What *IS* the language of Emmett John?!
9:14:00 PM Posted In 1 year , Crazy Me/OCD , Daddy/Rob , Dr Appt , Elliott Richard , Emmett John , Family/Friends , Fibromyalgia , Gavin , Life , Medical/Health , Parenting , Preemies , Profoundly Deaf , Stressed/Exhausted , Worries Edit This 3 Comments »
I took Mr. Emmett John to his Audiologist appointment on the 20th, whatever day that was. I can't remember anymore. You'd think I would remember that day. I feel like I should. I feel as if it should be etched into my brain forever:
Wednesday, January 20th, 2010 @ 3:00pm: Emmett John's world officially closed off forever.
Emmett doesn't like to have his ears messed with. Even to have them checked by Dr. H for a run of the mill ear infection I have to hold his hands down with one hand while I hold his head against my chest with the other hand. He hates it. So when she tried to put the little things in his ears to see if his eardrums even moved, forget it. The different and smaller little things to actually test whether or not he can hear sounds, not a snowballs chance. In stead she tried a rather crude method.
Emmett John sat on my lap with a little round tub of rubber beads to play with. The Audiologist Assistant (?) sat across from us to watch Emmett's face for startle reflexes and various reactions. The Audiologist left the walk-in-freezer...er sound-proof room and went on the other side of the little window. Then she began calling out to Emmett John through the speakers. She started at a whisper and increased her volume until she finished up screaming. He didn't flinch. He didn't move, startle. Nothing.
It took literally everything I had in me - everything good and bad and indifferent - to not react and accidentally tip him off.
Then when he wasn't responding at all. It took all those things not to tip him off and not to fall apart.
I was beyond devstated. My baby couldn't hear her. She moved on to the beeps because A) she has to and B) sometimes it seems as if he can hear loud, high-pitched cell phone ringtones. She began at a whisper and slowly increased the volume with the lower tones. Nothing doing. Then she switched to the high pitched tones. Again with the whisper slowly increasing the volume. Nothing doing. At one point she turned these monkey noise making toys on that sat in boxes above the speakers. He reacted to those and we all went wild. Then she said she wasn't comfortable marking that he reacted to the noise because he could have seen the lights out of the corners of his eyes.
My heart broke again.
In the end, she said that if Dr. H had not already been recommending the ABR she would insist upon it. His OAE had not shown any clear results expect that she felt comfortable saying that he is at least suffering from moderate hearing loss. She said that he cannot hear at 45 decibles, which is human voice. She then went on to explain that there is a very slim chance that he can hear at 65 decibles and above, which is a screaming human voice. However, she is absolutely comfortable saying that "he cannot hear at 45 decibles and suffers from at least moderate hearing loss".
I've been working on teaching myself basic American Sign Language with a website so that I can try and communicate with him in some way. He has to have something. I can't imagine what it must be like to not be able to hear anyone. Not be able to convey your needs to anyone. It's no wonder he's been walking about pinching and hitting and all out screaming for ages now. Rob and I spoke to Dr. H on Wednesday at Gavin's 10 year check-up and we also feel certain that nearly all the appointments where I drug Emmett John in to the office saying "He's fussy, won't sleep, just screams and pulls at his ears." he was pulling at his ears because he was likely losing his hearing and we didn't know it. If only I had followed my mother's instincts all those months ago! I wonder what may have turned out differently.
Anyhow I can't do anything about it now. What I can do, what I am doing is learning ASL so that I can communicate with Emmett John, at least until he picks it up as well. I'm not very good and I don't know very many signs. Emmett John seems tickled pink that he can understand though. He signed his first word the other night, Daddy, which was HUGE! I'm teaching Rob what I learn as I go along. I try and teach Gavin and Elliott Richard, too. Gavin wants to learn as much as I have to teach him. Elliott Richard flat out refuses to learn. He just keeps yelling at Emmett John in stead.
It seems that every time we start to find some semblance of normal around here...I don't know why we try.
We can't get in for his ABR test until March. Dr. H tried to convey to the lady that he would like Emmett John's case expedited. She got snippy and told him that the 25 children ahead of Emmett John would like their cases expedited as well but it doesn't work that way. Emmett John will just have to wait. Dr. H then asked that Emmett John be put on a cancelation list and she tried to make it sound all horrible - like I would decline because of short notice or something. Clearly she doesn't know me - well, obviously but you get my point. So now I have to wait for her to get off her high horse and call me with an appointment because she wouldn't make it with Dr. H's office because "that's not how I do things!" ARGH! Like things aren't complicated enough? I need a chick on a power trip?!
This whole situation is just making me sick. My fibro meds aren't nearly as effective any more. I'm having migraines all the time. It's just crazy. And because I'm the ASL one in the house right now, Emmett John is my shaddow. Never mind Henry, my new dog, whom you know nothing about, thinks that being supportive translates to being under foot where ever I go. Elliott Richard wakes up at 3am lately. Heck, even Emmett John has been waking up at 3am for some God awful reason! I don't know why he does it because unlike Elliott Richard, he's clearly not bright-eyed and bushy-tailed and ready to go. He's just a great big fuss pot looking to make my life a living Hell - totally uncool.
My Mom is actually worried that I'm going to snap under all of the stress I'm under right now. I'm not sure if I should feel flattered that she cares so much. Shocked because she's managed to see through my facade so quickly when I've known other far longer and they're still in the dark. Or offened because she seems to think me so fragile. (lol)
Oh well, that's all we know on the Emmett John front. I didn't intend for it to be so long. Sorry about that. Oh, and by the way, if I ever refer to him as MJ it's just a carry over from signing. We've found that MJ is easier for everyone to sign (especially quickly for some of us) than EJ. So just make a mental note: MJ = Emmett John. =)
