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 (3) | 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.

Posted by at 05:11 PM | Permalink | Comments (9) | TrackBacks (0)

Posted by at 11:17 PM | Permalink | Comments (2) | TrackBacks (0)

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.

Posted by at 11:05 PM | Permalink | Comments (0) | TrackBacks (0)

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.

Posted by at 09:29 PM | Permalink | Comments (3) | TrackBacks (0)

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.)

Posted by at 12:38 PM | Permalink | Comments (12) | TrackBacks (0)

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.

Posted by at 08:32 AM | Permalink | Comments (6) | TrackBacks (0)

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.

Posted by at 03:05 PM | Permalink | Comments (18) | TrackBacks (0)

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.

Posted by at 10:01 PM | Permalink | Comments (21) | TrackBacks (0)

The feelings that welled up inside me upon the birth of my first child probably echo those of every other new parent. Boy, I sure hope I don't screw this up. All the emotions can be overwhelming: the joy, the trepidation. But then you get your groove, and though as age grows into the next, you have to deal with the uncertainty, it's not quite like the first time you held that baby. Having a child that needs more attention in some categories than is typical escalates the anxieties sometimes.

When we first started going down the Deaf Track with Ellis, it was all so overwhelming. Deafness was not something either of us had ever really encountered. We had learned new languages before, so at least we had that experience. But being in the process of learning the language we're teaching our son sometimes can get a little stressful, because I don't want my inabilities to hold him back in his language development. Overall, we have a groove, though. We have familiar territory, our routines, our trusted teachers and friends. And we're having a great time.

Now we are facing a new twist to things. At first I thought my fears were about how the cochlear implant will change our routines, but I think on a basic level they're about changes that will inevitably come as Ellis gets older...namely, speech therapy.

Today I woke up at 7.30 on Ellis's floor. I have no idea how I got there. Just kidding. Actually, to pick up where we left off, after he climbed out of his bed and padded into our room, I tried pulling him into bed with us, but he was having trouble settling, and I didn't want to disturb Chris who gets up for work insanely early. So I took him back to our little sleeping area that I set up on his floor. He had trouble settling, but eventually fell back asleep. I don't really know how long it took him, because I was so zonked out. I just provided the face to contort, which is like his most comforting thing ever. So, since Ellis had a crazy night, he woke up at 8.30, which was great! Except for the teensy little fact that we were supposed to take the 8.36 train into center city for his next CHOP appointment. I figured we could barely make it if we took the 9.09, so we did that.

Except that in my exhausted, post-major-trip state, I totally forgot about getting a stroller from the car: either the one in the back of the one Chris had at work or the one in my MIL's car. I don't have a carrier for him, either, since he's outgrown all we did have. (I'm so canvassing for patterns after today. SOMEthing!) So I thought we could just wing it with him walking part of the way. Well, I had to carry him to the train station this morning, because we had to walk on top of snow. And as I panted up to the station the train was already there, thankfully we barely made it.

But then I realized that I wasn't going to make it to my appointment in time by waiting to switch trains to the station near the hospital. So in some demented moment, I had this insane idea to walk from 30th Street Station to the hospital, about 10-11 blocks, at least a mile, thinking this somehow would be faster than waiting for the connecting train. Folks, I hoofed it A MILE carrying my nearly 30 lb toddler!! And no, it didn't save any time!! I was still 20 minutes late after walking for half an hour. My arm still feels like it's going to fall off. Somebody explain to me why I ever thought it was a good idea...

Anyway, back to the topic at hand: the appointment. Well, Ellis met with the audiologist of the cochlear implant team, who confirmed what his regular audiologist already did...that audiologically he's a candidate. Then we met with the speech therapist and a couple educators, who popped in for a bit. I was pleased that they all signed with Ellis.

We haven't really done much yet with speech therapy, yet, though planning to start soon. I have that overwhelming feeling of starting something new--feelings of uncertainty about whether I haven't been doing enough, or whether my pleased feelings about his signing ability were misplaced. I know it's probably silly. The therapist gave us a lot of fun things to do to get him to vocalize more purposefully, imitate mouth movements, and start to speech-read. He began to pick it up immediately. Sure is handy to have a smart kid! :-D

I guess ultimately this post is angst over the next stage of development, because I'm all sentimental about the fact that he's just starting to sign BIRD properly now, too. Instead of facing toward his face, he now makes the bird tweet facing out. :-( It was so cute.

Posted by at 09:44 PM | Permalink | Comments (4) | TrackBacks (0)

Valentine's Day dawned wintry and blizzardy. Sleety snow misted around us, and a chilly wind found the spot between my scarf and coat collar. At 7.30 am I was trudging through snow in inadequate (yet my sturdiest) shoes with the umbrella stroller strapped to my bookbag and a heavy Ellis in my arms, awkwardness compounded by the fact that he was wearing a million layers and a very puffy coat (in fact, we just call the coat "Puffy", as in "let's put Puffy on; we're going outside"). We met up with my MIL who had valiantly slid her way over to our train station, and took the express train to CHOP (the children's hospital of philadelphia) for Ellis's appointment. Last May I had called to make the appt and was put on the waiting list. In Oct they called me with a scheduled appointment for today. There was no way a little snow was going to stop me. We had an appointment with the geneticist to, hopefully, find out why he's deaf.

When meeting with a genetics specialist was first presented to us as an option, we didn't think too much about it. For one, we didn't mind that Ellis is deaf, and two, we don't mind if we have more deaf children. But since there weren't obvious reasons for his congenital deafness, such as, family history or illness, we were advised to go ahead with one to rule out any other possible problems that may accompany hearing loss, which seemed reasonable enough, and insurance covered it.

This was a stressful appointment for me. Probably more stressful than the MRI last June with its sedation and scariness. First I had to gather all his medical records from in utero on, which meant a lot of time on the phone and trying to get faxes done. And I find it difficult to spend that kind of time doing serious paperwork, because I don't have it! (the time, that is). And I was worried that I would do something wrong and they wouldn't have the right information, which is kind of silly, but nevertheless, I was kind of stressed about it.

Then there was getting to the appointment, which had us moving a little earlier in the morning than usual; so I was on edge to get us out of the door on time. I wasn't too worried about the snow until I was actually in it and all of a sudden realized that I don't have snow boots and hadn't occurred to get any, since I've been living in the South for the past 10 years and forgot what winter can really be like and oh no! my feet are wet and cold. I knew the train would be running, so all I had to was get to it.

Then the actual appointment. I didn't know what it would be like or what they would do in order to have a genetic evaluation, which seemed so tantalizing exotic. They did a brief physical examination of Ellis. Took our family medical history, for which I was especially grateful to have my MIL there for so that she could account more fully than I know for Chris's side. It's amazing what they were able to tell from that. With Ellis's physical evaluation, they were able to rule out with a degree of certainty any syndromic cause, which comes with a package of other problems. But then they needed blood and urine to do the actual genetic analysis.

Yea. Blood and urine from a 20 month old. The blood part was short, traumatic, over, and soothed with cool stickers. Very scary to see the tiny needle in my boy's arm, but he was a trooper. Then a urine sample. So how do they that? They give you a sack with adhesive around it, and you stick it to the baby's bum in such a way that they will pee into the sack. Sound like fun? Yea, that's what we thought, too.

