Mother of a Son (Part 1)
I appreciate your story. As the mother of a child who is deaf I "totally get" the feelings and emotions of doing what is best for your child. Your decision, as well as your sons, to not get an implant "works" for your family. Your son has language (ASL) in place, he has people to converse with, his family and friends, he has role models, again family and friends in the deaf community. Choosing to not implant your son, especially since his wish is to not be implanted makes total sense. I don't feel that either of you are broken. You obviously have done very well for yourself and are a compassionate, caring person who is raising a child with those same qualities. (Who maybe almost got bit in the butt with the cochlear implant issue. LOL-funny how things seems to come back and do that.) However, our story is quite different.
My son was born 1/28/05. He was a beautiful baby boy, my second child as I had a daughter in 2001. I specifically remember one night in the hospital, it was late and we were both up and I was marveling over him and lo and behold he was marveling over me as well! We were both lying there in that bed and our eyes connected and wow as a mom it was deep and emotional and I will never forget it. The bond. We left the hospital as a happy family of 4. We applauded every milestone that my son reached. When my son was a year old, I noticed that he did not even attempt to say words. Not one.
Hmmmmmmm, this was different. My step-dad is a doctor and I questioned this observation with him. Yep, he noticed it as well, BUT he was the second child, and a boy, his sibling was a girl so he might not be talking because she talks for him. I still didn't feel right about this and pressed on. In March we finally got an appointment with a local ENT. They did the tympanetry test and it was discovered that my son's tubes were full of fluid. No wonder he couldn't hear. He was scheduled to get tubes in his ears in April 2006 and he did. By the six week post-op appointment I was again questioning the ENT. I told him that I still didn't think something was right, that he didn't appear to be babbling yet, or even mimicking sounds that I would make. From this ENT I got; he's a boy, he's a second child, some kids take longer to talk. At this point my son was going on 15 mos. I am his mother and I still had this feeling in my gut that all was not right.
We have the bond, my son and I. I was afraid of autism, PDD and expressed my concerns again with my step-dad who agreed that we needed to get to the bottom of it. If my son was in fact not talking because of my daughter or if it was something else we needed to find out. My step-dad got us an appointment with the pediatric developmental doctor at a children's hospital 2 1/2 hours a way. He faxed me a copy of the paperwork that was sent to him and I noticed on one of the forms they wanted to know if my son was in our state's early intervention program. I called the office myself and asked what that was, what they did and how did I get a hold of the early intervention services. I called and an evaluation was set up for the next month.
The evaluators came to my home one morning and played with my son with specific toys to see how he was in all areas of development. I remember one of the evaluators rang a 90dcb bell and my son did not even flinch. That evaluator told me that she thought my son had a hearing loss. The good news was they didn't feel that he was autistic or have PDD. Although to be honest, at the time I didn't know what was worse. This started a frenzy again and we called the audiology department in that same children's hospital. Not knowing where else to go. Now let's take into consideration that my son passed his newborn hearing screen before he left the hospital and I remember specifically when that when one of his toys had the music turned on he would scream and hated it.
We go to said hospital and they run the booth test, inconclusive because my son is too young and unreliable. They do a sedated ABR and tell me that my son has moderate to severe loss in his left ear and severe loss in his right ear. WHAT? WHAT DID YOU SAY? I don't understand. I'm shaken but not crying, yet. I don't cry until some doctor comes in and tells me he's sorry, he doesn't know what the future holds for my son and at least it's not 30 years ago or else my son would have to be institutionalized. WHAT? We leave with no instruction on how to proceed whatsoever. Where to go from here, what to do, who to contact, nothing. It is at that part, I start to cry. I don't know what deaf is. I don't know a deaf person, no one in our family is deaf. No one knows of any earlier generations of deaf persons in our family. I'm crying because I don't know what it means, I don't know what to do or even how to begin, and guess what, no one in my family can offer advice.
So I make an appointment with an audiologist for hearing aids. My son gets fitted, we get early intervention services with a speech therapist twice a week. My husband and I enroll in ASL classes to the tune of $185.00. I am not a person to sit down and let life bowl me over so I start moving and read and call every outlet I can regarding hard of hearing and being deaf. While doing all this research on my new challenge, and dealing with a range of emotions and what ifs and total fear of the unknown I found out that the audiologist at said children's hospital was wrong and that my son is severe-profound in both ears and will never get enough benefit from hearing aids to gain speech. So thus starts a whole new slew of emotions; what if my son is driving and gets pulled over and the cop thinks that he's reaching for a gun rather than a piece of paper to write down that he is deaf, how is my son going to order food in a restaurant, my son is never going to hear the ocean (something I love), my son will never hear me say "I love you". I know that the deaf will say that ASL "I love you" is the same as hearing "I love you", but being a hearing person my entire life it's not the same, not to me.