Hearing is important, can you HEAR me?
Learning to live with deafness and a cochlear implant
Sunday, October 05, 2008
No, not that......
I think when most of us hearing parents find out that are children have a hearing loss, besides appearing deaf ourselves, "What?", "What did you say?", we also suddenly become stupid, "What's that?, "What does that mean?", "What IS deaf?" I know that I did. I remember trying to breathe in/out and asking specifically, "What does that mean?" "How deaf is deaf?" Of course when they start explaining the audiogram and the results I was basically a bobble-head. I nodded my head in all the appropriate pauses and left still not knowing a thing other than my baby couldn't hear. As time went on, I learned a little bit more. I learned that the first ABR was read wrong (thanks to the audiologist at Riley's for that little snafu) and that Max did not have Moderate to Severe hearing loss but in fact had Severe Hearing Loss. I eventually learned how to read the audiogram and about the speech banana and how my son was never going to get all the sounds on that speech banana with hearing aids. So we moved on to the cochlear implant. But there is ONE thing I DID KNOW and the very thought scared me.
I know that when I found out, a lot of things went through my mind. I could almost picture myself in my brain walking down a long hallway (appropriately labeled "Deaf Hall") with doors lined up on both sides. The doors had little titles on the outside which kind of gave you a clue as to what's inside but didn't. I would open a door go in look around and feel it out. One door would be "Sign". I'd go in, explore in my mind signing and ASL, how our family could learn this, we could have our own secret language, how am I going to do this and drive, eat, wash dishes, ok. we can work this out. The next little door would be "Ridicule". I have to tell you that was a hard, cold room and I didn't like it. I tried like heck not to stay in there to long. But of course, being human and I guess a little sadistic in nature, I'd go in there again and again, like a rubbernecker at a car wreck. Don't want to see but dang, just can't help it and then when I'm done feeling raw, exposed and like crap. There were some other dark and scary doors in there,in my mind. But there was one door that scared me the most and still does. I can't even bring myself to actually put a "sign" on this door, I skirt as far away as possible from this door, but this door is different, it pops up in front of me, out of nowhere and looms begging me to come in and see what I can see. I know better than this, but yet it is there and it is real. I put that door out of my mind but this past week it jumped up in front of me again. I found this blog on "Deaf Village", http://deafness.about.com/b/2008/09/28/more-on-sexual-abuse-at-deaf-schools.htm Obviously, I saw it, read it, and it scared me so far down to my bones that I had to mull it over in my mind before I could blog about it. I think that THIS is one of the things that scares a hearing parent of a deaf child more than anything. I know it does me.
In my BC life (before children) I was a paralegal. I know that even hearing children are susceptible to these monsters that prey on children. I know how devastating it is for the child, the family. One of the reasons that I stopped being a paralegal when I was 8 mos. pregnant with my daughter is there was NO WAY I could work with someone who represented a child moslester/pedaphile. The stakes were too high in that little mental challenge. I didn't do well with it before I was pregnant and well, knowing that I was having a girl, that was it. Besides that I was sick of seeing the same people over and over, divorces gone wild and all the other stuff people do to one another. But a deaf child, this goes way beyond what I can comprehend.
When I found out Max was deaf, I did not know what it meant, what was going to happen, if he would have to go to the residential deaf school in our state, if he could go to our school and all these fears jumped out. The thought of sending my child to a residential school 2 1/2 hours a way at 5 years old literally made me want to break down right then and there. I was already attached to him, how could I possibly send him away to live for the week and only see him on weekends and holidays?????!!!!! I still can't bear that thought, that he might choose to go to the Deaf School at 16 or so. I don't want it and pray constantly that he stays with me. I can't even bear the thought of either of my children leaving for college and cried during the movie "College Road Trip". But the above blog is frigtening and not the first I had heard of this. Apparently it happens quite frequently and there is actually a book about it. I read it, because again I'm sick that way and obviously like to torture myself. I was miserable for months after reading it because I know that it is a very real threat to deaf kids. I also know that the threat just isn't at a residential deaf school, it's everywhere, just more prevalent at residential schools for the deaf.
This is just ONE of the horribly scary thoughts that goes through our minds when we find out our child is deaf. There are a WHOLE LOT OF OTHER scary doors we have to work through, BUT this is just one of the reasons we chose to have Max get an implant. Can you HEAR me?