I had given him a sippy cup and juice box, so I knew he was ready. But I think it was too weird for him. I felt bad, because I knew that it must be dreadfully uncomfortable, so I took it off and let him play free on the examination table, cup handy. Well, he wanted to play with the cup, and I was stupid and let him. So by the time he started peeing, I couldn't grab the cup in time, and there was pee all over the table, and he walking in it in his sock feet. And, of course, I don't happen to have an extra pair of socks with me. At this point, I was about ready to lose it. Between exhaustion and the need for lunch, I was shaking and desperately wanted this to be over. My MIL came to the rescue. She went back and got another sack and another cup. I put the sack on a little more comfortably, put a diaper on over it, hoping it would feel a little more normal down there, and took his socks off. We went down to the cafeteria for lunch, and I cuddled a very sleepy Ellis and gave him another juice box, hoping he would relax enough to pee.

Down in the cafeteria, we bumped into another family we know from PSD whose daughter is in Ellis's class. She was there for an ENT appointment. Polite begging obtained us a loaner pair of socks; thankfully, they had come prepared. After awhile, I took Ellis to the restroom to check our progress. Bingo! The restroom didn't have a changing table, so I just had him stand there while I took of his diaper and pee sack. I needed to put some it in the sample cup right away, because it was an open sack of hard-earned pee that I didn't want to lose. So I quick set about doing that, and Ellis is standing there with his fleecy pants down by his ankles, and wouldn't you know it, he pees again, all over his pants, which thankfully were absorbent enough to protect the borrowed socks. Well, I did have an extra pair of pants.

So to shorten the story, as I'm sure you're all absolutely riveted by my child's bodily functions, he's cleaned up, the sample is delivered (and I run to more friends from PSD), and we head home. Poor baby was so tired and actually fell asleep on my shoulder on the train, and didn't even wake up when I put him in the carseat in my MIL's car at the station.

It was still snowing and the road's weren't great, but driving into our driveway with a slight incline at its entrance, my MIL spun her wheels and couldn't really get up. There was a lot of yucky slush. Well, I was afraid that the slush would freeze and that Chris wouldn't make it into the driveway when he got home frome work later in the evening. So I go put on his boots and shovel that entrance to our parking lot. Well, I shoveled for quite some time, made enough progress for my MIL to get up and into it, but I didn't deal with all the slush. It was incredibly difficult, because the slush it very heavy. And I'm paying for it today with a very sore back (love sitting up against our radiators!) and legs and knees. And then all my work was for naught anyway, because it still kept snowing and it was covered again, and then around 9.30 pm someone came with a snow plow and plowed our driveway. Yea, I felt like a loser.

So, it wasn't the best day ever, but there were a lot of things that made it better. I was really glad for my MIL's help and company. I don't know why it stressed me out so much. I think this whole appt was kind of focal point for me to channel other stressors in my life. Since I got home and settled I've been crying. I'm so exhausted (so go to bed, why don't you, instead of writing mega, super blog entry). I cried myself to sleep last night. And I cried all evening tonight. Poor Ellis. At least he thought it was hilarious every time I blew my nose.

We did manage to celebrate Val Day a bit today at a party at a church friend's house. Ellis and I were both a bit tired to really get into it, though. But we have a busy weekend ahead. And with the aid of some nice tea and some incredible Lindt chocolate a friend brought from Switzerland, I think I'm set to sleep...for a little while, until somebody decides he wants company (somebody short and cute and who shall remain nameless).

Posted by at 11:36 PM | Permalink | Comments (6) | TrackBacks (0)

(Still processing. Try back soon!) Good to go!

I've been trying to collect the different signs Ellis does on video. Here he is signing Bath and then Dirty (fingers wiggling under the chin). Clearly, he needs a bath after yummy spaghetti for dinner. (Funke, that Tshirt is in honor of you.)

He's signing so much these days. We try to keep track of his words. I think he has over 60 signs he uses, and he imitates everything, even if you wag your head funny in conversation. He picks up words as fast as we can give them to him, which keeps us on our toes learning vocabulary in ASL. We have a Deaf Mentor coming as part of our Early Intervention services, and that's helping some of our more complex ASL needs, like grammar and whatnot. We're due for another class; our schedules are so wonky, though, that it's hard to think about how to fit it in.

We do try to go as many events as we can at the Pennsylvania School for the Deaf. Ellis and I (or occasionally daddy) go on Wednesday mornings for the One Year Old Crowd Group. They do some age-appropriate language-building exercises/games and encourage hearing parents with their ASL. It's all pretty low-key, as you would expect for this age group. I enjoy the opportunity to practice signing with the staff and Deaf parents/g'parents.

Last night we went to PSD for Silent Dinner Night. Totally voice-off. It was so fun! We're good enough in our signing that that kind of opportunity doesn't scare us, but still elementary that we have to really concentrate and don't always catch it the first time. Receptive skills are the most difficult for me learning any language. I can encode better than I can decode.

I'm so glad that we have PSD, especially for Ellis's sake, so that he can be around native speakers and not just crazy Mom and Dad. He had so much fun. He wandered all over the room, pausing to watch conversations, waving to people, and generally being charming on all fronts. At one point, one kid hopped up on the stage to be silly, and Ellis toddled right up there, too, staring across the room waving to everyone. We could barely keep him off of there, he loved it. It was hilarious.

People are always impressed by our signing abilities as parents, which is at the same time encouraging and depressing. I mean, it's nice to be congratulated for anything, but we're not that great. Really. So if our abilities are impressive for the typical hearing parent's, that's kind of sad. We have a long way to go. I will say that there's a lot to say for not being afraid of language...any language, even your own. Don't be scared of big words, of using proper syntax, of crafting your style. Love your own language, and then embrace others!

Posted by at 12:50 PM | Permalink | Comments (1) | TrackBacks (0)

Today we popped over to see our friends Amanda and 11 mo old Maddie. While Maddie was climbing all over me and handing me a teddy bear, Amanda managed to capture on video Ellis SAYING 'mom' (it's actually "ba", but since he can't hear it anyway, that's pretty good!). Watch the movie here.

What's amazing is that he has connected a vocalization to a word. I didn't teach him this, and he's had no speech therapy yet whatsoever. He also gets very little auditory access from his hearing aid. (So little that he's actually a cochlear implant candidate.) We've been focusing totally on the visual acquisition of language so far. He made the connection entirely on his own. Now he's using "ba" for other words. It's a definitive sound he makes for when he's intentionally talking. "Ba" is 'mom', but it's also 'milk". He links the sign and the word.

What a kid!!! He never ceases to astound me.

Posted by at 11:01 PM | Permalink | Comments (6) | TrackBacks (0)

I'm too tired to really write much tonight. I've got to go to bed.

I just got back from the train. I was at CHOP (Children's Hosp. of Philly) this evening attending a parent's panel for cochlear implants. A few parents on the panel, a few in attendence.

I wish I hadn't gone. Other than the fact that I was totally bored. These people were so Not Like Me it was just really hard. In fact, I'm usually the type of person that can't resist participating in these kinds of things, because I'm social and I like to talk. But I couldn't find a way to say anything this evening. I was just on such a totally different wave length.

For one thing, I don't mind that my kid is deaf. And for another, I don't mind that he knows that he's deaf either. That is one fundamental difference between me and the others. And then it's just down hill from there.

