There are many cute little clips out there of kids dancing to music hearing it with their cochlear implants. I always feel like posting the videos the of E dancing when he isn't wearing any hearing devices. It looks the same. He feels the vibration through our wood floors. I guess I have an evil streak. heehee.

Seriously, though, I do think the CI has made a difference in his enjoyment of some things. That's okay. He's always enjoyed blowing in the harmonica, but recently he's really gotten into it. He knows what he's hearing and likes it. And that's kind of fun.

Posted by at 06:55 AM | Permalink | Comments (2) | TrackBacks (0)

Ellis is a big boy now. We held his IEP meeting today in our home and drafted up a thorough Individualized Education Plan for when he turns three in a month and a half (eek!). Thankfully, we squeezed this in before baby.

The meeting lasted two and a half hours, and I'm satisfied with what we came up with. One of our biggest concerns was that the IEP take into consideration Ellis as a whole deaf person, not just a cochlear implant. The biggest implication for this would be where he goes to school (in our case, he will stay at PSD). But the smaller implications are in the details. If there are speech production goals, are there also ASL goals, for instance? The goals need to clearly reflect a bilingual approach and take into consideration growth and development in two languages, two modalities, with adequate support, instruction, and evaluation for both.

So we took a long time to hash through all the tiny details of both the evaluation report and the IEP draft.

The two women from the county working with us are really terrific. I imagine, on a personal level, we might not agree on everything about deaf education choices, but they respect our desires and philosophy of education and have gone the extra mile to help us get what we feel is best for our family. Ellis's Deaf teacher from the school also came (we invited her) and was great help in articulating ASL goals.

I'm really relieved that E will get to stay at PSD next year for the beginning of preschool. He'll go five days a week, which I think is crazy for 3 yos. But I'm not going to send him all day, which I think is even CRAZIER for 3yos. The program runs from 8.30 to 2.45! I'm bringing him home at noon, because he doesn't need to stay at school for a nap (LOL!) and a snack, you know? The instruction time is basically done by noon anyway.

It's kind of amazing to think that the first IEP hurdle is behind us. I kind of have to laugh at myself, too, because a few months ago, I was so obsessive about the big, scary IEP. But now I'm so absorbed with the immanent end to this pregnancy, that I kept forgetting that we had the meeting scheduled for this afternoon and almost went to get my haircut.

So now we're squared away for the upcoming school year. So far I much prefer how the IEP is set up in our county than the IFSP (the 0-3yo plan that we've been on since we started services).

Posted by at 11:26 PM | Permalink | Comments (8) | TrackBacks (0)

We've been having a lot of spring fun at school lately.

Almost two weeks ago, the early childhood center had their spring fling, which included presentations by all the classes. Ellis's class (the youngest) did a little play/presentation of The Very Hungry Caterpillar, which they've been studying this unit. E and his best buddy A and Cute Little Girl were the "narrators" with some help from the power point on the big screen behind them. The other kids took turns showing big posters of fruit. E and A were especially cute. They were like a standup comedy routine, totally playing off of eachother and interacting with the powerpoint. They had everybody cracking up! I wanted to make a little movie of it with my clips...there's still time. My boy's first play!!

After the presentation, the kids played outside for a bit in the warm spring sun, and then we had a little pizza lunch in the kids' classroom. E was such a little host to me, I was really touched. He went up and got a plate from the teacher who was serving and chose his little pieces of fruits and veggies (he doesn't like pizza). When the teacher instructed him to go sit down at the table, he said NO, picked up another plate and signed Mommy, and made sure I had exactly what he had and then we sat down together. It was so sweet. *melt*

Saturday was Community Day at PSD, which basically translates for our family into Inflatable Paradise. Ellis went down these slides for about two hours straight. As soon as his feet touched the ground he was saying/signing "MORE", and off to stand in line again.

The Grand Finale for the class's unit on The Very Hungry Caterpillar was a trip to the Academy of Natural Science. One of the perks of being a stay-at-home-mom: getting to go with my kid on his first field trip! And let me tell you, there's nothing cuter than a little school bus full of car seats. So how does a field trip of 2-3 year olds work? One adult per child. There were a couple of other moms/grandmas and some extra staff, and I was impressed with how smoothly everything went.

We had some time to look at the exhibits, which the kids loved.

Then it was our turn for the Butterfly Exhibit, which is a room like a greenhouse, humid and full of plants. Butterflies and moths were flying freely everywhere and sitting on the plant life. It was really cool. I think everyone was entranced from the littlest kids to all the adults.

Posted by at 08:53 AM | Permalink | Comments (3) | TrackBacks (0)

... you continually have to stop yourself from asking all the old people about their hearing aids.

(And you wonder if they know they could get their earmolds in sparkles or fun colors. Just sayin.)

Posted by at 10:18 PM | Permalink | Comments (6) | TrackBacks (0)

One of the things that needs to happen before baby is getting Ellis's IEP squared away, which is scheduled for May 2.

So far, the IEP is turning out to be a much saner arrangement than E's IFSP (the 0-3 program). It's just us and two intelligent people who are easy to work with and are specialized in deaf education. With the IFSP, there's a weird arrangement of service coordinator (who is basically a paper pusher with no specialized knowledge), a representative from a contracting agency, a crazy array of teachers providing a variety of specialized services. I find it a little annoying.

Yesterday E's new speech teacher was accompanied to our home by the person from our county's intermediate unit who supervises all the deaf ed stuff. She's really great. They both are. I imagine we probably differ a little on a personal level in terms of deaf educational philosophy, but they are really supportive of us and have been extremely helpful so far. I knew this was our official Evaluation Sessions for the IEP, but I wasn't sure exactly how they would approach it. Essentially, E had a normal "speech therapy" session, they got some information from us, and now we can check that step off our list.

I know they are qualified to evaluate him from an entire language perspective, but most of yesterday's evaluation was focused on listening and speaking with an acknowledgement of his skills in ASL. I wonder if it would also be appropriate to evaluate from ASL only point of view, too. I think I will have to ask his Deaf teacher about that. Though I'm not sure how their evaluative rubrics would accommodate that, it seems that if we're being truly consistent with our educational goals for him that this would need to take place, too. Hmm. I guess I'm off to write some more emails.

Posted by at 09:19 AM | Permalink | Comments (2) | TrackBacks (0)

Sometimes when I turn on something for E to watch, I just hit the mute button. It's one of the perks of having a deaf kid. I usually don't hit mute when he has his CI on, but today I wasn't thinking and when annoying children's TV music came on, I hit mute out of instinct. Purely self-preservation. He came up to me a few minutes later and signed MUSIC HEAR. He's recently been showing interest in having the volume on, and this was the first time he's asked for it.

Later he was watching a little bit of Finding Nemo and you know the part where Nemo is in the tank at the dentist's office and the other fish are having an induction ceremony for him. As he approaches the group, the other fish chant "aaah, ooh. aah, eee, ah. Oh, oh, oh" or something like that. Ellis was trying to imitate their little chant.

I thought this was kind of cool, because the sound he's already getting from the CI is not a natural sound plus the sound from the TV is not a natural sound, so it's like natural sound twice removed, and it's sound that's not in person. I know when I've been learning other languages, I always have more difficulty understanding them on TV rather than spoken in person.

Overall, E is continuing to do much, much better wearing his CI. It's kind of a relief not to have to do the little dance several times a day. In fact, he actually offered his ear to me the other day after he actually tried to put it on himself.

Because he's been better about wearing it and thus having the consistent exposure, it allows the freedom to have some down time, too. On a Saturday we might have deaf day, which is good for us, too. We sign more and visually communicate more as a whole family and that feels good. He seems to be enjoying the listening and talking, but he's not a chatterbox kid. If he doesn't have something to say, he doesn't say it, and that's his personality and totally fine by me.

Posted by at 10:03 PM | Permalink | Comments (3) | TrackBacks (0)

Yet another rare appearance by Dad!

Ever see Das Boot, or Crimson Tide? The Hunt for Red October doesn't count, because it doesn't really convey the reality of daily life on a submarine. It's excruciatingly boring, characterized by much olfactory discomfort, governed by very strict rules of economy, and only occasionally interrupted by periods of spine crushing intensity.

