Wednesday, December 30, 2009

The last few months....

Okay, so I missed that last self-imposed deadline for posting, but here I am.  Also, I can't seem to find September's calendar right now.  So in lieu of that, I'll start off with a gratuitously cute picture of Ben sleeping with his posterior hoisted high in the air.  He does that sometimes.

And here are October and November:



Let's see.  Ben seems to have fed a goat and played with finger paints on October 10th.  Oh, I guess October 6th was our inaugural Signing Time Playgroup.  Those have been great -- friends large and small join us for play, signing, and a Signing Time DVD.  On November 3rd Nolan and Matthew came, and Nolan's blue swirly ear molds were a hit with Ben (that is an attempt to draw Nolan's hearing aid and ear mold).  Both Ben and his beloved Curious George doll got seasonal flu vaccines on October 8th, and were rewarded with matching bandaids.  Grandma and Grandpa came on the 16th, in time for Ben's 2nd birthday on the 19th.  October 24th marks my first attempt (among many) to render our local college's clock tower, which Ben has taken rather a liking to.  Halloween is captured by a reference to "Whoopee once, whoopee twice, whoopee chicken soup with rice," from Maurice Sendak's book Chicken Soup with Rice, one of Ben's favorites.

The Yankees put an end to the Phillies' World Series hopes on November 4th, much to Ben's and his father's delight (Neil is Bronx born and bred), although Ben did develop a fondness for the Philly mascot.  Fall foliage slowly gives way to images of Santa as November progresses.  Ben obtained his first library card on November 20th.  As of the 23rd, Ben's Beatle Obsession was still going strong.  (On our recent flight to Wisconsin, Ben regaled nearby passengers with a Beatles medly, interspersed with such toilet-training hits as "The Tushy Pushy".)  We spent Thanksgiving with Ben's paternal grandparents.  And the monitor tells me that Master Ben is just now waking up from his nap, so I'd better draw this to a close.  December to follow in a few days....



Thursday, December 17, 2009

Hi, remember me?

Yes, I know it's been ages since I've posted anything.  (My mother-in-law has pointed this out several times lately.  Apparently she's getting withdrawal symptoms, and needs a Benny Fix.)  This semester has been absolutely crazy, but I'm very close to the end.  I gave my last final this morning, and while I sat there I finished grading one from earlier in the week.  So I just have two massive piles of final exams to grade, and then compute grades, plus a million other small end-of-semester tasks .... but I promise I'll blog by the weekend at the latest.  Ben has been doing marvelous things in recent weeks, so there is much to report on.  He has also been Very Two lately (his favorite phrase now is "I don't!!!!!").

Friday, November 20, 2009

So much for talking down to him....

Ben's new obsession is the clock tower on the college campus where Neil and I teach. Yesterday I indulged him in a quick clock tower drive-by on our way home from daycare. Here is a tidbit from our dinner conversation, in which Ben recounted this experience to his father:

Ben: We did not hear the bells.
Neil: You're right. Sometimes the bells don't ring for a long time. You would have to wait a long time to hear them.
Ben: They ring every hour, and only once on the half-hour.

Sunday, November 1, 2009

Sheer Brag

I don't have much time right now (those quizzes aren't grading themselves), but I had to share this tidbit: This morning, over breakfast, Ben (a) sang much of "Supercallifrajilistickexpialidotious"* and (b) counted to ten in Turkish**.

* I'm not even going to bother to run spellcheck on this post.
** Fethiye, that one's for you! TeSekillar ederIm! (You can correct my spelling in a comment.)

Tuesday, October 13, 2009

ABCs and Arc Woman

Here's some recent video of Ben, contemplating his favorite painting.

Tuesday, September 29, 2009

Episode Two (More on That Video)

In Episode One, I gave my response to the argument (of sorts) presented in the video for why it is wrong to give young children cochlear implants. As you may recall, I disagreed with this argument.

Now let's put this video in context. First of all, it's nothing new -- just a very effective and graphic repackaging of an old message. There is, for various reasons, great hostility among some in the Deaf community toward cochlear implants in general, and especially toward the idea of implanting young children.

Now, my perspective on cochlear implantation is that it's a fabulous technology that gives my son access to sound, and that access to sound has manifold and tremendous benefits that far outweigh the small amount of risk associated with the surgery and the daily inconveniences of living with the equipment. Even the extraordinary expense is more than compensated for by the savings in special education costs.

Obviously not everyone shares this perspective. One of the common counterclaims is that one does not need sound in order to live a rich, full, successful life. Many Deaf people offer themselves as living proof of this fact. I will argue, and I think they will agree with me, that many aspects of life are a lot easier when you can hear, but as someone pointed out during a recent discussion on cicircle, "easier" does not necessarily mean "better." I know that many deaf/Deaf people feel that some of their best life experiences and lessons are rooted in their deafness, that in fact it has enriched their lives. I respect this, and I hope that Ben has some of those same enriching experiences, despite the fact that he is hearing for many hours of each day. I can see why some people would feel that the expense, risk, and hassle of implantation are not worthwhile, given the fact that there is a viable alternative (namely, growing up Deaf). I don't have a good response to this argument. (Well, I have a response, but it's guaranteed to cause offense, and that's not my goal here.)

Another very common assertion is that hearing parents choose to implant their deaf children because they are too lazy to learn ASL, and that depriving a deaf child of ASL is an evil in itself, aside from the other evils of implantation. I've got a response to this one. The first claim is simply false. I've gone through the experience of implanting my child; I am currently going through the experience of teaching my child ASL; I know which process is harder, and it ain't ASL. We don't implant our children because we're lazy. I disagree with the second claim as well. First of all, depriving a child (any child) of language altogether is evil, but I don't see anything inherently evil in teaching a child one language instead of another. Second of all, I'm not in fact depriving Ben of ASL. I'm doing my best to teach it to him as a second language. The beauty of the CI is that it has made it possible (in fact, fairly easy) for him to learn spoken English (the most common form of communication in our society) in addition to ASL, French, Latin, Klingon, or whatever else he takes a fancy to. In what way is he deprived?

Nevertheless, I have some sympathy to this position as well. As I discussed in an earlier post, many deaf people, especially of an older generation, were subjected to relatively ineffective oral-only education, resulting in great frustration and poor educational outcomes. When they finally encountered ASL, it gave them a new lease on life. Those who were given the opportunity to learn ASL as a primary language generally fared much better. When I exchanged some comments with lagunazurfer, he predicted that Ben will suffer terribly because I am not bringing him up Deaf with ASL, in the same way that many other deaf children (and perhaps lagunazurfer himself) suffered. A charitable interpretation is that he is sincerely concerned about my son's supposedly inevitable suffering.

Also, remember that deaf people have been persecuted at various times throughout history. Under the Nazis, babies and children with congenital disabilities were often taken from their parents and killed through lethal injection or starvation, in order to rid the race of "impurities". A law was passed allowing doctors to perform forced abortions when they believed a fetus had a disability or deformity. Adults with disabilities were forcibly sterilized. There was a Nazi league for the deaf, led by a deaf Nazi, that advocated voluntary sterilization. For awhile, people with disabilities were rounded up and killed en masse in "shower" rooms that were later adapted for mass killings of Jews. Altogether, 200,000 people with disabilities were killed by the Nazis. (You can find more in a Google search. Also, read this article by Mishka Zena, a very influential and thoughtful Deaf blogger, about A.G. Bell's link to Nazi atrocities.)

It's a horrifying history, and it is not hard to understand why this would lead to a certain paranoia toward any attempt to address deafness medically, or more generally to treat it as a defect to be eliminated. I think that with regard to cochlear implantation, it is just that -- paranoia, rather than a rational fear of an actual threat of physical harm or oppression. Nevertheless, I can feel some sympathy on this point as well.

So that's my understanding of the various opposing perspectives. I hope I haven't portrayed them inaccurately. In the end, I am not persuaded. To the contrary, we have never even for a moment regretted our decision to get Ben a CI. Not a day goes by that I am not amazed by and thankful for this technology.

My thoughts on *that* video, Episode One

Well, by now you might have had a chance to watch "My son is deaf, finally!" posted by lagunazurfer on youtube: http://www.youtube.com/watch?v=-YN5Fdz1En0. If you haven't, you should do so before reading on, because I'm going to spoil the ending.

