cochlear implant

Ellis has a cochlear implant. Implanted July 2, 2007, activated July 24.

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Ellis runs ahead of me in all his four-year-old boy vivacity. As I lumber along with the baby on my back, lugging our little bag full of snacks and water bottles, I watch him, waiting for the moment, just before he disappears around the corner, when he'll turn around and make eye contact. I wave him down signing WAIT FOR MOMMY! but he's already plopped down on the park bench and signs WAIT. As I get close, up he pops again, and I watch the back of his head bounce, jump, and dash along.

Cut to later. Ellis is picking up his fifteen-month-old brother. Again. He adores his brother, but sometimes his love is a bit too lavish. I kneel down, fully intending to affirm his love, but to talk with him about more appropriate ways to express it, while firmly prying his arms away from the baby, who is screaming his head off. Ellis drops to the ground, flailing and squeezing his eyes shut.

Four years ago, when we learned that our brand new baby was born profoundly deaf, we knew our experience as parents would be different. We got a kick out of being able to vacuum in the same room as a sleeping baby. We cheered at his vocabulary of ASL at such a young age. We stomped the floor to get his attention.

However, I feel like it's only been this year that I've really begun to get a glimpse at what it means for Ellis to be deaf, and deaf in our hearing family. I've started to see how he settles himself socially. Personally, I'm starting to see the particular ways I fall short as a parent. True, nobody is a perfect parent, but I'm speaking of the ways in which I struggle as a Hearing Parent of a Deaf Kid.

The primary aspect of this unique experience is communication. We are settling into the bilingual dance between spoken English and ASL. Two years ago Ellis got a CI. He's doing pretty well with it, his receptive language is stronger than expressive. I can talk to him without signing through the simple aspects of our routine and that works out fine. He doesn't like to wear it at home. We don't press him to, but, I will admit, I may or may not have bribed him with chocolate milk to wear it at home sometimes. He wears it at school or usually any other time when we're not home. He is most comfortable with ASL, and that is the language we use with him primarily, even if we are speaking, too. This is especially true in discipline situations, where I need to use whatever language we have to its fullest, and since ASL is his preferred language, that is what I use.

From the beginning, we've pursued our education in ASL vigorously. We've taken classes, lived in the dictionary, had Deaf Mentors. But we are far from native signers. We get by. We can communicate fairly effectively with our four-year-old: we can read books in ASL and talk to him about the world around us.

I have found lately, though, that my ASL is starting to fail my parenting needs. It's taken me awhile to figure out what the matter is, because I know the signs and how to use them, but somehow I'm failing to communicate. I think there is a Deaf presence that I don't have. I'm not really sure how to describe it. A way of using my body that transcends the actual signs, that enters into his space, meets it, communicates with it. Connection is a key part of my parenting philosophy and to be so defeated by the basic communication that I need to make it happen is beyond frustrating. It has deeply discouraged me in these past few months especially.

It's not all a total big Fail. We do get along, after all. We do connect. I give him as much physical presence as I can. I give him as much language as I can. And we are a happy family. But sometimes I look at my hearing friends with their hearing kids--parents and children who speak the same native language--and wonder at the ease of it all. To just talk, effortlessly.

He shuts his eyes. Bam. Communication stops. He glances away from me, focusing back to his play. Communication stops. Sure, he might pick up more than I think peripherally. But it is unnerving to have the eye contact lost. The conversation could just be small talk about his play, but it is lost mid-sentence. Is my signing that weak? Do I not have the persona to indicate that I'm talking to you? Ellis seems to think that I can only hear him if I'm looking at him. He screams my name while I am driving until I glance back giving him the visual acknowledgment that I hear him. (Dang! We need a mirror!) He also thinks that if I don't acknowledge him the split second he says my name that I must not hear him, so he repeats it at blood-curdling volumes, until I can turn to him. I'm rambling a little. This summer has been a roller-coaster. My nerves feel shot from his screaming my name, though it's getting a little better.

He's changing socially. We were at a birthday party with all hearing kids, kids he's known since infancy. Another guest, another little boy, ran up to Ellis, hi! what's your name? Ellis didn't know what he said. How much do I step in to intervene? Do I translate for E? Let it go and watch him slip into isolated play? Do I go through the conversation for the bazillionth time? oh, hi. His name is Ellis. He can't hear you, so we talk with our hands. can you say 'hi' like this? Some kids get into it. Some feel awkward and back away. Bless the little British kid at the park the other day who made fast friends with E despite his curious quality.

How do I balance it all? As a mother I want to protect him from all this. I want to make a world that fits him perfectly. I don't want to have to teach him how to negotiate through languages and worlds. I wish I had more to offer him. Yet at the same time, he's doing a pretty good job. Sometimes, I just have to stop and let go. Let him run ahead, trusting that he'll turn around. After all, I am not in control. The God who gave me Ellis also has Ellis perfectly in His arms.