Which is to say that after a nice vacation from being hot under the collar about Deaf stuff I'm back in the game. Jeannette cajoled me into attending a CI parent forum at CHOP, yesterday. I thought it would be nice to show up to something with her, for once, and I'm glad I did.*

Last year's forum was dominated by the Orals, but this year's was different. There was only one or two of 'them' to three of 'us' on the panel. And I know there were some quality people in the audience besides, so that's at least a pretty good balance-- even slightly in our favor.

There was something that bothered me, though. We call ourselves bilingual/bicultural. That means that we are committed to bringing Ellis up to 'know he is deaf.' That's why ASL remains so important to us.

But I'm worried when I hear other bi/bi families say that their child is backing off of ASL now that they are implanted. And something doesn't feel right when they say things like this:

"We want to hold on to ASL because we want our child to be able to have friends that are deaf."

"We think it's important to recognize that even though our child can hear some things, she still is deaf, and there will be times when she isn't wearing the CI when we still need to communicate."

On the surface, comments like these are right on. They indicate that the family is not the sort who fears diversity. They aren't afraid of the challenge of learning a completely different way of communicating. They accept their child's deafness, and don't think of it as a problem to be fixed.

So what's wrong with this? Well, this is the way I put it to Jeannette after the forum. When a child is implanted, the parents immediately get to work teaching the child to listen and speak. It isn't a natural skill, so it has to be practiced. All the time. Parents are under enormous pressure to KEEP THAT CI ON. All the time. Parents at these forums talk about their strategies for doing this, and talk about whether or not it's 'OK' to let the kid have down time without the device. They talk about how sometimes their child chooses to sign something, even though they know how to say it. So they refuse to acknowledge the attempt at communication unless it's verbalized.

There is a tension, because on the one hand, he does need to wear it a lot to get the benefit from it, and he does need to be encouraged to use his new skill of speaking because, like any skill, it takes practice.

But on the other hand, why does he have to have it on all the time? Is it only OK to 'let' him take it off when he's exhausted after a day of listening?

There just seems to be an imbalance here. We talk about 'letting' him take it off. Why should having it on be the default, while having it off is the exception? Why are we not as creative and proactive about getting him to practice his signing as we are about getting him to speak?

Jeannette already mentioned that Ellis took off his CI for a couple of hours the other day, because he wanted to enjoy wearing his hat without worrying about the magnet. Fine. I have no problem with him taking it off for a midday break or after speech therapy. Our whole evening routine, from bath to bed (including story time) is done sans CI. Listening is hard work, and he gets tired!

I think that what bothers me is that the arguments given for keeping ASL around after implantation almost always are exlusively pragmatic. It's something families felt forced into initially, because it was the only or best option before their kid was implanted. And they continue to think that it's a good idea to 'have' sign, but when the implant comes along they fully intend to make speech the default mode. They want their child to be able to switch from the hearing world into the deaf world, not the other way around. I think that's an important difference.

So for us ASL was not only a pragmatic choice but an ethical one. We want him to be Deaf, and we want sign to be his language. We also want him to have every advantage as he navigates the majority hearing culture. And it becomes really difficult to figure out how to manage this in daily language interactions with our 2 1/2 yo. It's important to us that he continues to grow in sign, to use proper ASL grammar, and to give to it all the seriousness we would any other language. But at the same time, give him all the benefit and training to use his CI to the best of his ability.

I really have no idea what this looks like. I probably don't have a clue what I'm talking about. Just so many thoughts in my head at the moment.

* To his credit, hubby works 60+ hours a week. I end up doing things alone, because he's working so hard for us. Didn't want him to give you the wrong idea. ;-)

Posted by at 10:04 PM | Permalink | Comments (9) | TrackBacks (0)

E's been doing really well about wearing the CI. Much better. He's worn it without taking it off all day almost every day for the past couple of weeks. (Except for the bit yesterday when he wouldn't wear his hat and CI at the same time--and the hat stayed, of course, it's all about fashion). It's nice not to have to search the house multiple times a day to find the stashed CI. Overall in life, E seems a bit more settled. I think coming out of a phase of disequilibrium.

I can see improvement in his speech/listening, too, no doubt thanks to better CI wearing habits. I've realized that I have had to come to peace with speech therapy etc. We were so conflicted about the CI and so protective of his signing, that it's taken us a long time to really accept speech therapy on a certain emotional level. E continues to do well with ASL, and I feel like I can relax a little about it. He's in an environment where his ASL will be nurtured and will continue to grow, and I don't need to be so tense about every little language choice. It also helps me to encourage him more in his speech/listening, since he has the tools to do well, in terms of both equipment and cognitive skills.

Anyway, so a couple of my favorites that are new-ish:

* When we're driving around (which we do a lot) I usually point out the traffic lights and holler from the front "Red! Stop" "wait, wait, wait" "green! go!" Sometimes I sign, too, if it's convenient (and esp if the CI got hurled across the car). Lately we've been hearing him chime in from the back, too. "ee! op!" "bee, bee" (he still says "bee" for "wait) and then a gasp of excitement when it changes (every time! I love this kid!) and "EEE! OOH!" He's taken to enacting this out with his cars, too. Very cute.

* and finally I am referred to as "mah-ee" instead of "bee". Woohoo!! Daddy has been "yayee" for a long time. But I finally got a "ma-ee." He labels us and what belongs to us all the time. Like going around the table: Ellis's plate (he says like a cross between "el" or "uh" for his name), Yayee, Ma-ee's plate, etc. He's really internalized Ma-ee, too, because the other night he came stumbling into our room and when I picked him up, he said, half-asleep "ma-ee" and signed "mommy". *melt*

* about a month ago he nailed "sh" and "s", too. yay! that makes all 6 ling sounds that he says.

I probably should add that we have a new speech therapist from the county who will be coming to the house, in addition to Totally Awesome Fabulous Speech Therapist. The other therapist was not going to work for us. She wasn't a bad person or anything. And E liked her just fine. But I felt like the sessions were anemic; they could've been so much more. I couldn't see her plan or trajectory and kept feeling like I wanted to take over. It wasn't worth the distance we were traveling. Thankfully, the go-to person for deaf EI/Preschool in our county pulled some strings for me to get this other person, whose has plenty of CI experience and is current with resources. I feel like I can ask a question and get good response--I have confidence that she knows the territory. And she signs. I like her, and she'll work for us. And she'll be coming to the house. SO NICE!

Posted by at 10:37 PM | Permalink | Comments (4) | TrackBacks (0)

Just when you think you have two-year-old figured out, he goes wonky on you. Morphs into a new human. There's a hundred little ways he's growing and changing. He wants to do it himself--he gets the juice out the fridge, hands me the bottle to pour for him, and puts it back. (I'm dreading the day when he decided he can pour it, too.) He comes up with more games to play. He obsesses over his cars. He hangs out in Blue Ikea Bags.

And then after two years of a consistent bedtime routine that starts with a bath, which has always loved, he decides that he hates baths. I mean loathes them. Like the water is going to make him melt. And then two nights ago, baths are okay again. We never stopped giving him a bath, because we can't think outside the box of the Bedtime Routine. We all depend on it, so even if he just got his toes wet, we still could check that off the Routine Checklist.

And the CI? um, he's never been thrilled with wearing it, but was getting into a new groove. But then, he just decided he was over it. And now it's cool again.

Wearing shoes? well, he can be persuaded to wear yellow, rubber boots.

Because I'm the mom, I see the long-term benefits of having a bath, wearing the CI, wearing shoes, so I have to find a way to speak his language. And he will be persuaded eventually. For a 2yo life is play, a game. That's how he learns. I can't compromise on the things that need doing, but I can alter how I approach him about doing them.

