asteroid B612

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

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

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

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

Ellis's CI was activated.

I hope to write more later.

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.

A year ago today was Ellis's CI surgery. It's been a busy year, and we're starting to find our pace with it. It's hard to think about it too much, though...the surgery, that is, so I won't. I can't believe it's been a year already.

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.

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. ;-)

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!

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.

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.