It was just depressing. I know that there are many options. And that every family is different with its own needs. So why do I feel so out of place when I say that we sign and want E to be part of the Deaf community?

I just left feeling annoyed. I don't fit the mold. The white, middle-class, suburban Thing To Do is not what I'm doing. Once again!

So this post is more about how I'm feeling annoyed at once again being on the fringe, but absolutely depressed by the mainstream. I'm annoyed about being on the fringe, not because I want what the mainstream has or does. I'm annoyed because I feel like I'm tacitly judged (whether I really am or not).

I know I'm not making sense. You know what, later, I'll post the more thoughtful version, which will include the visit to the oral school that we did last week, which also ugh-ed me out.

Okay. Just ignore my brain barf.

Two positive things to end with: I got to spend quality time with my good friend Em, who was kind enough to accompany me. And I met another mother whose 2mo old was just diagnosed; at least I could offer an encouraging word. She seemed cool. I wish I could've chatted more with her.

Posted by at 11:24 PM | Permalink | Comments (2) | TrackBacks (0)

The protest at Gallaudet is over. The Board of Trustees met over the week and rescinded the contract from Jane Fernanded for the position of incoming president. Having heard absolutely zero good about her; having seen her NOT act in a reconciliatory manner during the protest; having heard many stories in which she has hurt many people--I'm glad she is not going to be put in such a position of leadership.

Read about it on:

The Washington Post
Deaf DC Blog
Gallaudet's press release
Deaf in the City blog

All talk of the desire for communication and healing. Again, I highly recommend reading Deaf in the City, for profundity and lucidity.

Posted by at 08:58 PM | Permalink | Comments (0) | TrackBacks (0)

The next installment of the history of the current Gallaudet Protest is up on Deaf in the City.

I'm just shocked. I can't believe that an administration is behaving so badly. You want to shake them and say, "Hello! This isn't a dictatorship!"

To carry on with a Harry Potter analogy in the post, I feel the horror like reading Harry Potter 5. Remember that sense of dread in the book when the place that was once safe was all of a sudden the enemy?

Posted by at 12:58 PM | Permalink | Comments (1) | TrackBacks (0)

I've been somewhat following, with interest, what's been happening at Gallaudet, especially since that institution may be an option for my son someday. I'm also intrigued with the protest from the perspective of higher education institutional politics. As this blog ruminates, "I wonder. What would happen if this was Harvard and 135 faculty and students were arrested because of protesting concerns about the administration? What would be different?"

I've been following the blog, Deaf in the City, for some time. The writer, who is Deaf, gives a very clear, well-written account of things. His History of Gallaudet Protest is especially informative and lucid. The mainstream media tends to fix on one or two points, but don't have a sense for the pulse of the matter, and I've found that reading Deaf Blogs is a much more helpful way of getting a sense of what's really happening.

Posted by at 09:34 PM | Permalink | Comments (3) | TrackBacks (0)

We haven't had a doctor's visit in a couple of months, and man, I was gettin' complacent there. So we hauled off to see the audiologist today. Complete with arriving at the train station two minutes before the train and realizing that I forgot my cash and the ticket counter was closed. So we skipped that train, went to Wawa to get cash and snacks, and arrived at our appt 15 min late. Thankfully, our audiologist is very nice.

Ellis is such an amazing kid. He loves living. He loves riding on the train, he loves his snacks, he loves the audiologist, he loves his hearing test, he loves the little chicken that lights up when he hears a sound and looks at it, and he loves everyone that passes and smiles at him, which he rewards with a big cheesy grin. He was such a big boy today. He sat in the chair all by himself today in the hearing booth, and he didn't squirm or try to climb. He was focused and attentive. I sat on the floor in front of him, blowing bubbles and doing whatever, to distract him so that he would only look at the lighty chicken in response to a sound that was played through a wire stuck into his ear. He did so great! He kept smiling and signing chicken. Funny boy. Today he had two hearing tests, with and without aids, and he got new ear molds. Since this will probably be his last ear mold before he gets a cochlear implant, I ordered him one in fun colors, blue and green stripey. I can't wait until they're ready. And, man, they were expensive, I can't wait until this Medical Assistance thing goes through, so we don't have costs like this anymore. Sheesh!

When we had some down time waiting for a hearing booth or for the audiologist to calibrate the hearing aids, Ellis wandered around the hallways, showing off his new walking talent and waving at all the audiologists and passersby. He sure has a way of taking over a place.

After two hearing tests and new earmolds, we were pooped. Waiting for our train, we wandered around University City for awhile and went to Starbucks. He almost fell asleep in his stroller (which he NEVER does...and I mean NEVER)!

As we stood waiting for the train, the date "September 11" blazed on the lighty screen with the minutes of remaining wait for R2 Warminster, R6 Norristown, R5 Doylestown, etc. It seemed odd that we should all be standing there in our absorbed little lives with such an iconic date gleaming over us. I wondered what the platform looked like at the very moment five years ago, at 5:50 in the afternoon. Probably ominously empty as people, who would have otherwise stood on the platform in selfish impatience, clung to each other in their homes, on the street, in front of TV's. "September 11" in red lights over us, blazing its silent memorial.

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

I am totally loving Google Reader. I've loaded all the blogs and news sites that I read/would like to read and it puts it all together for me. So now I'm not missing blogs I'd like to catch but don't always have time to catch on the blog rounds, and I'm saving time by not doing blog rounds because Google checks it for me and puts all the updates together with little excerpts that I can click on if I want to go to the site. Love it! Love it!

I've been sitting on this entry for a few days now, from this woman's work. I've enjoyed this blog from time to time for a while. She's a writer, a feminist, a homeschooler, and mama to a boy and an adopted black daughter (the family is white). She writes about writing, mothering, feminism, homeschooling, race, fertility, adoption, etc. The entry that I've reread a couple of times is about how to provide their daughter with a racial identity that is different from their own, to give her the culture, the experience, the role models, to give her a healthy sense of self.

In fact, it was this woman's experience that immediately popped into my mind when I first realized that, in a sense, I would have to do the same for my son. My son was born with a different identity from ours. He is deaf; we are hearing. He has a language and a culture that is his and different from ours.

On the first day of the ASL class that we took last month our teacher approached us as we were leaving at the end.
"Does your son know he's Deaf?" she asked.

I replied, "well, he's only one year old. But I sign to him 'you're deaf, and I'm hearing'."

The teacher nodded "good, you're fine."

I reflected on the question later. At first it seems an odd question. After all, he is only just a year, which she knew, and I doubt he possesses much self-awareness other than "I'm hungry" or "I want Mama", and is that self-awareness or just visceral urges? what about more abstract matters? for instance, does he know he's a boy?

But for me, the question spoke volumes, and I wouldn't have known until recently how much it could mean. We have been surfing fast on top of the learning curve imbibing all we can of sign language, deaf-related issues, cochlear implant issues, etc. To think that at the beginning of this year, we barely could spell our names, and this summer we enrolled in ASL II. And at the beginning of this year, we barely understood the level of Ellis's hearing loss, and now we have opened the fascinating box of what it means to be Deaf. For Ellis to know that he is Deaf is no small matter.