This is a typical CI-putting-on session:
Me: "It's time to put on your CI." (signing)
E: shakes head, signs "no", covers his ear.
Me: "Should Mommy wear it?"
E: laughs, shakes head no
Me: "Should Monkey [or Bear or Cow or Doll or Lightening McQueen] wear it?"
E: laughs, shakes head no
Me: "Whose CI is it?"
E: signs MINE, laughing
Me: "Where does it go? On your toes?"
E: laughs, no
Me: "On your thumb?"
E: laughs, no
Me: "On your nose?"
E: laughs, no
Me: "Where?"
E: laughing, offers his right ear, where I calmly attach it to his head

Repeat scenario for dressing, diaper changing, baths, eating. At the end of the day we have a cared for toddler and a mom expert in diplomacy, seriously, the UN should hire me. Sometimes he needs more of this others. Sometimes, he's just like OK! What can I say? Toddlers like routines. Even if it is a play routine.

I only had to do the CI Routine 4 times yesterday. Beats 4 times in an hour.

Posted by at 08:37 AM | Permalink | Comments (11) | TrackBacks (0)

It's been six months since Ellis's CI activation. It was actually 6 mos exactly a week ago, but I've been wanting to sit down and write a long, eloquent post, but it's just not going to happen, at least eloquence isn't. So I'll pound out some details just to keep them around.

Last Thurs in his speech therapy session at CHOP, Totally Awesome Therapist declared that Ellis was ready to graduate from Learning to Listen Sounds (like "choo-choo" for train) to actual words. So we're cycling back through a few consonants adding words. So far (in no particular order) we've done B, M, P, H, N, and W (with a variety of vowel combinations), and are now back on B for words.

He has good auditory discrimination (esp pitch and rhythm) and short-term auditory memory. He imitates speech ALL the time.

He has about 40 words expressively and receptively (speech that is, he's hundreds in sign, of course--we lost count over a year ago). It's funny to go through all these stages again, because I feel like we were just here...just in ASL.

Words he says (well, they aren't perfect, but the meaning is there). I'm going to record how he says them, because it's so cute (sorry if this is crazy pedantic, it's partly for my record, too):

stop (a silent "p", sometimes "op")
help (silent "hp")
ow
whee (as in going down a slide; this a Learning to Listen [LTL] sound)
yay (as in yippee!)
eww (as in yucky, dirty)
Mmm (as in yummy/eating; LTL)
pop (says "pop" but it's silent/whispered)
sssh (as in sleep; LTL. Actually he makes this by sort of blowing through his teeth, same with the "s" sound)
no (oh)
yes (yea)
more (mo)
hi (silent "h")
bye
open (oh)
go (oh)
wash (ba; can sometimes get a "wa" out of him, but he's hanging onto that B)
water (ba)
wet (ba; he signs with these, so I know which one it is)
jump (silent "p")
up
Daddy (aa-ee)
Poppy (my FIL, silent "pop")
baby (beebee)
eyes (long i sound)
nose (oh)
all done (ah-ba)
dirty (uh-ee)
hot (silent "ha")
juice (ooooh)
ball (ba)
beepbeep (as in car; LTL)
moo (as in cow; LTL. says "ooooh")
meow (as in cat; LTL. says "ow")
woofwoof (as in dog; LTL. says "woo, woo")
knock-knock (as in door; LTL. says "bah, bah")
choo-choo (as in train; LTL. says "ooo-ooooo")
aaah (as in airplane; LTL)
quack-quack (as in duck; LTL. says "ba, ba")
shoes (oooh)
wait (bee)
please (eee)
wow (bow)
I swear he said "ah-oo" for thank-you the other day, too.

He might not always get the consonant/vowels completely right, but the inflection is usually really close. I'm happy that he's getting the hang of this talking thing and seems to enjoy it. When his CI is on, I see him incorporating talking into his play independent of us, and that's really where a child's learning and internalizing takes place. It's sweet to hear his little voice saying "oo-ooo" over his wooden train track.

Thanks to his totally awesome bilingual classroom, though, he is still progressing marvelously in his signing skills. It's hard for me to sit here and make a list of what he's doing in sign, because by now it's such a natural part of our life. This is where we have conversations.

He reads books in ASL now, simple stories, like his favorite, Five Little Monkeys Jumping on the Bed (or any of the sequels). He doesn't use classifiers perfectly or anything (even I don't! top on my list of ASL Thing I Need to Finetune), but he's got the basic gist. He uses more descriptive signs all the time, like colors, feelings, fast/slow. One thing that I think is really cute is that in all the pictures he points out the little kid as him, an older male as Daddy, and an older female as Mommy. I think I make a nice Mommy monkey. :-)

He's still in love with his letters. He's nailed a few more handshapes (I and J are big accomplishments). He's SO cute the way he stops, makes the I, and carefully signs "noodle". He's only got one handshape left to grow into, W. He still makes a 4 instead.

And, get this!, he recognizes his printed name!! Can you believe it?! They're doing this at school, recognizing their own and their classmates printed names and fingerspelling them. We were at a parent-teacher meeting, and one teacher showed us this and held up some random kid's name (only letters, no pictures), and E glanced up and did her name sign. We were so surprised! haha!

We have our first meeting to transition him to an IEP in a couple of weeks. He will be turning 3 in June. I'm really not looking forward to this. If you have any advice about making IEPs say what you want them to say, please let me know. I have a couple of books I'm looking through, so that I'll at least know what we're legally entitled to.

So that's Ellis News, the Quick and Dry Edition. I wish I had a fun movie for you, but life is so fleeting around an super, speedy-fast 2.5 yo.

Posted by at 10:42 PM | Permalink | Comments (12) | TrackBacks (0)

Be sure that your volume is on!!

This is SO FANTASTIC!! For more about the commercial see msnbc.com.

Posted by at 06:15 PM | Permalink | Comments (11) | TrackBacks (0)

We had our first meeting today with Ellis's "new speech therapist." I put that in quotes, because I'm not sure if we'll keep her. She drove me crazy. I'll give her a few sessions to find a groove, but if it ain't groovin' I'm ditching her.

We wanted to add another therapy session per week, in addition to the one we're getting from Totally Awesome Speech Therapist at CHOP. I was optimistic, because speech therapy has been rockin' so far. Basically, as I described to someone earlier, Awesome Speech Therapist empowered our whole family from day one. "New Speech Therapist" made me cry in the car.

(It really humbled me, too. I can see how many wonderful situations God has put in our path, situations that we just sort of "accidently" stumbled into. When I glimpse into how worse it could be, I am so thankful.)

I also feel confirmed in our desire to stick close to the School for the Deaf. It is a much different place than a Classroom for the Hearing Impaired. *gag* The Deaf School values my son differently, and after today, I wanted to gather myself around Ellis and run from that place, protecting him from awful vibes. Maybe my pregnancy hormones are overreacting. He had fun playing with all the toys, and I doubt he felt any different. I'm the one who felt awkward, and I found myself signing to him while we there, because it was the "safe" language.

"New Speech Therapist" didn't really listen to me when I tried to explain where E is in his CI development. I realize that this was just the first time, but you know, she didn't do a whole lot to get to know E, where he is with his CI, how his signing fits in, his personality, or even our educational goals for him. She involved me minimally, and Awesome Therapist is in constant dialogue with me, like we're real partners. I'm not stupid, you know. Anyway, I was pretty pissed off when we left. And I cried in the car.

At least we got to stop at IKEA on our way home. Nothing like a romp around Swedish paradise to soothe rumpled spirits.

Posted by at 11:55 PM | Permalink | Comments (11) | TrackBacks (0)

It's probably about time to do another update on how fantastic Ellis is *grin*. I was kind of on hiatus from all deaf blogging for a little while. The comments were starting to get too intense for me, which, to some extent, I allow to happen merely by posting on the world wide web. whatever. Lots of fun things to write about today.

On the CI front, Ellis is making excellent progress. He's just over three months since activation. We still don't have speech therapy with our county straightened out (my current pain in the neck), so we still go to CHOP (the hospital), which is cool, because I heart our speech therapist. And I will probably continue with her as long as possible, even if the stupid county sorts itself out.*

So, to make this totally pedantic. Words (or rather phonemes, in most cases) Ellis says consistently with meaning:
Aaah (for airplane),
Ooo (for "choo"/train),
bye-bye,
Oh (for the letter O, "open", "no", "go", and "home"),
Eee (for the letter "E" and "please),
Mmm (for "more"--and usually nestled in a variety of vowel combinations)
And he is saying "p" very well in the past few days, which is great. It's kind of hard, its being a silent plosive and all.
Lately he's also blowing silently for "s" and "sh". It's in there somewhere.
"B"/'buh' is still sort of default phoneme for whatever word he happens to be trying to say.