Yup, it's quite a video. It is, in the end, a "prank" -- and not a very funny one. The actor (who I assume is lagunazurfer himself) purports to be a father describing a recent operation to remove his son's cochleas. In the end, he reveals that nothing of the sort happened, and suggests that such an operation is the moral equivalent of cochlear implant surgery, and any outrage we might have felt toward him should be directed toward parents who implant their children.

This video made the rounds at listenup and cicircle recently. It didn't get much discussion at the former; one person wrote in saying that it was a good video, and she obviously agreed with the message. As you can imagine, it provoked a very different reaction on cicircle, which is comprised exclusively of CI families.

It is a good video, in the sense that it is well-made and it has obviously been effective at stirring up emotions and controversy. At first, it seems like a pretty good argument, an argument by analogy. Hearing parents are dismayed to discover that their child is deaf, and they implant him so that he will be "more like them." How is this different from deaf parents surgically altering their child to be more like themselves? Therefore any objections that the viewer might naturally have toward the latter would apply to the former.

I don't think it's a very good analogy, but of course that's premised on the assumption that hearing is a good thing. It's an ability that almost all human beings possess, that in fact many animals possess, and with good reason. There's no doubt that it is far easier to navigate through a difficult and dangerous world when you can hear. In modern society, it is far easier to get an education or a job, buy something, go to the dentist, and in general interact with other human beings if, like them, you can hear. And indeed the blogs and online posts of deaf people are full of complaints (perfectly reasonable and valid ones) about the daily hardships of being deaf in a hearing world. So a safe, effective surgical procedure that restores some measure of the ability to hear is not the same as surgery that takes away that ability.

Another obvious bone to pick with the video's "logic" is the claim that parents should at least wait until a child is of an age to make informed consent before imposing cochlear implant surgery on him or her. The idea is that the child should have a choice. The problem with this is that waiting has the effect of eliminating choice, as Leah explained in a comment to my earlier post. The longer the auditory system goes without stimulation, the less effective the implant is. Children who are implanted in middle childhood or later are often able to make only limited use of the CI, and it always takes years of therapy to make any progress at all. This might still be seen as a successful outcome, depending on the expectations of the family, but it's nothing like the outstanding success that Ben has achieved already, a little over a year post-activation, with almost no therapy to speak of. So waiting until a child is old enough to consent means waiting until learning to hear effectively with a CI is no longer a realistic option. How is this a choice?

As usual, I'm out of time but certainly not out of words; I have much more to say on the subject. I'll save it for a follow-up post, in which I discuss the context and motivation for the video. Suffice it to say for now that I am actually very sympathetic to the Deaf perspective on CIs, in light of the historical and contemporary context, even though I disagree rather vehemently with it and the alarmingly vicious tone some of them take when expressing it.

Saturday, September 26, 2009

Catching Up

It's almost the end of September, and I never got around to putting up the August calendar! Life has been crazy busy lately. So here goes:


Blueberries figured prominently in our lives at the end of July and into August. We made a couple of trips to a local pick-your-own farm, and Ben had a great time. He spent as much time in the pool as he could manage, and ran through the sprinklers on the 20th. He has developed a keen interest in M&M's, as you can see on the 12th and 16th. As of the 27th, we had added "running the bases" to his nightly wear-out routine (a last attempt to burn off some energy before bath time). This involves running vigorously between points such as "ottoman first base" and "Mommy and Daddy's bed second base". On the 28th we must have read If You Give a Pig a Pancake, although not for the first time -- it's been a fan favorite since spring. On the 30th, after several weeks of searching, we managed to find an appropriate Benny-sized chair. I must draw your attention to the 21st because I am inordinately pleased with my rendering (in broad-tipped marker, I remind you) of Mary Poppins. Ben now loves the movie Mary Poppins almost as much as Yellow Submarine. (Tonight in the bath he was singing "Sister Suffragettes".)


Tuesday, September 22, 2009

Interesting video, and Ben's Thoughts on Bodily Emissions

You might want to check out this youtube video:

http://www.youtube.com/watch?v=-YN5Fdz1En0

Make sure you watch it all the way through to the end. I won't comment more about it now, but I'll follow up later after some of you have had a chance to watch it and think about it.

The other day, as Neil was getting Ben up from his nap, Ben announced, "I don't want to poop, I just want to toot, that's the idea." (Ben had in fact pooped, and he was trying to clarify what his original intentions were.) When this was reported to my sister, it turns out that both she and I had the same mental reaction, namely to have a rather graphic reinterpretation of the Arlo Guthrie classic start a continuous loop in our brains.

Perhaps, as in some of Jess' memorable posts, I should've prefaced this with a warning that This Post Discusses Poop.

Monday, September 21, 2009

Thinking of Jennifer

Jennifer's mother has lost her battle with ovarian cancer. Please stop by her blog and offer her comfort.

Friday, September 11, 2009

Excellent post by Peas' Mom

You need to read this post: http://nopeas.blogspot.com/2009/09/dont-read-blogs.html

It captures so well the feelings and challenges of those first few months. And Susannah's comment at the end has some great advice for audiologists -- give out e-mail addresses (not phone numbers), as well as (I'll add) references to listenup and cicircle. Before we can even start to make sense of the medical information, we need support and reassurance, of a concrete kind, in form that we can believe -- meaning from other parents.

Thursday, September 3, 2009

More on Wait Time

My mother (Elsie Wilson) left a great comment after this recent post about the importance of Wait Time. I especially like the "breathing" analogy -- that's particularly true of our hearing loss kids for quite awhile after they first get access to sound.

Monday, August 31, 2009

This really amazing thing that Ben's been doing

Ben can recite the alphabet (usually with several omissions -- he's had a down on N for awhile now). It's pretty cute -- he tries to sing it, but since he can't carry a tune yet, it just comes out as this very soft, whimsical little chant.

Now, I always feel self-conscious about bragging about Ben, and I always manage to overcome that and do it anyway, on the premise that heck, it's my blog, and the whole original purpose of this blog was to brag to the relatives, who can't get enough of that sort of thing. But now I'm really pushing it out there, and I apologize for being so crass. The thing is, reciting the alphabet in a little singsong chant isn't the amazing thing. He's actually been doing that for awhile.

The amazing thing is that he's gotten bored with it, and he's decided to take it up a notch. Specifically, he'll say the entire alphabet with each letter sound starting with, say, /b/. As in the following: "Bay Bee Bee Bee Bee Beff Bee, Baich By Bay Bay Bell Bem Ben Bow Bee, etc." And he goes all the way to the end, and finishes off with, "Bow by bow by Bay Bee Bees, bext bime bon't bou bing bith be."

Granted, he still tends to skip a letter or two, but otherwise he's able to keep very good track of which letter he's on. And he doesn't do it slowly, either -- it's full speed ahead. I can't do it that quickly. Also, keep in mind that I've made no attempt to reproduce his toddler articulation. For example, he certainly isn't saying either "next" or "bext" correctly yet. But he does say them the same way -- meaning that he's correctly substituting a /b/ for an /n/ and otherwise keeping the word the same.

Talk about phonological awareness. Must be all that Wonder Pets we let him watch.

Sunday, August 30, 2009

Lucas' Mommy has been busy

Check out all these great listening activities and materials that Lucas' Mommy has been putting together lately:
http://lifewithlucasrc.blogspot.com/2009/08/ideas-borrowed-ideas-new.html

Ben's First Story

"I'm going to tell you a Leah and Alex story. Once upon a time, Leah and Alex walked to the cemetery. To look for animals."

And then he kind've ran out of steam, but still we were pretty impressed. This was at lunch today, and I had told him a story about Marvin the Cat (a character invented on the spot). Then Neil told him a follow-up story about Marvin. So Ben was in the groove, and decided to tell one of his own.

We often tell him Leah and Alex stories. Leah and Alex are two of the main characters in the Signing Time DVDs that Ben loves. Since we can't/won't watch Signing Time DVDs every minute of the day, then we started filling in some of the remaining minutes with made-up stories. Somehow, Alex always ends up incurring a small boo-boo requiring a band-aid -- it's the same principle (although not of the same magnitude) as Kenny's recurring demise in each South Park episode.

Ben has been engaging in fairly elaborate imaginative play lately. Almost every day he puts his Curious George doll down for a night-night nap. "He needs a pillow," Ben will announce, and go off and get a pillow. "He needs a blanket." "He probably needs a ba-ba [pacifier]." He has also been seriously into picnics for awhile now, and his various plastic and stuffed animals often join him for a picnic on the family room floor. Invariably, "spinach and naan" is served, this being Ben's favorite food.

