I knew from the moment I saw Evan in a photograph that he was my new son. I also knew he was profoundly deaf. I did not widely publicize this detail, partly because I didn’t want to be called a lunatic by my dearest friends. But also, I didn’t want Evan to be known as the “deaf kid.” I wanted the focus to be on Evan as my new son and Ben’s new brother.
For more than a year prior to meeting Evan, we prepared. Ben and I attended sign language classes. I researched online. Along the way, I read about the latest technology, cochlear implants. Most people have by now heard of these. A brief internet search will turn up dozens of videos of kids hearing their parents’ voices for the first time. On the periphery, they seem to be a magical “fix.” I had done enough research to realize that they are not. They are useful to some people, but not for others. I adopted Evan knowing and accepting that this was quite possibly not an option for him.
A quick tutorial: There are two parts to hearing. There is the access to sound, and then there is the processing of that sound. Without processing capability, sound is, well - just noise. From the time a baby is born, they are hearing sounds and their brains are building the neurological pathways to process those sounds. If a child has not been exposed to sound, the cochlear implant can give the child access to a lot of sound, but it will not be meaningful because those pathways are undeveloped.
Today we went to an audiologist that specializes in evaluating candidates for cochlear implants. She explained that they surgically implant a device into the head. There is another piece that the child would wear outside. It adheres to the implanted piece by a magnet. This would give Evan access to a lot of sound. Unfortunately, this could be very annoying and probably not very helpful. The audiologist went on to explain that at Evan’s age it would likely take intense therapy to help Evan develop any speech. She elaborated that even with considerable intervention; she did not think he would be capable of spoken conversation. (However, he will have the capability to converse in ASL.)
The audiologist suggested that we could continue with the trial with hearing aids that Evan is now involved with at school. He has worked up to wearing them for 30 minutes. She recommended pursuing outside speech therapy, too. What would a speech therapist work on? Recognizing the presence and absence of sound, and patterns of sound. This approach would likely not lead Evan to much useable speech, but it would give him an awareness of sound. In time, there may be a few words.
I expressed that I hardly thought it would be worth risking surgery and the hours of effort it would take to produce a limited amount of speech. Certainly, Evan would be better off spending his time developing reading and math skills. I asked about more classes to further our fluency in ASL so that we could fully integrate with Evan’s world. I hoped I sounded steady, mature, and accepting. I could feel that tightness in my throat and a slight stinging in my eyes.
The doctor kindly offered to call ahead to the surgeon and cancel our consult. She suggested that we may revisit this question if Evan really takes an interest in sound with his hearing aids. She asked if I had any questions. “Not really,” I said. I would follow up by looking into information about more ASL.
There was a toy box in the corner and Evan had been playing throughout our entire conversation. He was oblivious to the gravity of the discussion, to the possibility that he had essentially been ruled exempt from. I smiled at the doctor and thanked her for her time. Evan and I left. He looked at me as if to say, “What was that about?” I just shrugged and told him, “C’mon.” He waved goodbye to the ladies at the counter.
We got in the car and headed towards the nearest Dollar Store. I remembered that I needed to make some kind of Easter hat for Evan for a school parade later this week. The rest of our afternoon was suddenly clear. Evan was in the back seat playing with toys. I desperately did not want to feel disappointed. I knew ahead of time it was not likely an option for Evan. From the moment I decided to adopt Evan, I accepted him along with his deafness. From the beginning, I did not delude myself into thinking that we would just “fix” it. Despite that, as I drove I fought back tears behind my sunglasses. How strange it was to now be on the other side of this question. I glanced back at Evan. He was looking out the window. I reached back to touch his leg and missed. I pulled my hand back, afraid the gesture would betray my emotional turmoil. I didn’t want Evan to sense I was upset. He made a sound to get my attention. I looked back and he was smiling at me, holding his leg up to meet my hand. I reached back and held on for some time.
Recently my sister Peg sent me a book called Far From the Tree, by Anthony Solomon. The author writes about children who are different in some way. It is a heavy, enormous book with chapters dedicated to various issues and conditions. The author begins by discussing how disability often becomes identity. He talks about the grieving a parent must go through on the way to acceptance when their child turns out to be different. I cannot lay claim to such emotions because I chose Evan as he is. I am not sad because he is deaf. Today, I felt sad for Evan, that he will not have the benefits of speech. As a parent, I felt deep regret that I cannot fix this for him. I think back to the beginning, when I didn’t share that he was deaf for fear that this would label him – that this would be all people would think of when they thought about my new son. When I looked into my rear view mirror and saw my little guy looking back at me, I saw both – a gregarious, smart, funny, stubborn seven year old, and a deaf child. It’s all he has ever known. Deafness is part of his identity; he does not see it as a limitation. I watch Evan do everything other kids do – and more – every day. He is perfectly ok with it. And so am I.
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