He doesn't really babble. They say the newly activated CI kids will go through a babbling process like babies do. But he doesn't really. He's trying to say real things. When he's playing and I'm narrating his world, he tries to copy what we're saying, which we were doing (still do) in sign, as well. Like if I say, "do you want some juice?" he'll say "Oooo" for "juice". And he incorporates his few words/phonemes into his play, saying 'bye-bye' to his toy car, making things fly "aaah", and begging to ride the train, "Ooooo".

The other day, I was sitting behind him, and I said "let's put on your shoes!" and he turned around and said "Ooo" and signed "train"--making the connection between the "ooo" sound in "shoe" and "choo". He's responding to sounds/his name pretty consistently, too. He sometimes will even come if I call from another room. And he will respond to "invisible" sounds, that have no immediate visual connection, like a noisy truck outside a block away. I'm so glad that we have sign, because I can tell him what he's hearing in a language he already understands. I can explain by speaking, too, but it's not going to have the same meaning this early in the auditory game.

The other cool thing is that he's making the separation between English and ASL. He either says it OR he signs it. He doesn't really do both, at least not after he's solidly got the word in his mouth. Sometimes he says it and then will sign it, but for the most part he keeps it separate. I think this is really cool, because it is classic bilingual skills.

The CI aside, though, it's fun to see him develop so much in his language skills. For instance, he is currently obsessed with the alphabet. Actually obsessed is understatement. He practically signs letters in his sleep!! Since about 20 months old, he's shown interest in the letters. (thanks to the ASL alphabet placemat that Chris's aunt got him. Thumbs up!!) At first, he only paid attention to some of the handshapes, and as he developed the dexterity to do more of them, he learned more of them. (The letter "Y" and "I" are particularly difficult for little hands.) It's funny, because he wouldn't sign the "Y" handshape words (like "play" or "telephone") until he made some deliberate approximation of the actual handshape.

Anyway, now he's made the connection between the English letter and the ASL handshape. And he never stops!!!! Every sign we have to spell out. All his books. Letters everywhere!!! He won't just draw anymore, he makes us write letters. He even tries to write letters by making tiny strokes on the paper and then signing to us which letter it apparently is. He even thinks numbers are letters, like "3" is "E", "4" is "A". Shapes are letters! (A triangle is "A", a circle is "O".) He now has a nice border around his room of the ASL/English letters. He loves it. Now if only we could get lower case.... Naturally, I'm thrilled at the first stage of literacy.

Ellis is doing a lot better in his adjustment to his 2yo preschool/playgroup class at PSD. He doesn't cry his head off when I leave anymore. He looks a little sad, but is usually happy to go in and play with his best friend.

This is a huge relief to me. Because I was having major separation anxiety. heh, heh. I'm really happy for him to be there. We want him at PSD next year, too, for the start of Official Preschool. I have no idea beyond that. Our plan is to take it year by year. Somehow, though, we want PSD to always be in the equation somewhere. It's really important for him to have Deaf friends and a consistent place in his social life in the Deaf community.

The bilingual step is a delicate dance.

* Speaking of stupid county. We had E's annual review for his IFSP (Individualized Family Service Plan) a few weeks ago. SIX people in our living room!!! The county coordinator, a person from the agency that pays for it, E's teacher of the deaf from PSD, our Deaf mentor from PSD, an ASL interpreter from PSD, and an educational consultant from CHOP (to help us sort out this speech therapy nightmare). Ellis blithely playing with his train in the middle of the floor. All this for a 2yo! Since he'll be 3 next summer, we also have start thinking about transitioning for the IEP (Individualized Education Plan). I'm so not looking forward to that process.

Posted by at 09:06 PM | Permalink | Comments (14) | TrackBacks (0)

I need to write this before I forget, because I think this little incident was an important little milestone in E's CI journey.

He's 2 1/2 months post-activation. He doesn't respond to his name as much as I'd like, but then he doesn't respond when I wave him down either. He just gets really focused. I think it's a 2yo thing. But he's responding really consistently to environmental sounds. For example, the other day we were playing in my IL's backyard, which is behind a house that sits next to a busy road. Every time a loud truck went down the road, he'd look up. I explained in sign and speaking that he was hearing a truck go by. I thought that it was pretty good, because it was invisible. We couldn't see the trucks.

Anyway, that's not the real story. We have these "learning to listen" sounds, sounds attached to objects to give them meaning, like "quack, quack" for duck or "beep, beep" for car, or "aaaah" for airplane (some make less intuitive sense than others). E has really nailed "aaah" for airplane. Whether his CI is on or not, he always vocalizes "aaah" for airplane.

Well, the other day, I was sitting in a room and on the floor in the doorway was a car and a duck. He was bending down for the car and I said "quack, quack" (he says "ba, ba"). he changed course for the duck. Then I said "beep, beep" and he picked up the car. I was like "wow, E, that's totally cool!" Then I said "go to your room and get your airplane" (except it was a combination of speaking and signing, more like "aaah" YOUR ROOM GO BRING-ME) And he totally got the airplane and brought it to me!

And another cute E story to round off the evening of our happy bilingual life. In school this morning, they read a book about fall (in ASL). I didn't read the whole book, but the teacher showed it to me and said it was really cute that E was enjoying signing "leaf". So at speech therapy later in the afternoon, the therapist showed him a pumpkin, and they did their stuff with a pumpkin. And then he looked at her and signed "leaf"--'cause, you know, pumpkins and leaves go together. *grin*

Posted by at 11:04 PM | Permalink | Comments (2) | TrackBacks (0)

I've been doing more research on the internet. I think I just need to go away and read a novel. I'm dreaming about deaf issues lately. It's just all deaf all the time. I'm trying to get a feel for the CI community. It's something I've resisted for a long time, because my first experience with it was so depressing. But it's a reality in my life now, and at some point I'll have to reckon with it.

I have mixed emotions reading accounts. For one, I can't believe how quickly people move. How in the 2 or 3 short months of their child's life they have a complete understanding of all educational options and laws in the area, two hearing aids, a possible CI surgeon, genetic tests, and the gamut of other tests done they urge you to do. How is that enough time to truly process that information? How is that enough time to really establish a breastfeeding relationship, for pete's sake!? I wouldn't bring my newborn infant into the germy hospital that often. aack! *sigh* at the end of the day, I just want to say, you know what? he'll hear, he'll have his CI, just relax, sign a little with him. get to know your baby. Recover from childbirth, establish that relationship. You'd sign with a hearing baby, how is going to hurt the deaf baby to relax a little and just sign for a couple months.

It's dizzying reading the race for hearing on these blogs. They don't get a chance to get to know their deaf baby.
Sorry, if I offend, I'm just kind of overwhelmed, reeling from the frenetic grasping for hearing.

Posted by at 10:05 PM | Permalink | Comments (12) | TrackBacks (0)

I wanted to wish the world a happy international sign language day! :-D

E signing "hi!" at the beginning of the summer

Posted by at 08:36 PM | Permalink | Comments (1) | TrackBacks (0)

The two month mark has passed from E's CI activation. He's doing well, especially expressively. When he's wearing the CI, he more regularly turns to his name/other sounds. And he's consistently saying "bye-bye" and "aaah" for airplane. He's imitating speech sounds very well. I'm continually amazed at how great his speech therapist is.

He's also completed two weeks of 2yo preschool/playgroup at PSD. It's three mornings a week. It's been a bit of a tough transition, for him and for me. I leave him crying his head off, but he calms down shortly after I leave and has a great time. He has two good friends, especially, who are from Deaf families, so their signing skills are well-matched. (There's a large variety of signing skills in the 2yo class, depending on how much auditory access the student has/how much signing there is at home.) The boys get along so well and hug and kiss, signing ILY, when they leave. Too cute!!