He has added some more nursery rhymes to his repertoire. Here's his current favorite:

"The man in the moon came down too soon
And asked the way to Norwich.
He went by the south and burned his mouth
With supping cold plum porridge."

Thursday, August 27, 2009

Great sites

Here's an interesting site I found through live*laugh*love*family:

http://mommyspeechtherapy.com/?page_id=2

And through that I found the following:

http://www.superduperinc.com/default.aspx

It's a website with products, information, and free downloads for working with special needs kids, aimed at professionals and parents. For instance, I just read through some free handouts on IEP meetings, phonological awareness (so that's what "Wonder Pets" is building!), developing reading skills in the birth to preschool years, etc.

Wednesday, August 26, 2009

Words of encouragement needed

Jennifer over at Crazy Mama of 3 is going through a tough time. Her mother has ovarian cancer and is facing a tough battle, and everyone is feeling very overwhelmed and scared. Jennifer is requesting e-mails of encouragement to read to her mother. If you have a moment, please visit and share your kind thoughts.

Tuesday, August 25, 2009

Another calendar idea

Tayten's Mom posted this about the calendar she uses with him. It's available from the Advanced Bionics website. She prints out icons and they attach them with velcro. One of the commenters on her post said that they use poster putty. I like the fact that this calendar has a large square for each day -- the squares on our calendar are pretty cramped.

Wednesday, August 19, 2009

Wait Time and Literalism

Ben's doing great with language, but of course there was a time when it was not at all clear that this would be the outcome, and even now we're cautiously optimistic and vigilant. So when you have such concerns about your kid, it's hard not to test him continuously -- "Ben, can you say your ABCs?" "Ben, I hear something -- what is that?" We try to restrain ourselves, and to keep things light and not pressure him to "perform."

An upside to all this is that we're constantly challenging him. We're not afraid to ask him questions that we're pretty sure he can't answer yet, and we make it very clear that it's perfectly okay not to know the answer to something, or not know how to do something. This is an important lesson on its own. Think about how many of us, even as adults, are so ashamed of ignorance on some topic that we try to hide it, thereby missing opportunities to remedy it. Also, it's shocking how many times he does manage to answer the question, even when we weren't expecting it. A very important habit to develop is Wait Time. Ask a question, wait awhile, rephrase it if it looks like he didn't understand it, wait some more, keep the pressure and anxiety level low, keep waiting. Often a minute or more will pass before Ben coughs up an answer, and we would miss that if we butted in too soon. If it becomes clear that he's just not there yet, we'll help him put an answer together, or model one for him.

We had a TOD (Teacher of the Deaf) coming to our house every week for about a year. Her intentions were good, but she wasn't able to do much with Ben, mainly because she just didn't get the Wait Time idea. If he didn't answer within two seconds, she would answer for him, and this just frustrated him to the point that he would cry or tune out.

One final observation: Ben is becoming a real literalist! Either that or he's seized on a great loophole for getting out of having to perform for us. Me: "Ben, can you say, 'Michelle, can I have the puzzle please?'" Ben: "Yes." Technically true, but not what I was looking for.

Saturday, August 15, 2009

What Ben's been saying lately

  • Neil: "What kind of gym will you play on at the playground?" Ben thinks, then says, "Jungle!" Ben pauses, and then comments, "I wonder why they call it a jungle gym."
  • Ben, in the bath (with no hearing equipment), looking up at Neil's ears: "Daddy doesn't wear earrings. He has just ears."
  • Several times, when we've discussed his Madison relatives, Ben has referred to someone named Amy. We have no idea who this is. Tonight, during the "I love you" ritual before I take off his hearing equipment, I added, "You're so special!" Ben: "Special Cousin Anna! Special Cousin Megan! Special Uncle David!" [The Madison folk will understand the references.] Then, of course, "Amy!" Pause, and Ben adds, "I never met Amy." I'm again wondering who the heck Amy is. Then it dawns on me, "Oh, Pascal's Mommy is Aimee!" No response. A few minutes later, after the equipment is off, he says, "Pascal's Mommy is Aimee, but this is a different Amy." So we're still in the dark. Any suggestions from the Madison contingent?
  • While on a walk to the cemetery: "That's not our driveway. It's someone's driveway, but it's not our driveway."

Wednesday, August 12, 2009

Thinking of Jess

Jess's husband Jeremy has been wounded in Afghanistan. He is in Germany for surgery. My thoughts are with Jess, Connor, and Jeremy right now.

Monday, August 10, 2009

Cochlear Cats

I just came across this picture on Kate's blog, and she also had a link to the relevant study. Too cool!

Temporal Paradoxes

So how come July just went flying by, but the hour and a half I spent getting a root canal this morning moved like a constipated glacier?!?

Anyhoo, here's Ben's July:



He had his first dentist appointment on the 2nd. He didn't like it much. But he loved the dentist's name, and he repeated it throughout the day with joyful exaggeration (Dr. Boooooooo-eeeeeee!). The 8th is graced with a very disturbing image of what appears to be Mickey Mouse after taking psychopathic drugs and painting himself blue. This was supposed to be one of the Blue Meanies from the Beatles' movie "Yellow Submarine", of which Ben is a zealous fan. My artistic powers were similarly impaired on the 27th, when my attempt to depict Ben in a swimsuit failed on virtually every measure; I meant to go back and tidy that drawing up a bit, but never got around to it. As you can see, a fair amount of swimming seems to have taken place. Actually, it was a very rainy and cool month, so we seized every opportunity we got and it always made it onto the calendar. On the 30th, his daycare provider set up the slip-and-slide in the yard -- and he got to go swimming again when he got home! Starting on the 12th, we made a trip east -- first to Sturbridge, MA, for a cochlear implant convention, and then to NYC for his one-year follow-up appointments with his CI surgeon and the audiologist at NYU. In NYC we stayed with Neil's parents and brother; we didn't take the calendar, but I added a few icons after we got back. On the 15th we went to the Bronx Zoo, with mixed results. It turned out that it was a discount day, so all the daycampers were bussed in from all over the greater NYC area, making for massive crowds, long lines, a lot of noise, and very few opportunities to see non-human animals. We did get a great view of some camels as they were led across the path in front of us from one enclosure to another. You'll notice as per the 23rd that Ben has developed an interest in Home Depot (perhaps not unrelated to his love of Bob the Builder). There were many trips to Home Depot that week, since Neil's brother was visiting and putting in a new hardwood floor in the attic (lovely work, Uncle Fred!).

Thursday, July 30, 2009

And a year ago at this time....

.... Ben was hearing through his CI for the first time! Meaning that there were whole new worlds of sound that he was hearing, that he'd never heard before.

Here's an excerpt from my diary entry for July 30, 2008:

"Activation Day!!! All went very well. Appointment with [Dr.] Roland [the CI surgeon] this morning (took subway). Killed four and a half hours -- park, aborted attempt at UN grounds, pizza, etc. Ben did so well. And then activation -- got a response, good mood! So exciting. Headpiece comes off a lot, but easy to put back on.... Ben doing very well -- clearly hears some new stuff, not sure what to make of it, but good mood."

Between the appointment with Dr. Roland in the morning, and the activation appointment with the audiologist in the afternoon, we had some time to kill, but we didn't want to travel all the way uptown and back again. So we hung out at a nearby playground (where we've spent much time since, what with all of Ben's follow-up appointments) and then tried to take a stroll around the UN gardens, which Neil remembered as being very beautiful. (The UN buildings were just up the street a couple of blocks.) Except that Neil hadn't been there since before 9-11, and they have really beefed up the security. You can't get to the gardens at all -- and I think they were under renovation, anyway. You have to go through a long security line just to get inside the building. Long story short, we gave up on that plan, but not before waiting in line for a long time and inadvertently taking Ben through a metal detector -- much to our horror! Here we were, just an hour away from activation, and we were terrified we'd just nuked his implant! (Turns out that metal detectors do no harm to cochlear implants, but we didn't know that at the time.)

Here are links to his activation videos, part one and part two. The audiologist turned the lights off, to help direct his attention to the light-up dancing toy, so the video quality isn't great. Also they're long enough that it would take me many hours to caption them, so they won't be accessible to those with hearing loss -- I apologize for that.