Hearing2Yesterday we went down to the children's hospital (CHOP) again for Ellis's two year evaluation and mapping. Today marks two years since his activation of his cochlear implant. He wears a Cochlear Freedom on his right ear.

Ellis is interesting. I think we all expected him to really get into his implant, but he hasn't so much. He's not an auditorally-inclined person. I really wasn't sure what to expect at his appointments, because compared to some CI kids who have had implant(s) as long as he has, he might not be doing as much as they are. I will say, though, personally, we don't "need" him to be doing that, you know? He's bilingual. And he rocks ASL. So, for having a deaf child, we're doing pretty well in the language-as-a-whole category. I don't feel defeated or discouraged because he's not indistinguishable from a hearing child.

We met with his former speech therapist, who has switched to part-time following the advent of her cute baby. It was so great to see her again!! Ellis was excited to play with Rebecca again. He often asks for her if he sees that we're heading towards center city. She was mostly in eval. mode. Receptively he's doing really great. Right on target. Expressively, though, well, put it this way: if he doesn't sign, too, I have no idea what he's saying. She's hoping to squeeze him in for a few sessions to help him with articulation.

Hearing1 Hearing3

After lunch, we saw Ellis's audiologist again. Ellis has had mixed experience in the hearing booth, so I'm usually a little nervous. He's never been a fan of the conditioned play (where they hold a block to their ear and then put it in the bucket when they hear something). So this time we tried to do it like a big boy, just raise your hand if you hear something. He loved that! The audiologist got a pretty good idea of what he's hearing with his implant. We talked some and he fiddled with the programming on the implant.

I've been nervous, because Ellis doesn't always want to wear his CI, which is fine, mostly. On the one hand, if he's been listening for awhile and he's tired, that's fine. But to just kind of not wear it, like not wanting to wear shoes, I'm a little more reticent, because consistent stimulation will provide him with the most benefit. So we do a lot of off and on and off and on. He's cool at school, but not so much at home, etc. I wasn't sure what they would say when we went in to his evaluation.

I must say, that we've got to be the luckiest bi-bi family in this country. Seriously, I love our hospital! I love our peeps!! I was explaining to the audiologist that Ellis is making progress, but he's no CI wunderkind or anything. But the audiologist was so encouraging: Ellis is the measure of his own success, and he's doing great! In other words, don't compare him to other kids, he's learning in his own way, in his own time, and that's great success for him. He's definitely getting great auditory benefit from the CI. I'm so happy that our both Ellis's school and his team of hearing professionals see Ellis as a whole Deaf person with a variety of skills, talents, and successes.

Hearing4

I've gotten some fun movies of Ellis recently. These are taken roughly around eighteen moths post CI activation.

In the first, Ellis is fingerspelling the title to his bedtime story--and saying the letters as best he can (though he's not wearing his CI in this one, because he's going to bed). He loves to spell out the title of the books before we read them. Bedtime story is 98% of the time in ASL, because his CI is off for bed by that point. Every once in awhile, he wants it on. Anyway, he's just picked up the letters' spoken names, it's not something we've been working on in particular, though I'm sure they've done it some in school. We usually do say the letter when we sign it. Here is Ellis signing "A Pocket for Corduroy."

Ellis's favorite thing right now is counting. Here he is counting his cars with Daddy. I was trying to take the video surreptitiously, so sorry if it's not the clearest.

And, of course, what's a blog without a little politics? Hey, E, who's the new president?

train to the city on a snow day Yesterday was such a dreary day! We woke up to a blanket of snow that eventually got soaked with rain, becoming a wretched blanket of slush. Since our weather was somewhere between snow and ice, I took Ellis to his audiology appointment via regional rail instead of driving. He was absolutely thrilled to be able to ride the train and said "choo! choo!" the whole way there. I suppose I could've rescheduled the appointment, but I already had rescheduled it a couple of times, for various reasons, so we braved all the yucky slush.

At Ellis's last few audiology appointments, he has had a really hard time with the hearing booth. So at our previous one, I had made sure he had a good night's sleep, was well-rested, well-fed, well-connected, and by all accounts, it should've been fine, but it didn't go well at all. He was afraid the hearing booth. And was very unresponsive, though I, his audiologist, and his speech therapist (both of whom he really likes), knew that he could hear stuff. Needless to say, I was really nervous about yesterday's appointment. Especially since I hadn't had the opportunity to make sure all his environmental considerations were as best they could be. And then we slogged through the snow on top of it all (though, I don't he minded that part). But the appointment went great!