It's been harder for me than I anticipated. I never pictured myself as the freak-out parent. I think I still have guilt feelings over the CI surgery, and I worry that our relationship will be damaged. But I think it will be fine. And the time alone in the morning is really nice, I have to admit. It's a bit far to go all the way home and back again, so I sit in a coffee shop and read. Luxurious.

The other day I picked E from school, sitting with him as he was finishing lunch. A Deaf woman was there with the Deaf grandmother of another student. E sticks out around his table of 2yo. The class is divided at this point. The half of the class with more auditory access are at one table behind the room divider where speaking and listening is more prominent. The other half is at an ASL table. E sits at the ASL table. It's easy for us to open our mouths and talk at home, and voila! he has a speech environment. It's important for him to have good ASL skills, and though, we do sign at home, it's not like being around native speakers.

So he sits at the ASL table, the red light blinking on his CI. The Deaf woman asked me a few things about E. Then she said, "I wear hearing aids. They tell me to get the cochlear and I say no, God made me deaf for a reason, so I wear hearing aids." I smiled politely. But I was frustrated by her statement, not only for the tiny fact that it was tacitly judgemental of me, a total stranger, but also because, I want to ask, "so what's the difference!?!?" He wears a CI, you wear a hearing aid. You are both getting some auditory access. Why is it okay to wear an aid but not an implant!?!? You are still the same person. I don't think a CI has to change someone's deafness. People don't have to be Deaf the same way! I love meeting new Deaf people, but I was a little annoyed by this woman's bluntness. We've gotten a lot of CI flack on the internet but not so much person-to-person. I'm sure this will be one of many experiences.

Anyway, in light of all this, there's vlog made by the president of Gallaudet University, Robert Davila. View Bob's Vlog (it's captioned for non-ASLers). He is interviewing two Gallaudet students who wear CI's. The message of the vlog is very clear, the normalization of CI's--they don't change your personhood, they don't have to compromise your Deaf identity. I have to admit, I resonate with a lot of what he said. It wasn't too long ago when the same arguments and fears were made about hearing aids, but who talks about aids anymore? I know a lot of people will hate this vlog. I will admit, I don't understand unilateral hatred of CIs.

I work hard at understanding multiple perspectives in all areas of my life and work. It's an essential tool for scholarship. Nothing frustrates me more when others don't do the same.

post scriptum: I'm tempted to close the comments to this post, but I won't. I trust that the old CI dead horse won't be dragged up on here again. We've all made our points. So if you don't have anything constructive to say, please refrain from saying it.

Posted by at 10:14 PM | Permalink | Comments (33) | TrackBacks (0)

bust of Laurent Clerc

By request, I'm posting a bit more about our stop at the American School for the Deaf in Hartford on the way home from our fabulous Maine Vacation. This was our first trip up through New England, and I thought that it was kind of cool how close everything is. Driving through Massachusetts is like reading an American History textbook as you pass each exit. We drove by the exit for Walden Pond and though, 'hey, we should go there on the way home!' Over vacation, though, Chris had been reading When the Mind Hears: A History of the Deaf by Harlan Lane. So when we started talking about Walden Pond again, he suggested that we stop in Hartford instead and check out deaf history sites. (It also worked out at the last minute to see one of my best college friends, who just happened to be teaching violin like 2 miles away from ASD! Woohoo!)

Unfortunately we could drive all over Hartford visiting everything or make it in time to ASD to check out their little museum, but we did get to see the bust of Laurent Clerc. Ellis was thrilled to see the ASL letters sculpted at the bottom. He's obsessed with letters lately. He gets most English letters, but he's a bit stronger with ASL letters. :-) So he had a lot of fun spelling out Clerc's name.

We also took a photo op with Gallaudet and his neighbor girl Alice Cogswell.

I haven't read the history yet, though read a chapter of it on the way to Hartford to be familiar with what we were visiting. Gallaudet was a minister in Hartford, late 18th/early 19th century. The story goes that one day he was watching the neighbor children play. He knew that one of the daughters was deaf and got it into his head to teach her the word Hat by associating the written word with the object. Whether or not she learned it, his passion for deaf education was sparked. Along with Alice's father, an eminent doctor in the city, as well as his good friend, enough support was raised to send Gallaudet to deaf education establishments in Europe to seek assistance in establishing the first deaf school in America. In England, primarily an oralist country, he was met with secretism and general unhelpfulness.

But while he was there, he bumped into Laurent Clerc, a Frenchman who was also in London at the time. Gallaudet finally gave up on England and went to Paris. Clerc was a deaf man, educated at a school that used French Sign Language to teach the students language and knowledge content. Rather than spending long (futile?) hours learning how to speak, their primary motive was restoring their students to knowledge using their natural language. (This was also the time of the Enlightenment in France; it would be interesting to flush this out a bit more.) Gallaudet was excited to start learning sign language but overwhelmed at the thought of how long it would take him to be proficient enough to teach the students in America. He finally persuaded Clerc to come back with him, and together they opened the first school for the deaf in the United States in Hartford, Connecticut. Clerc remained the U.S. for the rest of his life.

So that's the short story. And as we begin our journey with our deaf son, it seemed like the birthplace of deaf culture in the United States was a good place to stop.

Posted by at 10:33 AM | Permalink | Comments (3) | TrackBacks (0)

(I started this last thurs. better finish so I can get to other things)

Today Ellis and I went to the children's hospital (chop) for his weekly speech therapy. I'd prefer that we not be going to a hospital for that as it reinforces the medical associations with deafness, which we essentially believe is a social, not a medical, disability.* But, that aside, the therapist there is the best thing we've got going. Don't even get me started on how dumb my county is. Not to mention the fact that E is the ONLY kid in the county who receives Early Intervention services, has a CI, and whose hearing family signs. Can you believe it? So anyway, I'm having trouble getting a speech therapist in my county because we don't go to the "other" deaf school. So we go to the hospital.

Quite frankly, if it weren't for hauling into center city and going to a hospital once a week, two things I can live with, I'd happily keep our therapist for eternity. I so heart her!!

When we first started with her, I was a little nervous, because she is an AVT therapist, so I wasn't sure if she would respect our desire for E to bilingual. Well, not only does she respect it wholeheartedly, she suggests ways for us to incorporate the speech and the signs without one losing out AND she even uses signs with Ellis (which means she's taken the time to learn a bit of ASL). Of course, her attention is primarily focused on speaking and listening, but she's very good at strategically incorporating Ellis's already existent language.

He's doing really well, especially expressively. He's vocalizing a lot. And now regularly says bye-bye (ba-ba), and I notice him saying "ba" with other signs (like "wait" or "train") as his token word. Very cute.

It hasn't even been two months yet since his activation, so the therapist is naturally pleased with his progress, then she something really interesting. She said that he was catching on quickly and that she's starting to notice that consistently kids who have signed before their CI catch on more quickly than kids who don't, probably because they have a language base. To which my thought is duh. I love that she is noticing this empirically, though. And then she said, "it's a difficult position [being a parent]. I always thought that if I was in that situation I would just go to listening, but now I'm not so sure."

I hope we can stay with this therapist for awhile. I really like her. I'll stay with her as long as medical assistance will fund it. And my county isn't making great strides in finding me someone suitable.

*Before I get raked over the coals for anything. :-) Bear with me as our thought processes develop. When the dominating/majority culture is hearing, being deaf requires social adjustment. It is unfortunate, but nevertheless, a reality. Hopefully, in the future, the adjustment will be more slight. Some of the polemic out there reduces deafness to a medical problem, thus making the deaf person someone to be treated. I hope we can get beyond that, because deaf kids are just as healthy as hearing kids. In fact, one of the reasons I was happy when i found out E was deaf was because he was happy and healthy!! Unfortunately some of the technological tools I want to give him are located in the hospital.

Posted by at 09:57 AM | Permalink | Comments (8) | TrackBacks (0)

Though I almost never post on my wife's blog, I almost always read through the comments she gets re. d/Deaf issues. Mostly I tend to stay away from commenting, because I have a tendency to take things personally, whereas she is much more measured in her responses. However, I feel like taking this opportunity to reiterate for those not familiar with our story, some of our reasoning about the CI.