Monday, July 27, 2009

The Calendar Thing

A number of you have expressed interest in Ben's calendar; see for example this post. First of all, it goes without saying that you're all more than welcome to use and adapt this idea however you like! Second, some of you said you weren't sure how to fit it into a busy schedule. It actually doesn't take much time. Every evening, right before toothbrush and bath, Ben and I "do calendar," which means we talk for a couple of minutes about what he did that day, and we figure out what to write or draw. If he's having trouble staying on task, then I kind've lead the discussion and make the decisions -- I want to keep it a positive experience for him. He often wants to talk about other dates that we've already filled in, which is great -- reflecting on past experiences is actually one of his IFSP goals for the next six months. We always start off by pointing to today's square, and discussing the date and day of the week. The first few times it took longer, but it soon became a pretty quick little routine.

Our calendar is one we write on with dry-erase markers. At the end of the month I take a picture for posterity, then erase and we start over with the new month. You could of course use paper. Leah suggested a feltboard approach, which sounds like a cool idea.

Wednesday, July 22, 2009

Nursery Rhymes!

Here's some video that I shot last Sunday, the day Ben turned 21 months old.

Saturday, July 18, 2009

Just wanted to get this off my chest....

Okay, we've known about Ben's deafness since shortly after he was born. And right from the start, it was, naturally, a Concern and a Source of Anxiety. Meaning that we were (and still are) often concerned and anxious about his well-being and his future, on account of his being deaf and all. Now, almost 21 months later, we are very excited that he is developing so well, and this has relieved many of our concerns. But not all of them.

And you know what? I'm allowed to be concerned. It's okay. And most of my concerns are well-grounded and completely rational. And it's not the same stuff that all parents go through. It's just not.

I bring this up because frequently, when I voice these concerns, I am given the fairly explicit response (by people who are trying to reassure me -- and themselves) that my concerns are groundless, exaggerated, needless, counterproductive, or that what I'm dealing with is just a normal parenting thing, rather than a deaf parenting thing.

Yes, most of what we deal with on a daily basis is normal parenting stuff. And yes, even parents of typical kids face the fear of the unknown, and the typical kid today could suddenly go deaf tomorrow (or get cancer or get hit by a car -- y'all know the sorts of scenarios that play through our parental heads). Yeah. But (I always want to say in response) your kid isn't deaf today, and almost certainly won't be tomorrow. Mine is. And it is an issue, thank you very much. And I am permitted to consider all aspects of this fact, including the less-than-rosy ones, to keep an eye out for possible problems and to try to trouble-shoot problems when they arise, to think about the future and to consider ways of handling problems down the line. And I'm not being self-indulgent or self-pitying or obsessive when I do this. I'm being a concerned, watchful, practical parent of a child whose health and well-being are my biggest responsibility. Thank you very much.

Just a little vent. Hope you don't mind.

Saturday, July 11, 2009

A year ago at this time....

....we were trying to figure out how to accomodate two adults on a very small, uncomfortable, delapidated fold-out sleeper chair. Ben was sleeping in his hospital crib. We were crammed into one half of a shared room in the pediatric ward at the NYU Medical Center.

You see, a year ago today, Ben received his cochlear implant.

I didn't start this blog until several months later, so I never posted the story of Surgery Day. And I'm not going to do it now, either, because it's late and we have another big day tomorrow. We're in Sturbridge, Massachusetts, at the biannual Northeast Cochlear Implant Convention. Ben spent much of the day in an on-site daycare while Neil and I went to informational sessions. We'll do the same for half of tomorrow, and then drive to New York City. On Monday we have Ben's one year follow-up appointments at NYU. Hard to believe. What a year. What a crazy, beautiful year.

I love you, Ben. You have brought immeasurable joy into my life.

Thursday, July 2, 2009

AB factory tour

Miss Kat and her mother are taking part in one of the JTC summer programs, and they recently took a tour of the Advanced Bionics factory. Very interesting....

http://misskatsmom.blogspot.com/2009/07/jtc-week-1-day-5.html

Wednesday, July 1, 2009

Another month gone

And here's what Ben did in June:


On the 7th we drove home after spending a week in Wisconsin. Regarding the 8th, we often take walks in the cemetery at the end of our street, and there's a Big Red Barn just inside the entrance that is apparently used to house equipment. Ben loves this barn, and each time he sees it he solemnly intones that no animals live in it. (A patch of brown paint recently appeared on the side of the barn, and we fear that it may soon be repainted.) On the 13th, Ben and I created an elaborate town on the family room floor from blocks, complete with airport, harbor, extensive zoo, and a working farm. I suggested the name Bennyton, and he supplied the state. (We stayed overnight at an Indiana hotel on our way back from Wisconsin.) On the 16th, Ben took his first splash in his new kiddy pool, and he had a blast. You can see that we breakfasted on waffles on the 21st. We visited Neil's parents the following week, and my mother arrived for a visit (she's still here) the 28th. Yesterday, the 30th, Ben was drawing with crayons and, observing that the pink one was broken, asked, "Daddy, how did it break?" He was really on a vocal tear, because later the same day, while watching the Wonder Pets discuss how to rescue a flamingo who was stuck in the mud, he announced, "They have to get the baby flamingo out of the marsh." Those two sentences were so beautiful that I had to get them both onto the calendar. I swear he said these things, and we have my mother as witness. (And we are all unimpeachable disinterested parties, of course!)

Monday, June 29, 2009

The Brochure

You should check out Lucas' Mommy's latest post:

http://lifewithlucasrc.blogspot.com/2009/06/my-brochure.html

Funny, poignant, and right on the money.

Saturday, June 27, 2009

This and that....

First, the good stuff. We just got back yesterday from a week in Hunter, NY, visiting some of Neil's family. Ben was in peak form, showing off all of his vocal abilities for the very appreciative crowd.

When we were in Wisconsin, my mother gave him a huge pile of books left over from her teaching days (including the fantastic "If You Give a X a Y" series, e.g. "If You Give a Mouse a Cookie" -- Ben loves those). One of his favorites is a big book of Mother Goose nursery rhymes. He now has a bunch of them memorized. The one that gets the most air time runs as follows:

Father and Mother and Uncle John
Went to market one by one.
Father fell off, and Mother fell off,
But Uncle John went on and on.

Seriously, he won't stop saying this one. Impressive, adorable, and hilarious the first 2500 times, but I confess that it's finally losing its novelty. At some point one of his adoring fans changed it up a little, something like "Grandma and Grandpa and Uncle Stan went to market etc." Ben immediately took up that challenge, and has since composed many variations on the theme. Another favorite is this one:

Bat, bat, come under my hat,
I'll feed you a slice of bacon.
And if I bake I'll give you some cake
If I'm not mistaken.

He also offers up snatches of others when his mind is wandering. I was getting him out of the carseat at the grocery store today when he announced, "What a good boy am I!"

Now, the not so good. We went to a joint birthday party for two of Ben's friends today. The kiddy pool was filled, the sprinkler was going, it was toddler heaven. Ben has been swimming a few times already, and loves it. Of course, all the hearing equipment has to come off, and it never goes anywhere near the water. When it's just us and him, no problem -- we explain everything in advance, and we communicate pretty well even with the equipment off. But it was a little trickier today. The other kids could do some sprinkler time, then run off for food, play with toys, and come back to the sprinkler, with no transition. But you can't just slap thousands of dollars worth of hearing equipment on a dripping wet kid. You have to dry him off completely, change out of the wet swimsuit and swim diaper, put on regular clothes, put on the harness, insert the hearing aid, and power everything up. Which means you kind've commit to no more swimming for that day. Never mind the fact that this takes a good ten minutes indoors while the other kids are out frolicking in the yard, impatiently waiting on Ben before they can sing Happy Birthday and have cake.

And I have to admit that I felt a little bad about this. A little jealous, maybe. I was also concerned about the future. Ben seemed to have a pretty good time at the party, but he was very withdrawn and spent the entire time by himself or with us. Part of that may be his personality. But even the most gregarious toddler would have a hard time interacting with peers while he can't hear. Because of the circumstances, he was more clearly marked as Different. These are kids he sees at least once a week at playgroup, and they are used to him with his equipment -- they don't pay any attention to it. But today, he couldn't hear them, and this was suddenly confusing and disturbing; there were a few concerned looks and whispers. Is this how it's going to go? Will he learn to interact more as he gets older, or will he continue to withdraw into himself when the going gets rough?

I realize that part of why something like this hits me this way is that, frankly, we're spoiled. We've been very fortunate. He does so well with the CI that under almost all circumstances, he looks, acts, and talks just like a hearing kid (albeit with some strange objects clinging to his head). It's pretty rare that we really feel the weight of his deafness.