A deaf subculture exists in the United States, unified by the use American Sign Language. I'm fascinated with how a shared language has created a shared culture that exists in tandem with another culture. From early on I was struck with how hard this language has fought for existence. When I first approached Early Intervention services when Ellis was two months old, I knew nothing, just that he had significant hearing loss. I've never been exposed to deaf culture; I had never met any deaf people until Ellis was born. Early Intervention asked me what our priorities were, more speaking-centric? or to include sign? Actually I think they asked some stupid question where they kept using the word "communicate" for "speaking". And finally I'm like "Isn't it all communication?!" They obviously did not have a very sophisticated idea of what communication means. But I digress.

I didn't think not using sign was an option; it just never has made sense not to use it. Providentially, we were assigned the Pennsylvania School for the Deaf, which uses ASL, as opposed to our local oral school. Do you realize that many, many hearing parents don't sign with their deaf children? That schools exist that ban the use of sign, saying that it will inhibit the child's ability to acquire spoken English?

There have been a couple of books/documentaries that have been especially informative to me in the last few months. The first is a book titled, Train Go Sorry: Inside a Deaf World, by Leah Hager Cohen, given to me by the wonderful YelloCello, to whom I will always be indebted. "Train, go, sorry" is an ASL expression best translated into English as "missed the boat," a compelling metaphor as the author, who is hearing, weaves together different stories of students at a school for the deaf in New York, her own experience as the granddaughter of deaf grandparents and the daughter of the superintendent of the school and their stories, and her own fascination and journey with ASL and deaf culture. Through these memoirs she introduces many of the different issues and facets that created and challenge deaf culture in America. And she is very good writer; it was a delight to read!

One of the issues that brought a lot of other issues to a head was that of cochlear implants. With a cochlear implant, a person who is profoundly deaf can learn how to hear well enough to function almost as much as a hearing person. And the younger a person is implanted, the more like a hearing person the child is in his acquisition of spoken language. The cochlear implant challenges the need for sign language like nothing else before. And the language is a building block for the culture.

Cohen writes:

To members of the deaf community, who, without regrets or apologies, regard deafness as a culture, the implant is an indictment and a threat. Imagine coming up with a "cure" for any other cultural minority or oppressed group--African Americans, say, or women, or Jewish people. Most hearing people find this analogy strained. After all, deafness is a handicap. No one could disagree that a person's life would be made easier if she could be cured of deafness. But couldn't we say the same thing about black people and women and Jews? In our society, isn't it more convenient to be white and male and Christian? Isn't life generally easier for members of the dominant culture?

Her words are thought-provoking. And provide an interesting tandem to the well-known documentary (wh. some of you have likely seen) called Sound and Fury, about one extended family. There are two main brothers whose parents are hearing. One of the brothers is deaf, and he married a deaf woman, and they have three deaf children. They are a Deaf Family. The other brother is hearing and he married a hearing woman of deaf parents; they have twins one of whom is deaf. They immediately decide to implant their deaf infant, a decision applauded by the hearing grandparents and questioned by the deaf grandparents. Around the same time the oldest daughter of the deaf family, who is about five, starts asking for a cochlear implant. Her deaf parents were a little taken aback, but explore the options, finally deciding not to implant her, much to the dismay of her hearing grandparents. To be honest, this Italian family from Long Island was a little too full of drama for me. The hearing grandparents were oppressive; the hearing brother and father of the twin and his wife were melodramatic; and the confusion and hurt in the deaf family was palpable.

After watching the documentary, Chris and I had a lot of sympathy for the deaf family. For one, their parents were incredibly oppressive and histrionic, accusing them of abusing their daughter because they decided not to get an implant. Their decision made a lot of sense for their family's needs. And their concerns were real. They met a little girl about the same age as their daughter and her hearing family. She was implanted as an infant, and they treated her like a hearing child. She didn't even know she was deaf!! and when she saw the deaf family signing she asked her parents "what's that?" (A follow-up documentary, though, in the last couple of years, reveals that the deaf family has gotten implants and rifts created at the time of the initial debate seem to have been healed some. I haven't seen this follow-up, but owuld like to)

The cochlear implant has been foremost in our minds about Ellis, since he is an ideal candidate. He is profoundly deaf; his hearing aids provide little help; he is capable of grasping language concepts; he is under two years of age; and, as we recently found out the results of his MRI, he is physiologically sound--no abnormalities in his inner ear/cochlea.

It has been a tortuous decision process to go down this path. As we have come to love ASL and deaf culture and have met and become friends with many successful deaf adults, we asked ourselves, "does he truly need this? is it worth subjecting our perfectly healthy child to surgery?!" But we have decided to go ahead and proceed. I think it will move quickly once we figure out the state medical assistance tangle of information and bureaucracy. We think that it will open more doors to him in the long run, offer more choices to him. The opinions of the Train Go Sorry and Sound and Fury are imbedded in their time. Deaf culture is changing, and, hopefully, will withstand the tide of the new technology.

In light of this, we feel deeply the burden of responsibility the weighs on us. Of continuing to sign with him, to provide him access to deaf culture, to create a home environment that will be bilingual and bicultural. If we really mean to offer him choices, we have the responsibility to equip him as a Deaf person, as well as providing him access to sound. He can always take off a cochlear implant later in life; but he can never put it on in the peculiarly advantageous way of implanting a child under two years of age.

And so when I read the post by this adoptive mother regarding the shaping of her black daughter's identity, it resonated with my thoughts of late.

Posted by at 11:53 PM | Permalink | Comments (10) | TrackBacks (0)

In the past month, Ellis has really gotten the hang of signing. It's been really exciting to see things click in his brain. Right now, he regularly does "more," "all done/finished," "no," and "sleep" and the letter "F" handshape (?). With prompting, he can also do "eat" and "bath". He's on the cusp of "mommy," "daddy," and "ball". He is responding to our signs, too. Like he'll stop what he's doing when we sign "no". It's really exciting to be communicating like this!

He did the cutest thing last week. We were playing in his room, and all of a sudden, he crawled over to his crib, reached through the bars, patted the matress (like I'm always doing to get him to lie down), looked at me, and signed sleep!! (Not that he wanted to go to sleep, mind you. He just indicated that was the activity of that location.)

Today I caught it on video!

Posted by at 04:49 PM | Permalink | Comments (11) | TrackBacks (0)

I have such lame titles for my entries. I hate titles. Oh well.

Well, anyway, yesterday turned out alright. My mom couldn't come after all. After thinking about it, we decided to drive. It worked out that Chris could drive to the hospital and then take the train to where he needed to go. I was glad we did it that way, because Ellis was so loopy when we were done.

The most difficult part of the MRI is the sedation. Not eating beforehand and all. Ellis actually did pretty well. He had a good morning nap, and then we were ready to go. Being distracted with traveling helped.

When we got there his vitals were taken and then I got him dressed in the hospital purple baby pajamas, and they gave him the sedation stuff orally, wh. was pretty rough because the stuff tasted nasty. Poor guy. And I rocked him until he went to sleep.

I couldn't go in with him, because they have to keep a pretty controlled environment. So I was left with a little time on my hands, and no book!! I never carry a book around anymore, because I'm always busy with Ellis. How I wished I had brought my book! I'm in the middle of Oliver Twist, and it would've been prime reading time. So I got some coffee and chilled in the waiting room, listening to and participating in small talk between parents.

He was done shortly, because they only had to get a scan of the temporal bones (the ears). And then they let him sleep off his sedation. Another hour! (Book, where art thou!?) The nurse asked if I wanted a magazine, but the only ones she could find were some kind of Women's Weekly thing and Ebony. I looked at them both for awhile. Made a few phone calls, and then my loopy boy woke up.