It seems that most of the negative reactions to Ellis' CI center on the accusation that we are doing what is best for ourselves, and not what is best for Ellis, because:

1. We made a decision on his behalf, without his knowledge or consent
2. The decision we made significantly alters his experience of being
d/Deaf; which is to say, we have interfered in the development of his
sense of self.

The irony here is that if we really had done what was best for ourselves-- that is, if we had made what for us would have been the easy decision, then Ellis would not be implanted. From the get-go, we had the following concerns about the CI:

1. If we implant him, will we get lazy and stop signing to him?
2. Will he be 'classed' or even rejected by the d/Deaf community?
3. Will bilingualism really work, or is it a fantasy that we can give him
the best of both worlds?

Here was the argument we made to ourselves about these concerns: every one of these worries is really a worry about our own commitment and our own sense of who Ellis is now and who we want him to become. The truly selfless thing to do would be to put aside our own anxieties and our own pride in his d/Deafness and choose the thing that will give him every opportunity to be successful in either or both worlds, as he chooses.

The fact of the matter-- and this comes from years of research, training, and experience as an educator of ESL students, is that there is no substitute for acquiring language at a young age. If a child misses the opportunity to learn language at a young age, it is almost impossible to catch up. Not that many haven't done very well, but they can never equal the ease and skill of the early learner.

To not implant Ellis, but to wait until he is an adult, would leave him at a disadvantage should he decide to keep the implant on. His choice would therefore not be between the best of either or both worlds. It would be between the ease and familiarity of deafness and the labor and discomfort of hearing. Not really a choice, is it?

(A deep breath) I can already hear the critics. They've stopped reading already, and they are already preparing their rants about how the devil parents have ruined their son, made him into a moron (?) etc. Maybe we did make a mistake. Shoot, we've made plenty of those already in the two years of his life and we expect to make a few more.

Thank goodness that Ellis doesn't have to be ruined by them, though. For all the talk here about identity, sense of self, etc., I have to say that our view of Ellis's personhood is limited neither by his deafness nor, should he have been born otherwise, his hearing. I hope that Ellis is a full enough person that whether he hears or not, whether he thinks of himself as Deaf or not, he finds a way to live an honest and honorable life in whatever circumstances he finds himself.

There is no way to save him from suffering. There is no way to avoid limiting his choices in some fashion, try though we might. In the end, whether hearing, deaf, blind, paralytic, male, female or neuter., we all have the same basic choices to make about how we will live with respect to our limitations. The choices that Ellis makes in this respect will determine the quality of person he is, and whether or not he merits our respect (he will always have our love).

UPDATE: (Mom here) We just want to clarify that by "acquistion of language" we don't mean, that in order to have Language he needs a CI. He already has a language: ASL, but a CI will help learn English more easily. Sorry. We gotta run, or I'd try to make this clearer.
Dad meant by "acquisition of language" the acquisition of English, treating ASL as a given, since that is already part of our lives.
In other words, BIlingual.

Posted by at 04:46 PM | Permalink | Comments (43) | TrackBacks (0)

Ellis's CI was activated on July 24. It is now August 25. So, how is E doing?
Well, not bad!

Sound awareness is the first step in the CI training process. Learning how to use the CI is often called "rehabilitation", but I find that term kind of yuck. I want to ask, Rehabilitation from what? So on this blog, I will call it CI Training, since it is a tool that needs to be learned how to use.

He's not responding to sounds spontaneously yet. Though we do notice that about every 500th time we call his name, he does respond--in a meaningful way, not just the coincidental nod. If we are in a controlled environment, playing one of our new speech therapy games, he's on the money. He's totally hearing it!!

In this video, we are going through the 6 Ling Sounds: aah, eee, ooh, mm, ssh, ss, which span the frequency of sounds. (Except I forgot Sss in the movie. Oh well.) I get him to focus by holding the train track up, covering my mouth, and when he responds I give him the track. He thinks it's great fun, and later I catch him "talking" to the train tracks. Ha!!

A word from the Technical Advisory Board: Okay, still working on video-editing skillz. So I forgot to delete almost 2 mins of nothing at the end. The video is only 2'50". I tried to make it equally accessible to deaf and hearing. Though my voice-over at the beginning is a little rough, and I didn't subtitle every little incidental comment I may have made, like "Do you have a silly train track on your head?". And there's happy train music at the end.

Posted by at 10:57 PM | Permalink | Comments (49) | TrackBacks (0)

My friend's crazy, smart 4 year old Gid sent Ellis some vmail. Gid is 4yo, is hearing, and loves ASL (he learned it from his smart mama who took it in college). Ellis is, of course, deaf. Couldn't resist posting Gid's mad signing skillz, esp the fingerspelling!

Posted by at 05:41 PM | Permalink | Comments (8) | TrackBacks (0)

Do you know that part in Gone With the Wind where Scarlet cries "I will never go hungry again!!"? Sometimes I feel like that about summer. After surviving four and a half summers in New Orleans with hardly any air conditioning (we had one window unit that would sputter forth a little cool air that you could feel if you sat directly in front of it), I feel like crying "I will never be hot again!". We have 3 window units in our apartment, and I want to hug and kiss them all.

Anyway, that's not really what I wanted to write about. I feel like hiding behind a tree sheepishly after yesterday's post. Today we went down to CHOP (the children's hospital) for Ellis's first speech therapy session ever. And--oh my word!--he was fantastic!!!!

She did the first steps towards auditory awareness where he puts the block in the bucket when he hears her shake the rattle, then experimenting with long and short sounds (feeding the doll a cookie: "mmmmm"; brushing the doll's teeth "brush, brush"), and talking to a ball before putting in the ramp. Some of the things she was doing just to introduce him/me to the activities. He did everything! He totally got it!! He even vocalized! He was hearing stuff. And best of all, he was having so much fun. It was like we were sitting down for an hour of totally awesome new games. It was totally amazing!

It so satisfying to see him using his new CI and enjoying it. And it was fun for me to share sounds i enjoy with him, like the descending fourth of a European ambulance siren, complete with Doppler effect. Heh, heh. Chris and I were totally cracking up making his cars do that last night.

When I was pregnant, I had dreams of starting Ellis on Suzuki violin when he was 3 or so, or whenever he seemed mature enough to handle it. I thought it would be fun to play duets (I play cello). I kind of dropped that idea when he was born deaf. I think he will be able to enjoy music in his way (he already loves dance parties with music thunking and vibrating on our hard wood floors), but it takes a special ear with good intonation to play a stringed instrument well. I'm totally cool with Ellis not playing violin; it was just one of those ideas that I had to readjust. And I guess if he ever wanted to, I wouldn't stop him--a stringed instrument is a nice resonance chamber, after all--but it's just not something I am considering at the moment.

Anyway, I only bring up Suzuki violin, because heading off to speech therapy had me feeling strangely reminiscent of going to music lessons. Only I'm the parent. In the Suzuki method they talk about the parent-student-teacher triangle. The parent extends the lesson to the child's everyday environment, so it's important for the parent to be an integral part of the lesson, especially when the child is young. Suzuki also talks about studying and listening to music for one's individual enjoyment. The child should want to play because they enjoy the music, and it's a part of their everyday lives. (I had a little Suzuki teacher training.) So, in a sense, even though Ellis isn't studying violin, we're still learning new things, how to use and to enjoy our senses. And hopefully, how "to glorify God and to enjoy Him forever."

Posted by at 08:44 PM | Permalink | Comments (7) | TrackBacks (0)

I'm back. Our internet was down for a few days. I was trying to be calm about it, but it was hard. So call me a loser, whatever, it's my social life.

The blog has sort of become all things deaf this summer. This morning, I took Ellis for his last weekly playgroup at PSD. Next time he goes, he'll be in the big Two-Year Old Class that meets without mommies for three mornings a week. It's been sort of a weird experience this summer. The five weeks has spanned Ellis's cochlear implantation. The first week was before surgery, and today, the last week, he's a CI wearer. Well, that's what we aim for. Keeping it on is something of a challenge.