His audiologist did some tweaking before he got into the hearing booth, and I think that helped him warm up a bit. And his speech therapist (who he loves) helped out some, too. I think that helped him feel more comfortable, especially since at that point Marlowe decided not to take the nap he needed, and I had to leave the hearing booth.

I'm always amazed at how much he can hear with the CI. He was responding to sounds so quiet that I could barely hear them. But, as I keep reminding people, it's not all about the mechanics of sound, it's also how sound is mediated to the brain. There's "hearing" (the audiological act) and there's also "hearing" (the creative act).

A couple of months ago I attended a presentation that CHOP did about bi-lateral CI's. This is not something we're interested in right now, but I wanted to see what they had to say. One of the benefits that struck me was that of binaurilty, the way the ears interact together to bring sound to the brain. I wondered if wearing a hearing aid in his left ear could help Ellis in that respect, and also take advantage of sound stimulation on that side.

So the audiologist took an audiogram of Ellis's left side. E did great, and he got a really good picture of what was going there. His thresholds were at about 110-125 db (getting progressively worse as the frequencies were higher), that is, profound hearing loss. A hearing aid would only bring him into the range of moderate hearing loss, and probably wouldn't benefit him all that much, except for vague sound stimulation. It would not help to create a situation of binaurality; he would need a second implant for that. And like I said, we're not going down that path right now. So it was an interesting discussion, and I'm glad we had it.

In other CI news, Ellis is FINALLY wearing the babyworn snugfit on his behind-the-ear processor. He's always had a BTE, and would never wear the snugfit. We've had to tape it to his head everyday! (thankfully, he didn't have sensitive skin) But I think we may be entering a new phase of ease. (Though I'm still keeping the tape handy.)

...for every Phillies Tshirt I saw today...

Yay Phillies! I must admit, though, it didn't even occur to me to watch the game last night. I think I may have heard that it was going to be played on Wednesday, but it didn't really compute. I was too busy watching Gilmore Girls. I'm up to midway through Season 5. But it is fun to be living in the winning city and seeing everybody be so excited. So. Yay Phillies!!

We went down to CHOP. In addition to our regularly scheduled speech therapy, E had a CI mapping. The audiologist wants to see him a little bit more frequently, because, well, Ellis just doesn't do that great with him. The audiologist has yet to get a really good idea of what's going on in Ellis's head. Thank goodness the speech therapist works in the same office. We're all pretty confident that he's hearing fine, but E just doesn't really do hearing booth, shall we say. But then he had a very, very good speech therapy session. In fact, he knew he was doing well, because he kept beaming and we kept cheering. So he marches to his own beat. Full of surprises that kiddo.

And tomorrow is Costume and Candy Day (otherwise known as Halloween, but we're really just in it for the extra dressups and sugar rush). So a costume must be had. And it's the Rule that we make our costume. And since E doesn't really know what's up yet, we still get to choose his costume. Chris had the great idea of Airplane. arms as wings, a propeller attached to a Tshirt. Hat. Glasses. Voila. The key is Simple this year. Ellis painted the wings this afternoon, and I've been doing the rest this evening. I can't wait for him to try it on. They have a little parade at school, so I wanted it super simple, since the poor teachers are going to get all their kids into their costumes. I don't want to give it all away. So I'll probably download the gagillion number of pics on my camera tomorrow and post some already.

Hubby blogs----

Wow. What a week. Actually, it's been a week and a half. About the middle of last week, I was looking at a deadline. I knew I had to finish this particular project by the end of the week or so, though I did think I would have the weekend. But for the life of me, I could not get to that project. Whenever I tried, I would be interrupted by some new disaster at my other job. In fact, they owned me for about three days. So by the end of the week I turned to finish the other project.

I knew it would be a programming marathon, but I was determined to make it happen. After almost forty-eight hours without sleep, I had what I had. But I still was not where I needed to be, and my employer was -not- happy with my progress. I swear, thought I would lose my job.

So I worked through Sat. and Sun (I NEVER work on Sundays). And on Monday I was feeling comfortable that I could be done in reasonable time.

Then my other job called up. Disaster. Our client was -very- unhappy. Things had gone completely wrong over the weekend. And though it -really- wasn't our fault, we naturally had to share the blame. So it fell to me on Monday to be the one to offer a solution that would save not only the project but our relationship with the client.

In a moment of complete psychotic disassociation from reality I suggested it might be possible to put together a complete social networking environment in Drupal, within 24 hrs. We already had a template, which could easily be tweaked for the purpose. And once again, another forty-eight hour work marathon later, I was in the same situation as before: desperately trying to put something together in a pinch, hoping it would be good enough to buy more time to keep desperately trying to put something together in a pinch that would buy still more time. Only now I was doing it on two fronts, for two clients.

