued having a relationship with me. I believe that is the source of most resentment. What makes the difference for our children is that we work hard to maintain our connection to them, on the deepest levels. That we listen to them. If we do this, then they will trust us, and love us even when we make mistakes-- which we are bound to do.
Will E resent his CI? I think that's up to us. So far, we haven't lost a bit of our momentum with signing, and we are working hard to connect him to the Deaf community. I suspect that many CI kids grow up completely unaware of the Deaf community. All they know is Hearing, and in that world they are 'disabled.' No matter how many assistive devices they access, they still are 'other'. They are deaf kids pretending to be hearing. And that raises all kinds of self-esteem issues which can easily translate into resentment against hearing authorities, including parents.
I believe there is an ethical issue here. If you were white, and you adopted a baby with black skin color, wouldn't you be obligated, for the sake of your child, to tell them that they are Black? Wouldn't you explain to them that you love them and want to give them all the best things that White culture has to offer, but that you also want them to feel at home in the Black culture that is their birthright? Why deny your child the benefit of community with people that share not only his color but also his social challenges? Why deny your child the support, the encouragement, and the resources for success that his 'native' community has to offer him?
Being Deaf is like this, I think. We realized early on that E would always be deaf, with or without a CI. With or without the CI, then, we would teach him that he is Deaf. ASL would still be his language, the way English is our language. Forging and maintaining a close relationship with our son would mean that we continue to learn and use ASL as a way of reaching him in his world, on his terms, even as we ask him to reach into our world, by learning English.
It's hard, that's for sure. But whenever I feel frustrated with my poor ASL skills and feel like giving up, I remember an image I saw in a movie once, of a deaf child. It was a family photo, projected full screen. The child was in the far corner of the back yard, tiny in the frame, sitting alone on a lone swing-- not swinging, just sitting, and looking blankly off into the distance. What an image of isolation, of alienation. In the past, deaf children typically headed off to a residential school for the deaf. There they learned ASL, were taught in ASL, and developed close cultural ties with other Deaf. This, of course, is a good thing.
Then come the Christmas holidays. The kids head back home to their hearing families. There they find that life has moved on without them. After all, they never did have any real connection at home, and they find that now they have even less of a place at home. They can't really communicate, because their parents don't know ASL. Thus, Deaf children feel more and more alienated from their biological families. They respond by clinging all the more tightly to their cultural family back at school.
We couldn't bear the thought of losing our son. We determined that if he were going to be Deaf, and if ASL were to be his primary language, then we would follow him into that world. We would make a place for ourselves there. We would learn ASL, make it a part of our lives from the beginning.
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