Friday, June 12, 2009

Wisconsin in Pictures

Ben and his Grampy at the Madison Zoo

Ben feeding me some pretzel as his Aunt Kathy looks on

Ben loves "big red barns" -- and we found one at a Madison playground!

Ben strikes a Jenson Button pose at the same playground.

On the beach in Milwaukee
Taking in the art scene along the Milwaukee Riverwalk
Checking out "The Bronze Fonze" along the Riverwalk

Monday, June 8, 2009

June already?!?

Here's what Ben did in May:

You can see several references to baby bamboo. By the 23rd, we had established Skype communication with Ben's paternal grandparents. Starting on the 24th you can see evidence of Ben's newfound love of watering cans. On the 18th, we had a memorable trip to the Buffalo zoo -- and I must say that I'm rather proud of my rendering of a giraffe and elephant. New shoes were purchased on the 6th. The 17th was the fateful day that Ben acquired scarlet fever while playing in the sandbox with friends (or so we figure). A red cross a week later signifies that we spent overmuch time in the ER waiting for a prescription for antibiotics to treat said fever. On the 30th, we drove through the night to Wisconsin (we just got back home yesterday). We did all sorts of fun things in Wisconsin -- more details to follow.

Sunday, May 24, 2009

Scarlet Fever!

I kid you not -- Ben has scarlet fever. We found out a few days ago that one of his toddler friends (with whom he spent some quality time in the sandbox last Sunday) has it, so when Ben started breaking out in a rash yesterday, we knew what to look for on webmd.

And of course it would be Memorial Day weekend, so his pediatrician can't see him until Tuesday. I called her today and described everything, and she said that it did sound exactly like scarlet fever, but she couldn't diagnose and prescribe without seeing him. So she told us to take him to the ER. We did, and managed to spend more than three hours there altogether, but we walked away with a prescription for antibiotics. He should be good to go for daycare on Tuesday, and hopefully the various symptoms will abate over the next few days.

Wednesday, May 20, 2009

Benny pics



Nothing to say here, except that I love these pictures! The first one is at a local playground, and the second one is at the Buffalo zoo.

Wisconsin legislation

I have strong Wisconsin ties -- my sister and I were born there, even though we spent much our childhood elsewhere, and she and her family, and my parents, are all living there again now. So I'm very excited about the news that the Wisconsin legislature passed a bill requiring private insurance to pay for hearing aids and cochlear implants for children. I first heard about this a few weeks ago on cicircle. More recently I've learned that a group of Deaf protesters are going to try to persuade Governor Doyle to veto the legislation, on the premise that CIs are dangerous, expensive, and a threat to their cultural identity. Jodi has the article on her blog, as well as a link you can follow to send a letter to Doyle asking him to sign the bill.

Now, some of my nearest and dearest have libertarian leanings, and they have serious misgivings about this kind of government interference with the free market. I don't. (To the contrary, I have misgivings about something as vital and fundamental as access to health care being at the mercy of the free market.) Anyway, I encourage you to check out Jodi's blog and contact Governor Doyle.

You might be wondering what's so dangerous about CIs. Nothing, really. Okay, it's a piece of electronic gadgetry implanted into your skull, so there are inevitable attendant risks. But those risks are on the whole very very small. However, shamefully inaccurate myths continue to circulate in the Deaf community -- for example that CIs cause brain cancer (they don't).

Are they expensive? You betcha. The total costs of getting Ben implanted (pre-operative evaluation and testing, the device, the surgery, the hospital stay, follow-up mapping and evaluation, etc.) exceed $100K. Almost all of which was paid for by our insurance (albeit reluctantly). How do I feel about that? A touch guilty -- I want to apologize to my fellow NYS employees for the (almost negligible) effect this has on their premiums -- a cost to the public which is more than offset, incidentally, by long term savings in special education.

Are they a threat to Deaf culture? Only in the sense that people who receive CIs are less likely to join it, and less likely to learn ASL. Ben is deaf, and always will be. He may well choose to identify as Deaf at some point in his life, and if so all power to him. But it will be his free choice, one of many options, rather than the only viable option because of a lack of other communication modalities. I'm excited that he's learning some ASL, and I hope this will continue for a variety of reasons. Also, I will certainly expect him to be respectful of the Deaf community, just I would expect him to be respectful (to a point) of any group, regardless of the things said by their more extreme members about our family and the choices we have made. (Pick your favorite major religion for a suitable application of this principle.)

Friday, May 15, 2009

Tag!

I got tagged! In a nice way -- no paint balls or swine flu here. Leah tagged me to continue a blog-wide poll on the 5 Things I Love About Motherhood. (Click on Leah and then work your way backward through the chain.)
  1. Cuddling. Okay, so everyone says this, but it's pretty much a universal fave. Holding Ben as he starts to get sleepy before bedtime, planting little kisses on his head, putting my hand up to cradle his cheek as he drifts off.... You just can't go wrong with that. It's the best. Absolute best.
  2. Rediscovering all the wonderful toys and books of childhood.
  3. Watching Ben develop. Every day brings new insight, lessons, skills, enthusiasm. Watching his eyes light up as he figures something out for the first time.
  4. Watching Neil be a great father. I knew he would be. It's cool to see it play out.
  5. Hmmm.... This last one will sound strange and disturbingly self-centered, but I have to confess that one of the things I love about motherhood is what I've learned about myself, and how much stronger and more capable I feel now. Not like I can handle anything, but like I've handled a lot and done a half-decent job, if I do say so myself.

And now I'm supposed to tag five more people. I choose ... Fethiye, Jess, Rouchi, Melanie, and Dan*. Tag -- you're it! (Now, just because I tagged you, don't feel obliged to carry this forward. I know you're busy. Maybe you're just not into it. That's fine. No pressure. Don't be put off by the three years of bad luck that will ensue if you dare to break the chain.... Just kidding!)

*You're right. Dan is not a mother. He is, however, a devoted father, and I would love to hear his 5 Favorite Things about Fatherhood. Not that that's really the point of his blog, and I hesitate to suggest that he use valuable blog real estate for this. But that's his call. I just tags 'em, I don't calls 'em. You should check out his blog anyway, regardless of whether he picks up on this! For that matter, Fethiye's blog isn't about parenthood, either, adorable pictures of newborn Quentin feet notwithstanding.

Wednesday, May 13, 2009

Next American Idol contestant

We've finally gotten Ben to sing some songs, more or less on his own. For quite awhile now he's been very good at completing the lyrics when we sing ("In the town where I was ... " "born!"), but he has been hesitant to sing more than a few words at a time on his own. Here are some samples of his recent work:

"I'm a Little Teapot"

  • I start: I'm a little teapot short and ...
  • Ben chimes in: stouthereismyhandlehereismyspoutwhenuppourmeout.

"BINGO"

  • Neil: There was a farmer had a dog and ...
  • Ben: Bingowashisnameb-i-n-g-o-b-i-n-g-o-b-n-gbingoname

"Ob-la-di Ob-la-da"

  • Neil: Desmond has a barrow in the ...
  • Ben: marketplacemollysingband

He doesn't actually "sing" in the sense of carrying a tune, or even attempting to do so. (He doesn't have that kind of voice control yet.) It's more like a verbal sprint to the finish line, or how one might recite the Gettysburg Address while being chased by wolves -- the emphasis is on speed rather than oratorical niceties.

Monday, May 11, 2009

Ben's Second and Third Jokes

As you know, Ben has a minor Beatles obsession. A current favorite is "Ob-la-di Ob-la-da." At some point, he seems to have decided (of his own volition) that "ob-la-di ob-la-da" refers to anything that brings happiness or pleasure. At least, that's the best theory I can come up with for how he uses it. He started by saying things like, "Ob-la-di ob-la-da in noodles," or "... in honeydew." After doing this sporadically for a few days, it suddenly occurred to him that it was funny, and that the possibilities for humorous adaptation were endless. Now we get, "Ob-la-di ob-la-da in ... [looks around the room] in the TV!" [peals of laughter] He has identified ob-la-di ob-la-da in the gazebo, on the ceiling, in the crib, in Mommy's nose, on Daddy's elbow, buried in a variety of foodstuffs, and indeed in, on, or around every item within his gaze. Every instantiation is even more hilarious than the previous.

