asteroid B612

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

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

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

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

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

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. ;-)

When I started teaching my son ASL, learning it as fast as I could teach him, I knew that someday, he would go off to deaf school and come home and teach me signs. I always wondered what that would be like. I'm sure every parent goes through this with their kid starts learning things that the someone else other than the parent teaches them.

Well, today I lived that experience for the first time. Ellis came home with a sign I didn't know (I had seen it, but couldn't remember it): Chocolate. He pointed to the big box of hot chocolate mix that I got at Costco today and asked to partake in its delights. I blame school. They did a unit on the book _The Snowy Day_, which included sampling hot chocolate. We don't normally have chocolate around here, so I just haven't really had occasion to use the sign. But my boy taught me the sign for "chocolate" today. Why couldn't it have been "broccoli"?

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.

Be sure that your volume is on!!

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