I know it takes time to start making a difference, especially for someone who's never heard. But I thought he might at least start some response by now. After all he is the smartest kid in the world. *grin* It's only been three weeks. Too short. Patience. Time.

Four more weeks until Ellis starts school. Four weeks until he gets to play with other deaf kids again. It's fun to see Ellis sign with other children in play. It's satisfying for him to have a few peers who sign, too.

Sometimes I worry. That he's not signing enough. He needs more language. He doesn't quite get "who?" and "what?" questions. Or that he doesn't tell me what he wants, he just responds to yes or no questions. What have I not done that he doesn't get those yet? Silly worries, I know. The next minute I beam with pride at his prowess. He really is clever. He signs all his alphabet except for Y, I, and J. His pinky isn't quite strong enough. So Cute!!!

Still I worry. More language, more language.

We are used to signing with Ellis. Speaking with him is something we'll have to learn. It's weird to add a new mode of communication.

I am going to say today that it's hard to be a mom of a toddler. Sometimes I find it a tad harder to be mom of a deaf toddler. I'm exhausted. Eye contact, communicate. Run over, don't call. Other times, I feel especially blessed, when my toddler looks up and forms his dimpled fingers into the sign "I Love You."

Posted by at 04:51 PM | Permalink | Comments (10) | TrackBacks (0)

I wanted to post a link to a blog that I guest blogged on yesterday. Amy and I have had some exciting conversations and we wanted to share some our dialogue, which we did on her blog. It's been an incredibly encouraging to me as a parent, yet unsure how my crazy kid's life is going to go. :-) I'm totally pumped, writing the blog entry and VIDEOchatting later. How exciting!!!!

Posted by at 07:46 AM | Permalink | Comments (3) | TrackBacks (0)

When we had a baby and found out that he was deaf, one of the first things we did was set about learning sign language as fast as possible. Signing was something I was considering anyway, because of the widespread popularity of baby signs to give babies early communication tools. And I mean, don't all deaf people sign? The answer, astoundingly, is NO!

There are a huge amount of deaf babies that are born and not taught sign language. It's ironic, isn't it? The professionals tell the parents that if they sign with their deaf babies, they'll never learn how to talk. Which is like the biggest myth ever. But it started with Alexander Graham Bell, you know, the American hero who invented the telephone? He actually had some really harsh things to say against deaf people and signing, bordering on eugenicsm. It's really shocking. But ever since there's been this ridiculous strain of auditory-ism in deaf education.

Why wouldn't you teach a baby using its strengths in those early language years? I tell my friends that so many people don't sign with their deaf babies, and they are so surprised! But we sign with our hearing babies!

Amy Cohen Efron, a Deaf blogger, made a great essay vlog (videoblog) about this Great Irony.

The AG Bell Foundation national meeting is this weekend, and many Deaf adults are protesting for the rights of deaf babies to sign. I've appreciated the polemic they've taken, promoting bilingualism, with the emphasis on teaching babies using their strength, their visual and manual senses, early on.

It doesn't seem like the protest is going very well, given the report on the blogs. It's kind of sad, because the conference hotel is very hostile, when protesters planned very carefully how to be peaceful and positive.

Posted by at 11:43 AM | Permalink | Comments (12) | TrackBacks (0)

Ellis's new cochlear implant was activated on Tuesday. Overall he did really well. He looked around, and for the most part, seemed interested. At one point during a break, I signed to him, "Do you want to hear more?" and he looked back and then nodded. But then he also nodded for a cracker. I'm not entirely sure if he understands "hear" yet. The cool thing, though, is that we have sign, so we can talk about what's happening.

Since we've been home, he's been tolerant of the CI, but not loving or hating. I'm going very slowly with it. If he seems bothered, I pull down the volume (we have some control over volume). If we're playing with a familiar toy that been making sound all along, I push the volume up a bit, and he seems curious.

By late afternoon, he's ready for quiet again. I don't blame him.

I made a movie of the experience. I subtitled the part with the technician, in case you're deaf, but somehow they went kind of awry a bit towards the end, especially in the low-resolutioning of it for web use. But the important parts seem to have come through okay--just the part with the technician explaining stuff that got messed up. My apologies. I've already spent way too much time on a 5 minute movie.

In the room with us, was the technician, my sister, Ellis's regular EI teacher, and a teacher from CHOP.

Update: sorry to those who can't see it. Google says that it's "processing". I'm not sure what that means, nor why it was seen before but not now. I'll give it a little more time then try again if there continues to be a problem.

Another update: if it doesn't work with Google, try YouTube (wh. may take a few mins to process, if you're just tuning in):

Posted by at 12:49 AM | Permalink | Comments (24) | TrackBacks (0)

Yesterday we went to a picnic that CHOP sponsored for the families of kids with CI's. At first I was a little reluctant to go, since we seem to been Auditory-ville around here. Every time I go to parent events I feel like the weirdo who signs. But I had met some nice people at the educational seminar thing and the other family with a CI kid from E's class was going to be there, so I figured we'd go.

And, yea, I was the only signing parent. I was hoping that maybe there would be Deaf parents there, but no, all hearing families. But as the day progressed, other moms came up to me and wanted to know more about how they could learn more sign (since I sign constantly with Ellis so it's kind of hard not to notice), expressing desire for their kids to grow up bilingual (as we do for E). I was totally excited!! And did my best to be as helpful as possible, passing out my phone number.

He gets activated on Tuesday. I'm so nervous.

I think Ellis is pretty much set to go into the 2yo class at PSD this fall. It's a bilingual classroom with a Deaf teacher and a hearing teacher. They'll be meeting 3 mornings a week--without the parents!!

There's a part of me that is like--yikes! 2yrs with no mommy!! But another part that is savoring the opportunity to like maybe read again. Maybe write one of those papers that I've shoved aside in these infant years. I think E will do well. He already knows the kids and the teachers, and I'll probably just stay close by in case there is ever a problem.

And I think I'm going to enroll Ellis in Kindermusik this fall, too. I emailed a little with the instructor, and she had had one CI kid before. I thought it might be a fun, different listening environment. And the classes are being held at a church that is practically across the street from where we live! Score! So, we have one programmed 2yo coming right up. heh. I think it'll be fun, though.

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Ellis and I went to his once a week class this morning. Only a couple of other families were there, so it was small and nice.

I stayed late talking to E's EI teacher and ended up bawling, which I've never done before. A flood of emotions overwhelmed me in the small intimate environment. I don't think I can even begin to unravel my feelings in a coherent way at this moment. And I think it has more to do with me than Ellis actually, except that he's inextricably a part of it all.

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This afternoon we rode the train into center city again to attend a seminar about educational issues for children with cochlear implants. It was helpful for me because it brought together a lot of the information that I knew sort of floating around my head, and I was able to then apply and categorize the information with regards to educational strategies. For the immediate future, it helped to have an idea of the spoken language progression and how to visualize those steps to progress.

Until now we have been focusing our language efforts almost entirely on ASL. For one, we think it's extremely important for Ellis to have this language as a deaf individual. It is the language that utilizes his strengths to their capacity and the language of his deaf peers. And secondly, as an infant and toddler, these are prime language acquisition years, and we feel that it has been important that he be given language not wasting time with futile hearing exercises. Now that he will have access to sound, he already has a very strong language base to bring meaning to this new experience.

The seminar was helpful in giving me ideas for how to think about this added aspect in our lives. But we do not intend to give up signing. There are varying degrees along the spectrum of protest for signing alongside having a CI. While I certainly can appreciate the necessity of providing sound in order to teach to listen, I think there will be a place in the day to turn off our voices and enjoy Ellis's strength.

I feel like we're in unchartered territory. I don't know where to find meaningful discussions and research that really get at the heart of the carefully nuanced situation we desire for our home. However, I do appreciate the conversations I'm able to have with the people at CHOP, they seem eager to dialogue about this nuance, to engage my dissatisfaction with what is on the table now. If they had come across as biased toward the auditory side of the spectrum, I think I would've shut off. We may not even have gone on with the CI. I don't know. Anyway, all that to say we had thought-provoking afternoon.