He was all wobbly coming off the sedation. I nursed him right away, dressed him, and then fed him some applesauce. He looked drunk and couldn't hold his head up. So funny. When we brought him home, I had to carry him around for the rest of the evening, because when we set him down, he went plop onto the floor.

We had a baby shower here last night, so I helped to clean up with Ellis on my hip. A bit too tired for the shower, but that was a nice time, too.

So the day turned out alright. The traffic wasn't too bad. I'll probably still take the train for regular visits, but it's nice to know that driving isn't too awful. That'll probably be the most difficult visit until (if) he has the actual cochlear implant surgery. Don't know when that will be yet, since we are still at the beginning stages of getting all the tests done.

Posted by at 10:51 AM | Permalink | Comments (4) | TrackBacks (0)

..is that as you get older, you get busier and have more responsibilities, yet you have less energy. Blah.

Tomorrow I'm taking Ellis for an MRI of the temporal bones. They have to check the anatomy of the ear before cochlear implants. Chris was going to go with me, but he has an interview at a placement agency. Thankfully, my mom can go with me, because this time I've overwhelmed at the prospect of another trip to the hospital. It'll be the fourth time this month! He'll have to be sedated for the MRI, which means no food for 6 hours in advance. Now, who wants to take the Wiggliest One-Year Old in the World on a 1/2 hr regional rail ride when he's teething and hasn't had any food? Meanwhile, wrestling stroller around the train, and it will likely be pouring rain. And when Ellis comes off his sedaiton, he'll likely be loopy. Loopy One-Year-Old. And I'm fighting some kind of bug. Thanks, thanks, thanks to my wonderful mother dear who will get to share this burden with me.

I've been pretty cool with all the hospital stuff. Ellis is usually a pretty good trooper, and the past couple of times, we've been able to make it a fun outing with picnic afterwards. But I'm a bit more worried about tomorrow. It's a bigger test, a bigger trip. If you think of us, say a prayer.

But now I must go to the Ultimate Act of Love, that is hemming my hubby's pants for his interview tomorrow. (Hemming is like My Least Favorite Thing EVER!)

Posted by at 10:36 PM | Permalink | Comments (3) | TrackBacks (0)

The Early Intervention services we get for Ellis are really great. It's wonderful that the county will provide all that he needs to give him a good start. Every other week a woman comes from a local School for the Deaf, and she has been wonderful, bringing helpful resources, giving us good ideas, and just talking with us, as we begin to navigate this new world of the deaf.

But then there is the office who coordinates it all, at Early Intervention headquarters. They came out for the initial visit, and we devised a service plan based on what we wanted to happen for Ellis, which focuses primarily on his communication development. They came yesterday for the six month review of this plan.

Can I just vent? the Early Intervention HQ is so annoying! First, the review was supposed to happen in April. So about ten days into the month, they call me asking for this to be set up, and I'm like Hello! I'm in Louisiana for the rest of the month!. Weeks went by between phone calls, because our Service Coordinator didn't coordinate anything! I was calling our teacher trying to figure out good times, trying to find good times for, and trying to find good times for the coordinator. The teacher (I'll just call her S), was like hello! isn't that the coordinator's job? why is she leaving you to do it?. So anyway, the beginning of June, yesterday, we finally had this six month (now eight) review.

I don't really like our coordinator to begin with. I don't really know how to describe her, but it's like she has no imagination, a flat personality; the type of person who you have to be careful not to use large vocabulary words around. The most annoying part is that coordinators are essentially paper pushers who possess the keys of the system, so they treat us, the family, as an element to be fit into the system. If you try to talk to them outside their little notebook, you may as well be speaking another language, because they cannot think outside the box. Our family is outside the box. We're just outside the box kind of people.

I love our teacher S, because she gets us.

Before the meeting, I took some time to write down our desires/objectives whatever their language calls them, and how I thought they could best meet our needs given Ellis's particular situation. I knew I would have difficulty getting a word in during their visit, so I wanted our desires to be as clearly articulated as possible. S was thrilled with what I had written, the Service Coordinators put it in their files and forgot about them. Couldn't they have filled their forms out based on what I had written? Is it just too outside the box?

Deafness gets lumped into Special Needs for service provision. Well, it is a kind of special need, but it is different from needs, such as autism or down's syndrome. It is low incidence, as S put it. The main need that needs to be met with a deaf child is communication.

Communication is a social, with another language comes another culture. Meeting Ellis's needs not only means that we provide him means of communication in ASL and English, but that we give him access to the cultures both languages live in, deaf culture and hearing culture. Whether or not you thing loss of hearing is enough basis for another culture is irrelevant, because it exists, and has been the source of much encouragement and happiness for thousands of deaf people in this country. Why wouldn't I want my son to have that? But even more I don't want his deafness to be a source of alienation from us, his hearing parents.

We want to be part of his early experiences with deaf culture, so that he knows we'll always be part of his life.* So I asked the intervention people to include a center-based activity at the deaf school as part of his Service Plan. After all, communication is social, and Ellis's services are all about communication. Whenever we do go to the school for the random occasion, Ellis loves being there. He loves watching people signing (something we can't provide very much of, though we're learning). He just lights up whenever we're at the school. It makes sense to include that time in our service plan.

Well, we were shut down so fast I didn't even see it coming. The Service Coordinators stated firmly, only home-based services allowed, period, because the home is the natural environment. period. This is where it is difficult to include Deafness with other special needs, because it is unique. There's a real sense, where being with other deaf people IS a natural environment. There's different communication happening. S tried to open channels to at least talk about it with the Service Coordinators, but they absolutely refused to talk about. It's outside the box. It was frustrating and demeaning. We're smart people, you know. Anyway, when Service Coordinators left, we and S all breathed a sigh of relief. She said that there was more to it than they were letting on and will help us to figure out what to do to appeal it. I'm not really keen on being a trailblazer. But Ellis really loves being there. Someone is signing to him the minute we walk in the door. He gets so excited. I mean, it's way better than his DVD.

I'm interested in studying more about communication and culture in general and how much they impact eachother.

I need to get moving, though. We're off to Lancaster for my little sister's high school graduation. Woohoo!

*One thing we discovered when we went to a cochlear implant info meeting at the school is that implants don't have to change the culture. People can hear better with them, but also continue to enjoy the rich communication/culture ASL brings them. We like that. So if Ellis gets an implant, this cultural aspect doesn't get mooted.

Posted by at 09:42 AM | Permalink | Comments (4) | TrackBacks (0)

Our early intervention has taken a new twist. So far a teach comes every other week from the Pennsylvania School for the Deaf. She brings resources, information, and conversation. In between, we watch Signing Time! and read.

PSD is trying to start a new facet to the early intervention services, pairing up the family with a deaf mentor. Yesterday, she brought along a high school teacher from PSD, who has been deaf from age two caused by spinal meningitis. His hearing loss is very similar to Ellis's in terms of what he can't hear and how aids help. He doesn't wear his aids anymore; he said that when he went to college at Gallaudet University, he found the speech of deaf people annoying. He communicates through ASL. Our early intervention lady interpreted for us, since we are nowhere near fluid enough with ASL.