This evening, while on a walk to the "way way back" (as Ben describes the furthest portion of our backyard), Neil happened to tickle Ben's face with a small stalk of wild "bamboo." [This is a rapacious weed around here that probably bears no botanical resemblance or relation to real bamboo.] I was not there at the time, so I don't know the details, but apparently the suggestion was made by one or both parties that Ben eats baby bamboo. He thinks this is even funnier than the Ob-la-di joke. He spent the rest of the evening squealing "Benny eats baby bamboo!" and "Mommy eats baby bamboo!" and more generally "X eats baby bamboo!" for an enormous variety of X, in between showers of giggles.

Monday, May 4, 2009

Ben's First Joke

Okay, this one will take some explanation.

For quite some time now, Neil has periodically told Ben the following joke: A tomato and a beet were walking down the street. The tomato says to the beet, "Are you a tomato?" And the beet says, "No, I'm a beet!"

Yes. That's the joke. Okay, so it's not exactly Chris Rock, but it has a certain charm.

Occasionally the tomato and the beet change roles, but to more or less the same effect. Why a tomato and a beet, you ask? Well, there are framed pictures of a tomato and a beet in our dining room.

When Neil is really feeling restless, he'll make an even greater departure from the tried and true by describing an analogous exchange between, say, a potato and a yam. Those were the protagonists in tonight's episode.

So I decided to one-up him as follows: A turnip and a radish were walking down the street. The turnip says to the radish, "Are you a turnip?" And the radish says, ....

And here I paused and looked suggestively at Ben, who piped up, "No, I'm a radish!"

Saturday, May 2, 2009

Socializing Issues

Usually I'm in full brag mode when posting (keep in mind that my original audience consisted of grandparents, who can't get enough of that sort of thing). But today I have Concerns. This morning we went to a Welcome Baby party for some friends (i.e. a baby shower after the kid is born). It was loud, there were a million kids running around. I could understand Ben being a bit overwhelmed and clingy. But he was more than just clingy. Whenever he lost sight of either of us, he started howling and crying. He wanted to be in our arms or on our laps, receiving our full attention at all times. We've taken him to plenty of similar social events in the past, and he would start off a bit clingy, then warm up to the occasion and actually have a good time. He didn't like it when we got too far away, but at least he could roll with it.

I had thought he was doing well at day care. Certainly he seemed to be a in good mood when I picked him up every day, and our day care provider gave positive reports. He didn't like it when one of the mothers came for lunch several days a week, but otherwise everything seemed fine. Then this week the day care provider indicated that he'd been a little fussier than usual. And on Wednesday when I picked him up, she said something like, "He's not having as many good days as we'd like by this time." Which very much took me aback -- what does that mean?

Then Neil says, yeah, he's been pretty clingy at the weekly play group he takes him to. The other kids are climbing the walls, running from room to room, but Ben freaks out every time he loses sight of Neil.

He's never been very venturesome socially, and I would say that there's always been a little underlying tension when he's in social situations. But I never thought it was a real problem until now; he seems to be taking a turn for the worse. On the other hand, when he's at home with us, he tends to be very happy and cheerful for the most part. So I'm wondering what, if anything, to do. Is this a phase? Is it just his personality? Are there ways of developing more self-confidence and independence in him?

Friday, May 1, 2009

Ben's Journal

Awhile back, my mother got Ben a calendar. A nice, big calendar with peel-off vinyl numbers so you can set it up for any month, and a slick surface that you can write on with dry-erase markers. Every evening we "do calendar" with Ben, meaning that we discuss his day and record some of the significant events. For example, you can see that he turned 18 months old on April 19th and had pizza on the 23rd. It's kind've like his journal, except that he's not actually allowed to use the markers, despite his oft-repeated requests. The plan is to take a picture of it every month before erasing it.

For those of you who want to do something similar, my mother got it at a teacher's supply store in Wisconsin. She's been retired for a couple of years now, but you know the saying -- you can take the teacher out of the classroom, but you can't get her out of the teacher's supply store.

Holy crap -- did he just say that?!?

Tonight, while playing with his beach ball: "Pi Day, Pi Day, I took it home on Pi Day."

He did indeed take the beach ball home on Pi Day. In keeping with the vaguely beachy theme of the event, there were lots of beach balls for the college kids to toss around, and Ben got to bring one home afterward. He was saying "Pi Day" reliably by the end of that day, and "beach ball" within a few days. I'm sure we discussed at the time that he got to take a beach ball home on Pi Day. But it's been a month and a half since then. He creeps me out sometimes.

Wednesday, April 29, 2009

Correction....

We were listening to "Eleanor Rigby" yesterday (because it was a Tuesday, and Ben wanted to celebrate by listening to the Beatles), and I realized that in fact the only instrumentation is the string ensemble (orchestrated by George Martin) -- none of the Beatles actually play their own instruments on that one. So it's not too surprising that Ben would recognize that melody played on the violin. Well, maybe it still is -- music appreciation with a CI is iffy, as a quick survey of the adult CI-user blogs on deafvillage will confirm.

What I'm really wondering is how much of Ben's apparent appreciation of melody is due to his bimodal hearing (CI + HA), and how much can be attributed to the Fidelity 120 processing strategy on his Advanced Bionics CI. I'll never know for sure, but it would be nice to gain a little insight into this as he gets older and can describe his perceptions.

Monday, April 27, 2009

More tidbits....

  • My sister suggested that I test Ben's melody recognition ability by playing some of his favorite songs on other instruments (without lyrics). Interestingly, he recognized "Eleanor Rigby" immediately when I played it on the violin, but not at all on the piano, even after I played it several times. I wonder if it's because the violin's timbre is closer to that of the Beatles' guitar and vocals (as well as the string accompaniment in the Beatles' version) than that of the piano. Further investigation is warranted.
  • Oh, I should mention that I certainly wasn't playing in the original key, so he recognized the melody even after it was modulated into a different key. I'm wondering how that relates to Dan Connell's ongoing efforts to calibrate his pitch perception via his CI.
  • At dinner on Saturday, I was chatting with Ben. Neil was out of town at a conference. I said to Ben, as I've said on many occasions, "You're the best Ben ever." He responded with, "Best Ben in the whole wide world?" His articulation was almost perfect (for an 18 month old), so I understood him immediately, but I couldn't quite believe he had said this. How on earth could he come up with something like that on his own? So I asked, "Did Daddy say that you're the best Ben in the whole wide world?" And he said (and signed) "Yes." (He almost always signs "yes".) Okay, mystery solved -- the phrase "Best Ben" triggered his memory of something Neil had said. So the next day I asked Neil about this, and he said that yes, he had probably said something along these lines at some point, but not recently, and not with any particular emphasis. The point is that Ben does this to us all the time -- we'll use a phrase fairly casually, and two weeks later he'll spout it back to us under very different (but appropriate) circumstances. The kid has an amazing memory.

Friday, April 24, 2009

WOW!!!!

You have GOT to check out this video:

http://www.youtube.com/watch?v=N2c64igEiZw

Annie is the four year old daughter of an old childhood friend of Neil's. He just reconnected with him after many years, and found out that his daughter is also Connexin-26 deaf and has bilateral AB implants. (Small world!) In this video, Annie asks the Four Questions (in Hebrew!!!!) at the Passover seder. I don't think many hearing four year olds could do anywhere near this well! She's just amazing!

Monday, April 20, 2009

How it's supposed to go....

Check out this lovely story:

http://nopeas.blogspot.com/2009/04/deaf-child-area.html

Our CI surgeon gives out his e-mail address -- and actually responds when we e-mail him! Now, all of us could tell tales of some health professionals we've dealt with on the far opposite end of the helpfulness spectrum, but it's nice to know that there are some out there who really go the extra mile.

Sunday, April 12, 2009

Yes, he actually said this....

Last night at dinner: "I bet John Lennon eats naan with spinach on it."

Now, keep this in perspective. First of all, it was toddler-speak, intelligible to nobody except his adoring parents who hang on his every utterance and are inclined to interpret it with a generous spirit. Also, he had already mastered smaller portions of the sentence. Ever since he asked me a few days ago whether John Lennon eats Dora cookies, he has been obsessed with the former (in every sense*) Beatle's diet. After much deliberation, we have decided that it encompasses rice, couscous, cheerios, yams, noodles, yogurt -- in short, whatever Ben is eating at the time. After I responded to some of his queries about John's eating habits with "I bet he does -- I bet John Lennon does eat couscous with yam," he picked up on the phrase. And when he observed last night that the proper way to eat saag paneer is to smear it on some naan, the last piece of the puzzle fell into place. It was just a question of stringing the parts together properly. After several attempts, he managed it, to my slack-jawed amazement and enthusiastic applause.

