asteroid B612

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).

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.

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!

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.