We're really excited about having him come. We really liked him. He is about our age and in many ways carries on a life with similar interests. It's incredibly helpful to be able to talk to someone who can help us understand what life is like from the perspective of our son. I hope that as Ellis gets older and is more social, we'll begin to have a social life that includes the deaf community, but for now, it is helpful to have this interaction to prepare us for Ellis's growth as a communicating, social child.

Deaf Mentor told us a little bit about how he grew up, education, etc. He went to Gallaudet and majored in history. A few years later he went back and got a master's in deaf education, which he recently completed, just before coming to teach at PSD.

Through the course of the conversation, he told us about student protests that are currently going on at Gallaudet. Apparently, a new president has recently been elected, and the students and faculty are not happy with the choice. I don't really understand all the issues being discussed, but I gather that the central theme is that they feel that deaf culture is being challenged. They see in the new president a compromise between the hearing world and the deaf community that undermines their deaf identity. (read more news here and here. ) The president-elect is deaf, but grew up speaking, and didn't learn ASL, the primary language at Gallaudet, until her twenties.

As better technologies and treatments are developed for those with hearing loss, what it means to be deaf is changing. Deaf culture is fiercely guarded and loved by its members, holding an identity almost as strong as racial identity. I hope that they will find a leader that can preserve this distinctness while taking into consideration new developments. Sitting there with Deaf Mentor, I was enthralled as his hands moved and how he engaged with us. ASL is a bonding language as the whole body speaks.

Reading and talking briefly about what is going on at Gallaudet, I'm also struck at the institutional politics of it all. This isn't the first time such a protest has occurred. In the '80s a student protest got the university's first deaf president elected, ousting the hearing president-elect. Though this protest is different, the issues much more nuanced, it is thought-provoking to see what kind of power a student body can wield upon a university. Even the faculty passed a no confidence vote. There is such unity of what is perceived as the university's goals, mission, and identity as to judge that a president does not fit these. It is inspiring.

Posted by at 10:20 PM | Permalink | Comments (3) | TrackBacks (0)

Now that Ellis has a hearing aid, I've been working on his musical education, since now I'm not sure he got anything when I was teaching music appreciation when I was pregnant. I'm blaring music for him to listen to, just in case he can pick up any sound. We've been listening to his CD of Bach's Goldberg Variations. Today I put on Beethoven's Piano Concerto No. 5 "Emperor". After all he and Beethoven have something in common. At the opening sforzando chord, which was really loud, since the volume is way up on the stereo, he looked at me like what was that? Maybe he could just feel the vibrations, but I wonder if he can pick up a little. Sometimes he looks like perhaps he's listening. It's hard to tell. I'll just keep playing music.

Posted by at 01:27 PM | Permalink | Comments (1) | TrackBacks (0)

Yesterday morning as we were waiting on the train platform to go down to University City, a young man wearing hearing aids came up to Ellis and cooed calling to his friend, "look at this cute baby!!" His speech was difficult to understand, and he signed with his friend, so I knew he was deaf. I told him Ellis was deaf, and we talked a little. I used the one or two signs I knew as best I could. But I don't really know enough to communicate effectively, nevertheless we had a nice short visit with this friendly guy.

Ellis is such a good kid at the hospital. I'm so proud of him all the time. He's so patient as they poke and prod his ears. He waits patiently even though he is often so tired, as it's impossible to accomodate nap time.

We left with a cute loaner aid in his left ear, which we can use as we sort of insurance information to get him his own aids. He's very calm as I put it in his ear and hasn't tried to tug at it or anything.

I still don't know if he's able to pick up much with it. It's not turning on a light bulb or anything. If there's anything, it'll probably dawn on him gradually what sound is.

In the meantime, I have his CD of Bach's Goldberg Variations blaring as loud as I can stand it. Hey, he can at least feel the vibrations, if nothing else.

Posted by at 11:42 AM | Permalink | Comments (4) | TrackBacks (0)

Thursday and Friday I packed up Ellis in the backpack carrier, packed up my bookbag, parked my car, and boarded the train. We were going to Children's Hospital of Philadelphia (CHOP) for more hearing tests. He hasn't had any tests since late August when he was two and a half months old, and those tests were at Temple Univ Children's Hospital. The next appointment I could get for Ellis is in February, and feeling the need to get a clearer diagnosis and to get him into hearing aids, as we have now entered the phase of critical language development time, we decided to turn elsewhere. CHOP is run by a private university, and it shows. I had a much better experience with them than at Temple, run by the state-funded university. Sad, but true. I called CHOP for an appointment and got one a week later.

So Thursday we went for a Behavioural Hearing Test. Ellis sat on my lap in a booth. They played sounds and tried to condition him to associate sounds with a chicken that lit up and moved when they pressed a button. They first started by playing sounds over the big speakers in the booth, but then moved to putting a little microphone sort of thing behind his ear and later, little headphones that inserted into his ear. The audiologist on the other side of the glass played sounds and the audiologist in with us reported: "eye shift", "slight eye shift", "no response", "eye shift". It was amazing to me that she could tell which eye shifts were response to sound. The result of this test is that Ellis has some residual hearing in his left ear. He could hear sounds at about 90 decibels--about the sound of a jackhammer. So even though there didn't seem to be response in his right ear, we are so thankful that there's something!

The next step was to get an ABR (auditory brainstem response) test. Normally you have to schedule this weeks in advance, because it is kind of an involved test. When we went to schedule one, they had an opening the next day! Yay. ABR's need to be done when the person is at rest. Ellis had one done this summer, and I just nursed him to sleep and that was fine. Now he is too old for that and needed to be sedated. It turned out that this was the most difficult part of the whole test, because he could not eat for 6 hours before the sedation.

Our appointment was at 11 am, and they said that the last time he could eat was 4am. Even though he wakes up a lot at night to nurse, I set the alarm to make sure he could get a good feeding at the latest possible moment. Ellis and I boarded the 8.59 R1 and got off at University City. We arrived at CHOP around 10, and knowing that he hadn't eaten, they processed fairly quickly, but it was still involved. We had to be cleared by an ENT (ear nose throat doctor), which was no problem. And then we went over to the sedation unit. Everyone was really nice and helped me carry my things and cooed at the baby. Unfortunately Daddy couldn't be with us, because of the last minute appointment, and his being a teacher means that he just can't take off, you know? So I was really grateful that everyone was so nice and helpful.

By this time it was nearly noon. Ellis hadn't eaten since 4 am, and he hadn't slept since he woke up around 6.30 except for a fifteen min snooze on the train. I can't imagine how miserable he must've felt. And I was so stinkin' proud of my kid, because he barely fussed!!! He could take his mind off how he was feeling by playing with the couple of toys I brought along or playing with my face. By the very end, I could tell it was getting harder and harder. All I could do was just hold him and coax him to suck his pacifier. Then they gave him the sedation liquid orally (thankfully didn't have to use an IV), and he drifted off into blessed sleep.

During an ABR they attached electrode thingys around the head, play varying levels of frequencies, and monitor the brain's response. In short, they are testing how well the ear talks to the brain.

There are different kinds of hearing loss. A conductive loss is hearing loss caused by something (like fluid) that stops sounds from getting through the outer or middle ear. A sensorineural loss is hearing loss that occurs when there is a problem in the way the inner ear or hearing nerve works.