He has added "Eleanor Rigby" to his rotation, taking some of the pressure off his old stand-bys like "Yellow Submarine" and "All Together Now". Having identified Bob Dylan's image on the Sgt. Pepper's cover, we've occasionally turned our attention to "Tangled Up in Blue". He is also a Jonathan Richman fan, and his favorites there are "Circle I" and (I know I'm going to get some concerned e-mail from Ben's various grandparents about this one) "Lesbian Bar". (Trust me, it's a cute song, primarily about dancing.)

*The astute reader will note that Ben is clearly unaware that the Beatles broke up forty years ago, or that half of them are regrettably no longer with us. As far as he is knows, the Beatles are a going concern, and they spend most of their time in the Yellow Submarine eating couscous and brushing their teeth. Ben is not a keen teeth brusher, and we try to cajole him into accepting this insult upon his person by claiming that it is an established practice among his favorite celebrities and daycare friends.

Sunday, April 5, 2009

Play Time!

I'd really like to compile a list of good language play ideas. In the comments section, please share your favorite toys, materials, and activities. I'll get us started:

  • Safari Farm has THE best little plastic animals: http://www.healthstones.com/farm_life_store/safari_farm_toy_animals/safari_farm_toy_animals.html Making animal sounds (baaa, mooo, nay-nay, etc.) is a great first step in articulation.
  • Check out these plastic fruits and veggies: http://www.thefind.com/family/info-play-vegetable-basket We also got him a set that includes very realistic looking bread, butter, eggs, etc. Great way to expand vocabulary. Ben can now name just about everything in the produce section.
  • Babybug Magazine by Cricket Magazine Publishing (http://www.cricketmag.com/ProductDetail.asp?pid=10) is FANTASTIC. Ben loves it.
  • Ben was so taken by an illustrated version of Humpty Dumpty in an issue of Babybug that we started playing "Humpty X" for a variety of X. Build a wall out of blocks, put a plastic banana on top, and recite: "Humpty Banana sat on a wall. Humpty Banana had a great fall," and push the banana off. After awhile he was completing almost all of it. Expands noun vocabulary and reinforces the idea of a verb (fall) as an action and prepositions (on/off). He's kind've grown out of this now.

Wednesday, March 25, 2009

THAT'S my boy!

Tonight, while we were towelling Ben off after his bath (so he didn't have any hearing equipment on), he pointed to a John Lennon poster hanging in the hall and said, "John Lennon in Beatles."

Okay, so what he really said was more like the following:
"Dahn ... Wenn!"
"DahnwenndahnwenndahnwenndahnWENNNNN!"
"Beebuhl Beebuhl Beebuhl Beebuhl."
"INNNN."
"In Beebuhl."
"Dahn ... Wenn ... INNNNN ... Beebuhl!"

But you get the drift. You see, he's been on a major Beatles kick lately. His favorite Beatle is John (obviously). His favorite song is "Yellow Submarine." (Average number of renditions per car ride: 50,000.) His favorite album is Abbey Road. The boy has taste.

Saturday, March 21, 2009

Haute cuisine

Here's some video of Ben discussing spinach (in French) and politics. He seems to be very passionate about both subjects.

Tuesday, March 17, 2009

So I'm a math geek -- nothing wrong with that!


Here's a picture of us at our college's Pi Day celebration, that appeared on the website of our local paper. This year's event was called "SurPiVor", a spoof on the "Survivor" reality show -- hence the island theme, as epitomized by our cheap plastic leis. We professor types were under orders to wear Hawaiian shirts, obtainable at the Salvation Army for a couple of bucks (so I'm told), but gosh darnit, didn't get a chance to get out there, so I had to go with my customary Cow Pi sweatshirt. Ben is obviously enjoying the spectacle.

Saturday, March 14, 2009

Jodi, Evelyn, and Pi Day

Jodi (American Mom in Tuscany) has been promoting an international survey of parents of children with hearing loss. The results will be used to assess how much support parents receive from professionals, and what can be done to improve that support. It's easy and pretty quick (it took me less than ten minutes), so check it out: http://www.surveymonkey.com/s.aspx?sm=5eHe_2bpFgBxwGqaf_2fisWQog_3d_3d

Ben was on an Evelyn Glennie (a.k.a. "Ebe Gemmy" among the toddler set) kick this afternoon, and we came across an interview on oversteam. I also recommend the documentary "Touch the Sound," available on DVD. http://www.overstream.net/view.php?oid=iwrmudsti6lz

Finally, I join my Cousin Madeline (see her comment to last night's post) in wishing everyone a Happy Pi Day! Our Math Department celebrated Thursday night (http://www.observertoday.com/page/content.detail/id/520484.html?nav=5047) since we have Spring Break next week and nobody was sticking around for the weekend. We took Ben to the festivities and he had a marvelous time playing with the dry-erase markers and beach balls.

Friday, March 13, 2009

Wow.

Ben just said "I love you" tonight.

Okay, yeah, he was imitating me, and he probably doesn't attach much meaning to it.

Still, I'm floored. Unlike Ben, I'm speechless. And I'm crying.

Thursday, March 5, 2009

Hug

Warning: This post is pure brag, without even a hint of modesty. (So what's new?)

Last night I was sitting with Ben on the family room floor. I said to him, "Can you go to your nursery and get the book called Hug from the basket by your crib?" He gets up and heads down the hall. He's taking awhile, so I chat with Neil about other things. I've almost forgotten about Ben's mission. After a minute or so, he strides purposefully back into the family room, carrying the desired book.

It just seemed like a very complex set of instructions for him to understand and carry out. (Keep in mind, there are a couple of places where books are stored in his nursery, so the bit about the basket was important.) I wouldn't have been surprised if he'd had trouble with it. On the other hand, I wasn't all that surprised that he aced it. He's been doing a number of remarkable things lately.

He has the /h/ sound down pat. He has also mastered "no," thus signifying his ascendancy into toddlerhood. He loves daycare, and talks about Miss Pamela, her house, her dog, and the other children there. He also knows a good portion of the alphabet.

The other night he was choosing a CD to listen to, and he was saying "Aaaa paa" over and over again. It took me awhile, but then I realized that he was requesting the CD "Action Packed". Yes, our deaf 16 month old is asking for Jonathan Richman CDs by name.

In other news, after a couple of months of blissfully quiet nights, last night Ben woke up right around 1:00 am. We each took a turn at going in and comforting him a little, but no go. Nothing to do but let him cry for awhile. Now, this is hard enough when all your child does is cry. But the guilt and stress are greatly magnified when he's calling out "Mommy! Daddy!" I'm lying there thinking, "Why exactly did we teach him to talk?"

(Actually, when it comes to that, I remember last summer during a period when Ben was having Sleep Issues, checking him out on the video monitor during the night and seeing him frantically signing "more" over and over. He can pull the guilt strings just as well with sign as with speech.)

Tuesday, March 3, 2009

"Don't Divorce Us" video

Okay, this post has nothing to do with hearing loss, and on the surface it doesn't have much to do with Ben. But I hope you'll watch this video and sign the petition.

http://vimeo.com/3089746

It's a tough world out there. Loving, committed relationships are a good thing; they make the world a little better. What exactly is the problem with that?

Saturday, February 21, 2009

Some tidbits

Right now, Neil and Ben are dancing to Jonathan Richman out in the family room. Other music that Ben has listened to lately: Led Zeppelin, the original "Free to Be You and Me" album, Peter Paul and Mary, Evelyn Glennie, The Limeliters, Moxy Fruvous, the alphabet song as performed by Elmo (courtesy of YouTube), and Dvorak.

Two and even some three word phrases abound these days: "More oatmeal please," "egg omelet," "high hopes," bummer, dude" (Neil has been teaching him that one), "new cup," etc. The other day he made a brave attempt at saying "creme brulee," although he far overshot the number of syllables.

This afternoon Neil took Ben for a walk down the street to the cemetery, where they made a snowman. Ben had a blast.

Ben's receptive sign vocabulary: more, all gone, mommy, daddy, play, eat, ball, hurt, diaper, cat, dog, water buffalo, hippo, turtle, mouse, horse, fish, milk, water, bath, up, blue, and of course cookie.