I don't have to tell you that as I sit here I feel like I've lived five years in two weeks. I'm just now remembering that I have a family, and I'm trying not to think about everything I have left to do. I'm trying to think of what to say to my wife to start getting to know her again. And I'm not sure that Ellis remembers who I am.

I did find out from talking to her today that Ellis had a rough speech therapy session, though not in the usual mode of rough. We've been struggling to keep him engaged during the sessions. The therapist thinks he should be making more progress than he is. So she asked a colleague to run this week's session, while she watched.

Second opinions can be just the thing for getting over a hump. Unfortunately, it seems that one of the reasons we are not seeing the progress we should may be that E has processing difficulties. He's struggling in ways he shouldn't, even given the challenges of being deaf. And maybe he is showing evidence of this processing problem in ASL, too. Only we would never have known it, because we could never get anyone to give us a proper ASL evaluation as part of our IEP.

So yea, we've pretty much had a normal week. What's new with you?

Consternated We spent the afternoon at CHOP today. Ellis had his one year evaluation and mapping for his cochlear implant. The past few times he's been in the hearing booth, he's HATED it, like cried and crawled all over me. Today he was much better, and even cooperated a teeny tiny bit. But not enough to get a really good audiogram. It was progress, though. His audiologist wasn't too worried, though. He worked with him in the CI tuning room and was able to fine-tune the program a bit more. He's been using the ADRO (Adaptive Dynamic Range Optimization) program comfortably for several months now, and we're sticking with it.

Ellis then had the official speech evaluation with Awesome Therapist who we see every week. E was really tired, though. She was able to get him through the questions pretty quickly, and combined with what she knows from weekly therapy, evaluated him at approximately 18-24 mos in terms of age level auditory-verbal language skills. He's 37 mo, but has only had auditory access for 12 mos, so not bad. He's not a CI wunderkind, but he's doing pretty good. And we're happy with that and proud of all he's done. I do think his therapist/audiologist/and us! would all like to see him a bit better, because we know he CAN; he has the auditory access and the intellectual capability. The question is, does he want to? haha! We think that he'll let it all simmer for awhile and then one day when we think he'll never do it, he'll come out with it like he's been doing it all his life. That's sort of his learning pattern. Not like anyone else I know or anything...*cough* his father *cough*.

I was really proud of E. That was a long day of listening, and he worked hard! He fell asleep in the car almost instantly. Yes, He Who Does Not Nap. That's how tired he was, AND he stayed asleep when Daddy carried him up, lay him on the couch, and washed his face. poor boy.

There's a lot of work ahead of us, but at the same time, if you take a step back and see what he IS doing, none of it he could quite so easily or at all without his implant. That's kind of cool.

CI After settling into his CI for quite some time, Ellis has been taking it off and pulling it apart recently. Mostly, it seems, because he's bored and/or a bit ornery (as he is with a lot of things--understandably getting used to a new baby and getting through some developmental angst [my new term for "disequilibrium"]). All that pulling apart did a number on the coil (the wire that goes from teh external processor to his head and that holds the magnet), and wouldn't ya know, we are well into the long weekend with Cochlear's office closed when I finally figure out that it was the coil and not battery issues. (So a few days of trying to figure out what was wrong, combined with crazy schedules and just trying to keep track of the CI since E kept throwing it around. *gah*)

So first thing Monday morning, I called for a new coil, and it didn't arrive until this afternoon. So it's been about 5 or 6 days with no CI. (Just don't even bring up the spare right now.) I was frustrated, because that's a long time to go when you're trying to get into the CI groove, but hey, we sign, so no language was lost in the process.

In fact, it was kind of an interesting week in terms of language development. We've really been encouraging Ellis to use more words together to say what he means, speaking and signing. In the past day or so, Ellis started using ASL sentences that were as long as 6 or more words to tell me what was going on. One of my favorites was: GRANDDAD BATH UPSTAIRS SHOWER (complete with sound effect) WET *pause* HAIRCUT ALL-DONE. He periodically reminds us that his haircut is all done. His last haircut was around two months ago. I guess the thought of water squirting on the head reminded him of his haircut.

I feel like Ellis made a jump in expressive language this weekend. I don't know if it was being reduced to one language, or if it was just coincidental (he was gearing up for a developmental spurt--I can always tell from the insomnia).

When the new coil came, I was worried that he would totally reject wearing the CI. I asked him if he wanted to wear it, and he said yes, and tried to put it on himself. But I forgot to turn it down from when he had worn it last on its highest setting. It's been over 5 days since he heard any sound, so when I put it on, he shrieked and cried a little. I grabbed the coil off his head as fast as I could. I felt SO BAD, I just about died. We waited awhile, and I asked him again, and he said yea, so we did it nice and slow. He spent the rest of the evening constantly vocalizing. I think he may have liked having it back.

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