Monday, September 28, 2009


Last year, I walked into the Symposium for Early Childhood Deafness with my newly diagnosed profoundly deaf baby boy. I sat through hours and hours of lectures, my brain exploding with new knowledge about things I never thought I'd need to know anything about. Cochlear Implants. Hearing Aids. Cultural Deafness. Total Communication. Oral. Auditory Verbal.

All of it was covered, in different sessions, all with different slants depending on the background and opinion of the presenter. Because the conference is held by the Department of Education, they present a balanced viewpoint, showcasing an equal number of presenters and lectures on both signing and CIs.

I listened to speech pathologists talk about the best way to use sign language in therapy. I was told that it was imperative for kids with hearing loss they they follow the 1-3-6 model...diagnose by 1 month, amplify by 3 months, and enroll in therapy by 6 months. Luckily, Seth fit in that mold...he was diagnosed at 2 weeks, had his hearing aids at 6 weeks, and started therapy at 3 months. We were ahead of the curve. I listened to geneticists talk about the latest reasons they thought hearing loss occurred, and the odds of passing it down in a family. I wrote down the names of obscure genetic tests that Seth should have that not many clinics were doing preemptively yet.

I wandered the exhibitor's hall and met parents who'd moved their whole families to St. Augustine to attend the school for the deaf and blind. I met parents who had kids with one cochlear implant, and even one who had two. I talked to parents who signed, and parents who spoke. There weren't many that chose to do both with their kids. I listened to reps from different schools tell me about each communication style, and saw demos of products I never even knew existed, like smoke alarms that shook your bed. I compared three different brands of cochlear implants, although I wasn't even sure that's what our choice would be.

Everyone was nice, and they all went on and on about Seth, who spent most of the conference sleeping in his bassinet attached to his stroller. I left feeling overwhelmed but with a clear purpose. I needed to get Seth into therapy. I needed to decided our game plan, and whatever it was, put it into play.

Over the next year, I did just that. We took sign language classes and Seth had a deaf educator in the house every week. I had him in speech therapy by the time he was 12 weeks old. Within a month or two, we had decided cochlear implantation was the way to go for our family, and we started trying to make that happen. Then we decided we weren't waiting until he turned one, and we fought our insurance company and started fundraising for Seth. When a roadblock came up, we changed our route. When our insurance said no way to two, we were blessed with the opportunity to change insurance companies, to one that did allow bilateral surgery. When it became clear that our goal of early bilateral implantation wouldn't be a possibility at the center we were at, we changed to a new surgeon when Seth was 6 months old. He fast tracked us and when our insurance denied Seth's surgery due to his age, he appealed it and had the denial overturned in less than 24 hours. In just a few months of fundraising, we had the money to cover Seth's exorbitant surgery costs.

Seth was incredibly blessed. When he was just 8 months old, he received both of his implants in one surgery that lasted just under two hours. It was incredibly short, and we had been led to believe from others who had been through it that it would be over twice that length. He was activated four weeks later and when I called his name for the first time, he turned to me and laughed.

That has been Seth all the way. He loves to hear. He was localizing sound by the day after his activation, and he was saying words within weeks. When he turned one, his speech and language evaluation graded him at 12-15 months. Not delayed. Our deaf baby had no language delay. All the work that had gone into the past year was worth it. He was hearing, and he was loving it.

That's where Seth was at when I headed into the conference this year. Same people in the exhibitor's hall, some of the same presenters, and some of the same type of lectures. But I came away from it with a totally different feeling.


Yeah. I know. Seems weird. You see, last year when I left, I had a hard but relatively simple job. Get Seth what he needed. He needed CIs. We made that happen with the help of God and lots of other people. Now that he has his implants, it's not so simple. He's made it to one year with no delays, but the bar just got immeasurably higher. After a year of age, kids language explodes. After two it expands exponentially. Will we be able to keep up? It's just getting harder, with a wiggly 14 month old who is more interested in learning to walk than learning to talk right now.

This year, I walked in with my babbling, crazy haired one year old with bilateral implants. I sat through lectures on the state of the nation of kids with hearing loss, if you will. There have been studies that followed a ton of kids...about 700, and we were shown where they were doing well, where they were doing ok, and where they were doing poorly. They were doing poorly in a lot of areas. It was overwhelming. What most people don't realize is that kids with hearing loss learn differently that other kids. Even when they hear well, for instance at a level of mild hearing loss, they're still missing a TON of what goes on in the world. They don't learn incidentally the way hearing kids do, they can't eavesdrop on conversation and learn all kinds of things they're not supposed to know that way. For the most part, kids who use CIs and hearing aids only learn what you teach them.

Think about that for a second. How many times have you been amazed by your child telling you something in spanish that they saw on Dora, or a prayer they picked up on the radio? Seth has a bubble, if you will, of good hearing, where he can hear clearly. He may hear us call him from further away than that, but it's going to be mostly noise when you're more than a few feet away from him. It changes a lot. Because these kids learn intentionally, they are very literal. What you teach them is what they know. They grasp concrete concepts like what and where, but when and if are hard for them to grasp. Have you ever tried to teach someone whose first language is not english what "the whole nine yards" means? They have no clue, no concept of theoretical or idiomatic language. How do you teach that? At this point, I don't know. But I know that this is where these kids are struggling. For instance, Seth has about 15 words right now, and do you know how many he has learned that I didn't sit down and expressly teach him? One. One word that he picked up on his own out of fifteen. Book. And that was amazing.

So leaving the conference this year, which was filled with so many great and interesting people and who taught me so much once again, I was surprised. Some people that welcomed us last year didn't really talk to us this year, because the processors on Seth's head didn't fit in with their teaching or their school. Reps from the other CI companies didn't speak to us at all. Others, who saw his gear and knew we had chosen the way we did, swarmed us and were fast friends. It was odd. I am still overwhelmed, but this time, my job is not so simple. It's not going to be as easy as simply fighting for my baby to get the surgery he needs. It's so much more complicated...I have to learn how to teach him, because no one else can. One hour in therapy a week isn't going to cut it, and even when he's in school, for kids with hearing loss, every minute has to be a teachable one. They are missing so much that other kids get without even realizing it, and it's going to be up to me and his support system to fill those gaps in for him.

This is what I want people to know. Getting your kids implanted is not the finish line, it's that starting line. Activation day is just the starting gun going off, the clock starting on the rest of their lives. It's up to us as their parents to teach them to listen, and once they can listen, to fill their ears with things that they need to know. It won't happen if we don't do it, if we don't put them in the right places with the right people who will continue to teach them well and with understanding for their differences once they're in school. It's little things. It's sitting the CI kid next to the teacher for circle time, it's cutting down on acoustic noise in the classroom with tennis balls on the bottoms of chairs. It's remembering that even though they look, talk, and act like a normal hearing kid, sometimes they're not. This is a lifelong challenge, and it's one I want to prepare Seth to take on for himself one day. I expect him to be able to advocate for himself one day, to teach his classmates about his equipment and explain to his teachers how he hears. But before he can do that, I have to do it for him. It's a big job, but he deserves someone to do it right.

It's not so different from any other kid, really. It just takes a little more intentionality, and that can be hard in these days of fast food and fast learning, when kids are reading in Pre K. There are lots of choices we'll make for Seth, probably just as controversial as implanting him in the first place, like whether he'll go to a mainstream school or a deaf one, whether we'll start him on time or hold him back a year. Whether ASL or cued english will ever be a part of his life.

It's just funny what a difference a year can make.
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