Thursday, January 19, 2012
For those of you unaware I have a genetic sensorineural hearing loss. What that means for me is that I cannot hear sounds in the lower ranges (such as mens voices) like I should. I can hear perfectly normally in the upper ranges, in fact I can hear some higher sounds I shouldn't be able to hear. And I read lips like a champ. In fact my audiologist has never seen a person before who can read lips like I can that hasn't had lessons teaching them how to do it.
Thing is my mother can do it to. Because she also has my exact same hearing loss (or she did. Because of cancer treatments she has now lost all hearing in her left ear and some in her right). In fact when I was a teenager our doctor remarked how he'd never seen anybody with matching audiograms before.
I think thats also why we both read lips like professionals. I have the same hearing loss my mother does. She has the same loss her mother did. I think somebody figured lip reading out back in the day and just taught their kids like it was second nature. My little sister got tired of not being able to understand what we were saying and she picked it up too even though she has perfect hearing (my Mom's brothers are fine). Now all 3 of us can talk across a crowded room with no problems and our husbands have no idea what we're saying *snigger*.
When I was an infant there was no technology to help my kind of loss. When I was 8 they came out w/ a really obnoxious contraption that had a speaker talk into a mic wired to a box and me wearing giant hearing aids connected by wires to another box. That didn't last long. So I just gave up. Sat front in center in all my classes and explained to my teachers I needed to read their lips.
That is until I was 18 and the school nurse explained to me I should look into this hearing loss thing as a source of scholarship money. THAT got my attention.
Thats when I realized how profoundly deaf I am. Because I don't sound deaf (my voice is well within my hearing range). But it wasn't until I started handing my audiogram to counselors and social workers and saw their jaws drop and they started stuttering about how they can't believe how functional I am and how good I sound do I realize just how much of a loss I have.
In the lower ranges I am profoundly deaf. The bane of my existence are deep southern men's voices that are already so low they're in the basement and then they compound the problem by not moving their lips when they talk. Lord save me.
That and every roommate I ever had, after a few days living with me, every last one of them would say something to the effect of, "Wow you really are deaf huh? You sure don't sound like it". (Probably b/c I don't shut up).
The upside is that technology had improved over the last 10 years and I was finally fitted w/ hearing aids that really do help things (I wasn't sure how big of a difference they made until I was on my mission and my companions would go, "You're not wearing your hearing aids right now are you?"). (FYI Cochlear implants won't help w/ my kind of loss b/c theres nothing wrong w/ my ears. The problem is apparently in the nerve/brain area.
Fast forward to having my first (and so far only) child. When I was pregnant with Caleb I used to stay up nights worrying about how my hearing (or lack thereof) might affect things. I was scared that I wouldn't hear him cry. I was terrified I wouldn't be able to give him the proper feed back to help him develop as he should.
The first fear went away by the first week after I gave birth. I don't know how but I would wake up if that child's breathing changed. He didn't even have to cry. And if I'm out of the room I make sure I have my baby monitor and that it has lights that go off and flash at me when he cries and I makes sure I have it directly in my line of sight. So the crying has mercifully never been a problem.
And I have mostly been okay about his speech ever since I talked it over with my family who pointed out that my sister and I's speech turned out just fine and my mother (at the time) had had the exact same loss that I did. So I started breathing again.
That and I knew that if Caleb had my hearing loss that it would show up from the very beginning (like everybody else's did) but Caleb passed his new born screening with flying colors and responds very well to my fathers ultra deep voice (he apparently uses a higher tone when he talks to me).
My pediatrician has been super paranoid though. For Caleb's first birthday we had his hearing checked again with Cardon Children's Hospital. He passed with flying colors. For his second birthday we did the hearing test AGAIN (the doc said if he passed this one he'd wait until he was 4 to do another one) and once again he passed. He's passed not only the screening tests but all of the milestone markers they want him to pass.
I know this is really long and I've got some more to say so I apologize I just need to get this out.
Now I'm starting to have a bit of a problem. And the pediatrician warned me about this - Caleb is big. He's huge for his size. He's literally off the growth chart for his height. Well over the 97th percentile. He's only 90-95th percentile for weight so he's a string bean but he is TALL. And the problem with that is that people expect more from him because he looks older. The doctor warned me that people are going to ask whats wrong with him b/c they think he's a lot older than he is.
Its easy to forget he's only 2.5. Heck I find myself getting frustrated and then I try to remember - he's only 2.5, keep your expectations realistic for his age. And I take a deep breath and I refocus.