And Ellis! What a gem!! I didn't get a babysitter. I asked around a little, but I didn't try too hard, because E is having more separation anxiety lately, and I didn't want to stress him out since I don't know how much all this has been affecting him psychologically. And I thought the seminar would only last for like an hour. Well, we were there for over three!! and Ellis played cheerfully the whole time!!!! Had I known how long it was going to be, I would've at least brought my computer so he could watch Cars or something. But, what a kid!!! *parental beam of pride* ;-)

Posted by at 09:06 PM | Permalink | Comments (2) | TrackBacks (0)

We went to the hospital today to pick up Ellis's external processor for his cochlear implant. It won't be activated it until next week. So we have a week to get used to it. I think he knows it's his cool new thing. Believe me, it's been on and off about a billion times today.

It felt so nice to be having an easy-going appointment after all the drama of late. We took the train in, had a short appointment, ate lunch outside, walked to the bookstore and browsed (I actually picked up a book on IEP's that looks like it'll be really helpful), got smoothies, and took the train home. Except for the part when we entered the hospital doors, and Ellis whimpered knowing where we were, I think he had a nice day, too. He has a great time riding the train and loved being out with his mommy and daddy.

And he and his daddy have a gleam in their eye because cool new stuff that involves batteries and wires has entered the home.

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Ellis loves his popsicles. Those of you who know ASL will enjoy his little kid signing (I gave a few clues here and there for those who don't--hope you can read it now that it's all low resolution.)

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So we're three days past the surgery, and here are couple questions I get a lot.

So can Ellis hear now?
No. There are two aspects:
1. Just having the device inside his head does not give him access to sound. There is an external processor which he will either wear behind his ear (like a giant hearing aid) or in a pack--whatever is more comfortable. The external processor picks up sound and sends it to the internal processor. There's a magnet inside and outside to help attach the wire to the head. See how cochlear implants work for a diagram. So he gets the external equipment in 2 weeks. In three weeks, it will be activated. They will do it gradually through a series of tunings. It won't be fully on until October.
2. Even when it gets turned on, he won't "hear." I prefer to use the technical term "auditory access" because I think it describes it more accurately. He will not have hearing as much as he will have auditory access. It will take time and therapy before he starts to be able to really utilize the technology.

So Ellis had surgery three days ago. Is he still loopy?
No. The anesthesia seemed to wear by early the next morning. And he was like *zing* back to normal! he's been jumping, running, playing, eating as well as anything.
However, he's not sleeping very well (and he's not a great sleeper to begin with). He's tired, not in pain, but just can't go to sleep. And when he wakes up several times in the night, we go through it all over again. I don't know if he's afraid of going to sleep or what. He just sits up in bed and shakes his head 'no', which isn't really like him. He's been through a lot of upheaval.
Result: really, really tired mama. And my back is killing me from be so tense all night long.

If I think of anymore I'll post. Or if you have any, you can ask.

what will the world sound like to him when it is activated?
I don't really know. Adults who have gone deaf later in life and then had an implant describe speech as sounding MickeyMouse-ish.

Will his brain have to learn to 'interpet' or process the sounds he hears, into language?
Yes. It will be easier for him since he is younger, which is the primary motivation for doing it so young. But it is a lengthy therapy process.

Will he have to get a new implant as he grows bigger?
No. The cochlea and inner ear are fully formed at birth.

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Well, we're home. The surgery went as well as it could've. Praising and thanking the Lord for his mercies.
They assured me that he would throw up on the way home--combination of ear surgery, anesthesia, motion. But he just slept.
He slept when we got home. Then watched Cars for a little bit.
He threw up once a couple hours after we got home. Hopefully, that'll be it. He's sleeping again.
It's been a long day. They say he should be in good shape tomorrow.

Thanks for your prayers and kind words.

Posted by at 09:50 PM | Permalink | Comments (13) | TrackBacks (0)

Tomorrow is the big day. As my friend's kids so tactfully put, the day Ellis's head gets drilled. The cochlear implant surgery is scheduled for tomorrow, and so far everything seems in order to go. We arrive at the hospital at 9 am. This has been a stressful time for us. Definitely one of the more difficult decisions we've made. But I think we've made the right decision.

Nevertheless we are still quite nervous, and would appreciate your prayers. Not only for the surgery, but a whole reorientation in life.

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Chris, Ellis, and I left the house at 9 am this morning and drove down to the hospital for Ellis's scheduled 10am CT scan. We arrived on time, got checked in, and waited and waited and waited.

I was already a little edgy, because for the CT scan they needed--of the inner ear--he had to super-humanly still, so that meant sedation. And with sedation means no solids, then no clear liquids for requisite hours ahead of time. I always worry how E will do when he starts to get hungry. But, he was having so much fun running around with the other kids in the waiting room that his lack of breakfast didn't seem to bother too much. Finally an hour and a half later, we were taken back to the sedation unit.

One by one, people filed through, explaining the drugs, the procedure, giving forms to sign, taking vital signs. And then they inserted the IV on the back of his little hand and started dripping the drugs into his system. He quickly went groggy and then fell asleep. I hate it. I hate watching that unnatural haze settle on him. I cried. It was hard on Chris, too. It was his first time seeing E sedated; it was my third.

We got to accompany Ellis into the room where he had the scan, a simple 10 minute procedure. We were given lead vests to wear. They lifted Ellis's limp body onto the stretcher thingy and draped a lead covering over him, too. The bottom of his red sneaker peeked out, a metonym of the boy attached to it lying asleep.

When the scan was over, he was wheeled back into the room, we then settled down to wait for him to wake up. I found some lunch; we watched Basil Rathbone on the TCM channel and fidgeted in the uncomfortable chairs. Two hours later Ellis woke up, writhing in the cords attached to him. He did fine and drank a cup of juice well. Unfortunately just as he was waking up, Chris had to leave to get to work on time. It took almost an hour to get discharged from the sedation unit. And during that time, Ellis was desperate to get the IV out of his hand.

Finally we were ready to head down to meet with the ENT. I plopped the woozy boy in the sling and we walked downstairs, and proceeded the long waiting for each stage of this visit. E drank some more and ate yogurt. He was frantic to get down and run around, but he couldn't. Every time his feet touched the ground he pulled the drunken sailor routine. Unfortunately he could not understand this simple reality, so the next two hours were of me wrestling a screaming and writhing Ellis from barging through hyperreality. And we waited.

The ENT doctor finally came in, reviewed the CT scan results with me and all was clear and looking good in his inner ear. He talked about a few basic aspects fo the surgery with me--nothing new, reviewing basic procedure and risks. He asked me which brand of cochlear implant we wanted. Oh, something I hadn't thought of; a choice between two. And then all of a sudden I found myself with operation consent forms poised underneath a pen in my hand, the vehicle for my signature. I wanted to choke as I signed, but managing Ellis diverted my emotions.

The ENT left, the nurse practitioner came back in. Quickly followed by my angel MIL who had called earlier while I was in ENT purgatory and had come to rescue me and the Hyde child from Septa. The nurse explained to us what is going to happen next. We have a date of July 2 set aside for Ellis's surgery. That's less than three weeks away.

It all so seems so perfunctory, a date to schedule a drastic change in my child's life. A change I'm not even sure I want. He's such a beautiful kid. He's beautifully deaf. He signs so well and so naturally. His world is exciting and wonderful, and he doesn't need to hear for it to be so. He has a language. Why does he need another one? Why does he have to have the one that rest of America uses? Why does he have to learn how to talk? Why can't he just be the way he is? He was born this way. Why can't it stay the same?

We have been so hesitant about attitudes toward the cochlear implant. It's benefits for hearing are tremendous and often gets over-eagerly embraced as a "cure" for deafness. We have always viewed the use of the implant for our son as nothing more than a "fancier hearing aid." We don't want it to compromise his deafness, because it is just a tool to make a part of his education easier. For him to be bi-lingual and bi-cultural there truly needs to be two, and it seems like the implant will make it easier for him to have the English side of the bi.

But don't congratulate us. Don't send happy vibes. I sit here and sob. They will put wires and a magnet inside my boy's head. Is that something to be happy about? I groan in this world's brokenness.

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