There are also different levels of hearing loss. I asked the audiologist how they quantified hearing loss. She said it's more like catgorizing the loss on a spectrum than actual percentages. The spectrum goes from mild to moderate to severe to profound.

The ABR took almost an hour, and afterwards while Ellis slept off his sedation, she went over her observations with me. Finally, we have answers, something tangible. She was able to diagnose his hearing loss as severe to profound, finding some response in the left ear at around 85 to 90 decibels, adding the caveat that the ABR can only go up to 90 decibels, perhaps the right ear could pick up sounds much louder than they were able to test, but for all intents and purpose in the moment, the right ear gave no response. She was also able to confirm that his loss was sensorineural, which is permanent.

The audiologist was eager to get him into hearing aids as soon as possible, so while he was still asleep, she took ear molds, squirting this soft substance that quickly hardened into his ear. In a couple of weeks, we can go back and get him set up with loaner aids, while we figure out insurance in order to buy some. The state has medical assistance that will cover what our insurance doesn't cover for the aids; so even though it's complicated, I think it'll work out fine.

Because his loss is so great, he may also be a candidate for cochlear implants, providing that other conditions are met (e.g. that the auditory nerve is there or that the cochlea is shaped right). So we'll set up informational meetings to proceed in that direction, too.

A children's hospital is not a happy place. Walking through the halls, I passed parents with worry lines etched into their faces, children in strollers clutching blankets breathing through a tube. Stars in the floor tiles and rainbows painted on the wall try to comfort the passers-by, but it is a place full of kids with really big boo-boos. Though I was sad for the kids who face such huge physical challenges and pain, I walked out of there feeling so thankful that the only thing wrong with Ellis is his hearing, and we can work with it! He is happy and healthy, bright, responsive, and expressive. We just can't believe how much we love him!

Posted by at 12:39 PM | Permalink | Comments (17) | TrackBacks (0)

Ellis watches his DVD
Originally uploaded by Diberjones.

Ellis recently discovered the joy of watching the tube. I can plop him in the exersaucer, turn it on, and have 20 glorious minutes. At least it's educational! The only thing I have to put on for him are these brilliant DVDs teaching kids sign language: Signing Time. They're lowkey, have cute fun little songs, and lots of visual reinforcement of the words. Each volume focuses on a different set of vocabulary. Each time a word is introduced the two main kids sign it, an adult signs it, there's pictures of it (like "apple"), lots of other kids sign it, and they display the written word, too. I love it! We've borrowed vols 2 and 3 from the Early Intervention lady, but I've already ordered vols 1 and 2 for Ellis from Amazon.

It's very easy to learn the signs, because there's so much repetition, so we're picking up the words, too. It makes me feel good that I string a whole bunch of words together to form a concept. I will say that the only thing that really bugs me about ASL is the lack of nuance in verbs. Subjunctive? Gerunds? Future perfect? The only thing left for me to do there is to spell out the word. Hmmm. Right now we're sort of viewing sign language as a starting point, anyway, so we'll see.

At almost 7 months, Ellis is a bit young to sign back yet, but he definitely is clued into the fact that we're doing something important with our hands. He watches keenly, shifting his gaze from hand to hand to our face. I can't wait 'til he starts to try, too.

Posted by at 10:55 AM | Permalink | Comments (6) | TrackBacks (0)

Our Early Intervention lady is letting us borrow a CDROM full of some basic information and with a great resources section. I wanted a chance to "bookmark" the resources on my blog, so that I just click on the websites later.

Continue reading "Resources Galore" »

Posted by at 03:14 PM | Permalink | Comments (0) | TrackBacks (0)

Very helpful online signing dictionary. What I like are the little movies demonstrating the sign.

The website seems to be designed for teaching children signing as a step along the process of communication, not necessarily for specifically deaf children. But it's very handy to have a place to quickly look up a sign.

UPDATE: Thanks, Kristen, for this link. An ASL dictionary complete with little movies of the signs. Sure beats staring a pictures and arrows and wondering what in the world you're supposed to do.

Posted by at 07:06 PM | Permalink | Comments (4) | TrackBacks (0)

Yesterday we were visited by a team to evaluate Ellis for early intervention services. They were really nice, down-to-earth, friendly, helpful people. (I was so glad, having no experience with social services folks and having a general suspect for the social sciences). So they accepted him into their program. A teacher, physical therapist, and speech therapist/audiologist were on the evaluation team along with the services coordinator.

Except for anything to do with hearing, they said he was doing marvelously. The PT was really pleased with his motor skills, and they all remarked how well he was taking in things visually, which is good, because he is essentially compensating for hearing with seeing. So they're setting us up with a teacher for the hearing impaired to come every other week. (Provided by the school district at no cost to us! Your tax dollars at work, folks.) Behaviourly they found no responses to sounds at all. I hope he has some residual hearing! It seems more and more that he may not. Even 2% hearing is a lot to work with. Anyway, the meeting was good, and they're putting us in the way of lots of information, which is more helpful.

In some ways, I feel free to start learning sign language now. I'm not sure how to express this, but before I felt like I wasn't sure if I should or not. But now I feel like it's okay. We want him to have everything method of communication of available...work on speaking and using any residual hearing he might have and have sign language to use. Some parents are really against their deaf children using sign language, which I don't really get, because it also denies them access to the deaf community. (To me, that's like adopting an African-American baby and then denying his/her cultural heritage.) And though I want Ellis to be able function well and independently in the hearing world, I want him to have access to the resources and encouragement the deaf community could provide, too. I feel encouraged.

Posted by at 12:31 PM | Permalink | Comments (11) | TrackBacks (0)

A little while ago, academic blogger Laura suggested that bloggers write about their kids with disabilities, in hopes of raising awareness. I'm interested in reading what others have to say, since most of the first-hand accounts that I've come across on the internet are the sort of emotionally hysterical, made for TV movie kind of stuff, which not exactly reflective or helpful. Check back on 11D for links if you want to read more. I've been meaning to sit down and work through some of my thoughts, and this provides me a good opportunity to do so. This post isn't scientific or political, rather personal.

Ellis is only three months old, so in a sense this post is more about me than him. We are only at the beginning of the journey as Ellis's parents. We've received the diagnosis of "probably moderate-to-severe" hearing loss only weeks ago. From the beginning, I feel calm about it. But since we've had the tests and I've begun to read, I'm more confused.

First, I'm not really sure what his diagnosis is. The most recent test was tracking the brainwaves' responses to very frequencies, through the whole range of pitches, and there was no response at any level. So, I know his diagnosis is "no response." What I heard the audiologist say was, "wait and see before we can determine what the level of hearing loss is." Chris seems to remember him saying "probably moderate to severe" (on a scale from light to moderate to severe to profound). I can't imagine a "no response" resulting in only minimal hearing loss, so it's probably more. "Moderate to severe" sounds safe, like something we can work with or bad, but not the worst. I just hope there's some residual hearing.

Google is a wonderful invention. Vast amounts of information available; just enter and click. In order to sort out some of my confusion, I've googled and googled. (Don't you love how google is a noun and a verb?) I've learned a little more about hearing loss, the nature of the testing, and what's available out there to help him, but we've only barely touched the tip of what there is to know.