And ya know I laughed at that doctor, because I figured the people who matter would never forget it. But I myself start to do it sometimes. And it hurts when people who should know better ask me if he's okay. They think that he's slow or not developing right b/c I can't parent him properly with my loss.
And in some ways their questions are fair. Caleb is way ahead of the game in the fine motor skills department. He knows all his letters, and half their sounds. He knows half his numbers and tries to count (though it usually goes more like 1, 2, 8, 9, 10!). He's super bright.
And he knows LOTS of words. When we read books (and he is in the mood to do so) he can point out every thing in them and at least take a pretty decent stab at pronouncing the name (elephant is hard and "ear" comes out more like "eeeawh"). He'll even sing a long with me sometimes.
And he has certain words and phrases he uses ALL the time. But he's not talking too much yet. He'll have a babble conversation at you but if you ask him how he's doing he'll just smile at you. When we're at home he'll talk a fair bit but he doesn't like to do it out side the house usually. He prefers to just grab you by the hand and drag you to whatever it is or point and get excited.
And so I can see how if you don't see him outside his space when he's in a cooperative mood you might think he doesn't talk at all (I say mood b/c I think he'll stop talking just to vex me).
But Cardon Children's gave me (from our first meeting when Caleb was just a year old and again at his 2 year screening) a packet of pages outlining the developmental milestones for speech and hearing by age and said that as long as he kept meeting those mile stones we're doing great. They also gave us a list of suggestions to help.
I do every last one of the things on that list. Well, I don't always use bath time as "sound time" but I get down on the floor of the living room with him to play and do the exact same things. Other things it says is to talk about things as we're doing things and going places. Narrate your life basically. Cuz I didn't talk to myself already. Now I sound like my mother (love you Mom).
I do phonetics with him (Clock says tick tock! T-T-T-T- Tick Tock!). I do all of the sound play - I let him feel my throat as I make "rrr-rrr-rrr" noises and hold his hand to feel the air of "p-p-p-p".
I expand on the things he says: "Car!", "Thats right! Thats a red car! It goes VROOM!"
I read at least 1 book with that kid EVERY SINGLE DAY. And we point out the pictures (I do it first and then he takes over) and we point out the letters and say their names and their sounds.
And as far as the mile stones go here are the lists for ages 2-3 (aka what he should be able to do by the time he's 3).
Hearing and Understanding
- Understands differences in meaning ("go-stop", "in-on", "big-little", "up-down") CHECK
- Follows two requests ("Get the book and put it on the table") NO PROBLEM (unless we're not at home)
- Listens to and enjoys hearing stores for longer periods of time. (Some days I wonder if I will ever get my finger back as we read stories - b/c clearly stories are best read while maintaining a death grip on Mom's pointer finger for use pointing at things on the page).
- Has a word for almost everything (Admittedly we're still getting there on this one. Getting him consistently to USE the names is still hard. But he LOVES to name things and enjoys asking for food by name - and we have time. He's not 3 yet).
- Uses two- or three- words to talk about and ask for things (He does this multiple times a day but not EVERY time "There it is" while pointing to what he wants, "Mom! Dad! Come on! Lets go!", "Oh kitty! Oops! There he goes! Bye Kitty!")
- Uses k, g, f, t, d, and n sounds. - kitty, go-go-go (his words for Cat in the Hat), phone (same sound), fishie, tick tock, and nana - CHECK.
- Speech is understood by familiar listeners most of the time. - Adam and I have no problems understanding MOST of what he says. And his most common baby sitters (my friends Kathleen, and Felly or my SIL Natalie or MIL Donni) all understand him no problems.
- Often asks for or directs attention to objects by naming them. - He's doing this more and more - he now points to the bananas on top of the fridge and asks for them by name, he'll ask for my phone by name, he points out every single clock we see with an excited "T-t-t-t!" sound. He's trying to say "Tick tock" but that one is a work in progress.
SO thats what he's supposed to do by the time he's 3. He's only 32-ish months old so I vote we have some time.
So please before you question my sons development and send me scurrying to my list again to MAKE SURE WE'RE DOING EVERYTHING (b/c thats what I do so I don't curl up and cry in fear that I'm a horrible mother) please make sure that your expectations are the same for him as they would be for a much MUCH smaller normal sized 2 year old.
He's only 2 after all.
Posted by Ami at 3:33 PM