The most unnerving thing out there is reading other people's stories. They are always so black-and-white. They have a definitive diagnosis; a mother goes into the next room and sobs; and the child is fitted for hearing aids right then and there. I end up second-guessing our situation. Should we have a clearer diagnosis? Should Ellis have hearing aids now? Should we be doing more? Is the sit-back-and-wait advice from the audiologist okay? Should I feel more sad?

Next week a team from the Early Intervention program in our county is coming to the house to evaluate Ellis for the first time. I've been hanging on to waiting for that. I hope they'll give me all the answers to the questions I don't know how to ask. (I'm just glad we have some resources to choose from. Imagine if we were still living in New Orleans! aack!)

Emotionally, I've been calm about it all. Sure, sometimes I'm disappointed because I wonder if he'll be able to hear this or that thing, especially since music is my life. (And don't give me the 'Beethoven was deaf' line, because he wasn't born deaf. He had to hear the notes first before he could hear them in his head.) Over the month since his last test, I've gone from saying that he has hearing loss to admitting that he is deaf. They feel a lot different. And maybe hearing loss is more medically correct. Announcing to someone that our son is deaf just feels more final. This admission has probably been the biggest step for me. Chris is proud of Ellis's deafness and has embraced it from the beginning, whereas I think I secretly hope it will go away. It isn't something to be scared of, and Chris's attitude has helped me.

I don't like it when other people around us offer well-meaning comments. People offer stories about so-and-so's child who was given a bleak health diagnosis concerning this or that, and then in a year it had just resolved itself. While it's nice to know that it can happen, and it has for some people, that doesn't mean that it will happen for Ellis. God has created him to the child He wants him to be, and if that is deaf, then I will embrace it, and if later He decides to change that, while I will embrace it then, but not now. Most people around us, though, are very supportive. The old ladies at church are especially kind, persisting to get me into contact with another person who has a deaf child or sibling, offering encouragement and prayers.

Most of the time I kind of tend to forget about it. My googling comes in spurts, but usually we're just going about our day. I talk to him and sing to him. When he catches my eyes and I start smiling and talking to him, he always lights up and starts cooing back. Does he hear me? The other day when I was babbling to him, I kept my lips moving but stopped making sound. It didn't make a difference in his response. He was stilling giggling and cooing, which is so cute!

I still don't see him responding to sounds as he should. No startling. He should be turning his head towards sounds about now, and that's not happening. No distraction while he's nursing. No stopping in response to sound.

There are some positive things. The first is that we never have to worry about waking the sleeping baby with noise. We can watch a movie in the same room, talk in normal voices, drop loud things, blow dry my hair; it's great! When I'm at someone's house, I don't have to go find him a quiet corner to nap, just plop him down on a blanket in the middle of where we all are. The second is that he is our first kid, so we don't have to worry about the emotional well-being of older kids as they adjust to all the attention we'll be having to give Ellis in these early years, and I imagine it will be easier to add child(ren?) to Ellis rather than him to them.

I really don't have anything knowledgeable to offer at this point. I am at the beginning. I only have questions. I don't know how Ellis will grow up yet. Right now I'm enjoying this time we have when his needs are so basic, because soon, soon, soon, our lives will change so much more. So I just offer my hodge-podged thoughts for the moment, and that's all I have time for, because now he's waking up.

Posted by at 11:20 AM | Permalink | Comments (11) | TrackBacks (0)

I really appreciate all the encouraging comments from folks.

I realized that as I writing last night that perhaps my attitude seemed a bit cavalier. I don't really know. I did want to say that I truly am feeling pretty calm about everything. Believe me, I'm not one to deny myself tears, but I really am doing fine. A little apprehensive about how to proceed and all we'll need to do, sorting through it all, but overall fine.

I think it's partly a combination of the Lord's giving me calm and the fact that really when I look at him, I don't see him not hearing yet (except for the fact that he doesn't startle), so perhaps it hasn't really hit me. (I do feel a little sad that he probably won't be able to enjoy music like I do.) Maybe I'm in denial. Maybe I keep hoping that as he gets bigger and grows and further develops that his hearing will resolve itself. I don't know. I just keep thinking about the Dubles and how they lost their little boy, and I have a strong, healthy boy. So there's a lot to be thankful for.

There is also a sense in which I don't really know what to mourn over yet, because there is just not a lot defined with regards to the nature of his hearing loss and how much hearing assistance (whether in the form of hearing aids or even a cochlear implant) will be able to help him. Maybe with assistance he can have a normal hearing life. There are just still so many unknowns.

Posted by at 09:37 PM | Permalink | Comments (0) | TrackBacks (0)

Today we had the next test for Ellis's hearing. The tests before were just hearing screens to determine on a black and white level whether or not he has hearing loss. On the test today they hooked up electrodes to his head and inserted these things in his ear that they played different frequencies on. They were testing his brainwaves for response. The doctor played through a range of frequencies to see how Ellis would respond at each pitch. For instance, he may respond to higher pitches but not lower ones. Well, Ellis didn't respond to any of them.

At Ellis's age, a complete no-response still doesn't tell them a whole lot, but it probably rules out the slight-hearing-impaired category. As he grows older and they repeat tests and see how he develops behaviorly to sound, they'll get a better understanding on the extent of his hearing loss. In the meantime, there is an extensive early intervention program in our school system that we can take advantage of even now as the seeds for his communication skills are being planted.

There are two basic types of hearing loss: conductive, which has to do with outer and middle ear and could be due to something as simple as fluid in the ear, and sensorineural, which is hearing loss caused by damage to the sensory cells and/or nerve fibers of the inner ear. It appears that Ellis most likely has the latter.

We're still really calm about it all. We'll do everything we can for him to help him with this particular challenge, of course, but this is not a tragedy. What would be a tragedy is if Ellis did not turn to Christ. We pray that God will bring His little child to Himself, using any unique challenges He's given him for his sanctification. And in that respect, Ellis is in no more need of prayer than any other covenant child.

We would appreciate prayers as we get to know what we can do for him so that we can help him the very best we can. I will say that the thing that overwhelms me the most is the possibility that we might have to learn sign language. That always has been a really intimidating language to me. I mean it's not like it has Latin roots or anything.

Posted by at 04:55 PM | Permalink | Comments (16) | TrackBacks (0)

When he was born, Ellis did not pass the hearing screen they give newborns in the hospital. They tried it twice, and he failed twice. I've been watching him. He doesn't seem to be completely unresponsive to noises, but at the same time he doesn't seem to respond the way he should, for instance he doesn't really startle at sharp noise, like if you clap by his head or slam a door.

We had a follow-up appointment with an audiologist today. They gave him the same hearing screen again, and he failed again. So then they went to the next level of testing, where they're testing brainwaves. It's kind of freaky seeing little electrode thingys attached to your kid's head. He failed that one, too.

Now these tests can't really tell much except a yes or no to the question of hearing loss. Even if there's the littlest bit, it will result in a fail. So, since he failed these tests, the answer is yes he has some hearing loss. The next level of testing is how much. It could be very slight or medium or severe. Next week we'll take him in for that test.

I'm not really worried, at this point. There's not a whole lot we know yet. And at every level of impairment there's help, all the way down to a cochlear implant for the most severe hearing loss. Of course, I want Ellis to be perfectly normal, but at the same time, I know that God has made him the child He wants him to be. We're praying that God will help us be good parents and will give grace to Ellis to help him with this challenge.

Posted by at 01:39 PM | Permalink | Comments (11) | TrackBacks (0)