Thursday, February 19, 2009

So long, Cousin Euclid

I'm mildly bummed. There was a really interesting discussion on cicircle recently of the origins of the Connexin-26 mutation that causes non-syndromic deafness. (Ben's deafness is caused by Connexin-26 -- see this old post.) The most common form of this mutation is a single basepair deletion of G at nucleotide position 35, hence the name 35delG. And it turns out that this particular mutation probably originated in ancient Greece. Which I thought was really cool -- as a mathematician, I'm more or less professionally obligated to venerate the ancient Greeks. I was already imagining Euclid or Pythagoras in my family tree.

Until I looked back at Ben's genetics report and realized that he doesn't have the 35delG mutation. Oh, well.

Ben has two variant types. One is a 1 basepair deletion of T at position 167; this so-called 167delT deletion has a higher carrier frequency among Ashkenazi Jews. The other is a massive 14 basepair deletion from nucleotide positions 313 to 326. The carnage, the humanity. It would be really neat to find out when and where these mutations originated. No, it doesn't change anything. I just like to think about things like this.

I'm sure my mother (a genealogist) has already uncovered lots of other interesting characters in our family tree. But no Pythagoras, alas.

Friday, February 13, 2009

Yet more debate (courtesy of Jodi's blog)

You should again check out this post from Jodi's blog. In particular, read the comments section. You get a good feel for the concerns and perspectives of the various parties, as well as the tenor of the debate (which at times is very strident).

http://rallycapsdotnet.blogspot.com/2009/02/deaf-school-cuts-mother-speaks.html

Just a smidgeon of back-story: The 1880 Conference of Milan was a pivotal point for deaf education. A.G. Bell himself was at that conference and led the charge for an exclusively oral approach, and many people blame him for the disastrous effects this had on deaf children during much of the 20th Century. The A.G. Bell Society has traditionally promoted oralism and has done much to support families (educationally and financially) who pursue this route. My understanding is that it has often taken a very adversarial anti-ASL position in the past. These days, as noted in some of the comments on Jodi's blog, it takes an officially neutral position with regard to ASL.

For the sake of full disclosure, we are members of the A.G. Bell Society. I like their newsletter. Interestingly, there are many ads in it for deaf schools that promote sign, TC, and cuing, so whatever bias the Society supposedly has against these practices does not extend to their advertising policy!

Saturday, February 7, 2009

Top Ten Tips for developing language in children

Okay, here's the short version. I'm planning another post in which I describe my mother's Language Soup approach; that will be basically an elaboration on some of the items in this list. All of this (except for #10, of course) applies equally well to hearing children, but I think it's especially important for d/hoh children. Now, obviously I'm not an expert on any area of child development, and my practical experience with all of this is limited to exactly one child. Also, I'm not claiming that any of these tips are easy to carry out. Even some of the ones that sound easy (like #1) are surprisingly challenging and exhausting in actual practice. That said, I humbly offer up my Top Ten Tips:

1. Talk to your child. From day one. Even when you know he can't hear you. Yeah, it's a bit demoralizing sometimes, and it takes a lot of stamina. Do it anyway.

2. Pause and listen. Even when you know he's not going to say anything. It helps to teach turn-taking, and one day he's going to surprise you with a response.

3. Read to your child. As I mentioned in another post, we introduced books to Ben very early on. He usually wasn't interested, and he'd push the book away. But we kept at it, and by 3 months he loved books.

4. Narrate. "I'm putting the ball on the table. Do you see the ball on the table? Uh-oh, the ball rolled off the table. Where is the ball? The ball is on the floor. It is by the sofa. I'm picking up the ball. Do you want the ball? Here's the ball. I gave you the ball." (ad nauseum)

5. Use rich language. "The ball is under the orange blanket, which is hanging over the end of the sofa," instead of "The ball is there." "Can you help me by not throwing the diaper on the floor? That is unhelpful. No, we're not ready to get down yet," instead of "No -- stop that." My mother says that too many children show up in kindergarten having heard very little besides short commands and simple nouns.

6. Point and gesture. Make connections between the words you are using and the world around you.

7. Make connections. If there's a hippo in the book, get the hippo stuffed animal off the shelf and talk about it. If there's a line in a song about rain, get out the book that shows it raining on the bunny and talk about it. If your child is interested in the kangaroo, look for pictures of kangaroos online.

8. Praise and acknowledge anything that even remotely resembles progress, even if you know it was purely accidental.

9. Teach some elementary signs, like "more" and "all gone". The Baby Signing books by Child's Play (e.g. ISBN 978-1-904550-39-6) are great. Beware -- many of the trendy baby sign books actually have incorrect signs. Get an ASL dictionary so that you can check accuracy.

10. If your child wears hearing aids or a CI, use them during all waking hours. I'm sure you've heard that from everyone, and with some kids it's extremely difficult. Ben has occasionally had Issues, but for the most part he's a pretty compliant aid and CI wearer. These days he asks for them by pointing and saying "on". Very cute.

A good resource is the book Baby Talk: Helping your hearing-impaired baby listen and talk by Victoria J. Kozak and Betsy Moog Brooks, ISBN 1-931480-00-1. Okay, so that wasn't as short as I expected. I do tend to ramble on -- just ask my students. If you got this far, thanks for reading!

Tuesday, February 3, 2009

More on the sign/oral debate

Jodi Cutler del Dottore has a 12 year old son with a CI, and she writes a really cool blog. Here's a link to her latest post with a lot of discussion afterward in the comments about whether parents should teach sign to their deaf children:

http://rallycapsdotnet.blogspot.com/2009/01/parents-always-make-mistakes.html

Wednesday, January 28, 2009

So, are you teaching him sign?

We get asked that a lot. It's a perfectly reasonable question, but I always feel a little uncomfortable responding to it. The answer is yes and no, and we've gone back and forth on it. How's that for equivocation?

When we first found out Ben was deaf, it seemed like a no-brainer -- of course we would learn ASL and teach it to him. After all, isn't that how deaf people communicate? And gosh, ASL looks so fascinating and beautiful, almost dance-like, when other people do it. It'll be fun to learn, right?

In fact, many people who gain at least some benefit from hearing aids or cochlear implants do end up using spoken language, either primarily or exclusively. It turns out that choosing a communication mode (sign, cuing, oral, or some combination of these) is a complicated and often controversial decision. It's certainly not a no-brainer. Like it or not, the world isn't currently set up to support those who rely on sign language. The vast majority of people on the planet don't know it and don't plan on learning it. None of our friends and family know much sign. And it turns out that it's not so easy to learn. You don't just wiggle your fingers in vague approximations of the objects or actions you're depicting. It's an entire language, with grammatical structure that is quite unlike any spoken or written language. While many signs are iconic, they are so abstract that you can't interpret them just by guessing.

Also, we started pursuing the cochlear implant option pretty early on, and more than one person in that camp gave us the unequivocal message that signing was frowned upon. We were told again and again that getting a CI was just the beginning of a long, hard journey of aural rehabilitation, that it would take years of intense therapy for him to learn to listen, understand, and speak intelligibly. The most popular form of therapy for this is AVT, or Auditory-Verbal Therapy. One of the tenets of AVT is that no visual communication of any sort is used, that in fact even lip-reading is discouraged; the therapist often hides his or her mouth with a screen while talking. The most dogmatic adherants claim that AVT is wholly incompatible with sign, even when it is introduced by the family outside of therapy.

The other side also has its passionate defenders. For many decades, deaf children were subjected to comparatively ineffective oral education practices, and often forbidden from using sign. This had a devastating effect on their educational outcomes, employment opportunities, and quality of life. During the latter part of the 20th Century, there was a resurgence of Deaf Pride and Deaf Culture, centered on a reclamation of sign as the natural language of the deaf. There is now a vibrant and diverse Deaf community. Many members of this community feel strongly that every deaf child should be taught ASL as a primary language, and some go so far as to assert that any expectation that deaf children can or should learn to talk is a manifestation of a form of bigotry called "audism" (I'm not making that up -- Google it). And I won't get into what they say about cochlear implants.

Those are the extremes, and you can imagine them spanning a continuum of more or less constant linear density. Amid all this brouhaha, parents of newly-diagnosed deaf children have to make some difficult decisions. The good news is that these days children thrive with a variety of communication modes, and also the decision doesn't have to be carved in stone.

We started off with the idea that we would teach Ben some signing as a support to his overall language development. At that point the wheels were in motion for getting a CI, but we didn't know for sure whether he would be a candidate, whether it would work, or how well he would do with it. Also, when we take off his equipment (for the bath or when he sleeps), he can't hear at all, and we figured that we would need sign at those times. In the run-up to implantation, we decided that we should "back off" from sign, at least for awhile after activation, in order to focus all of our and his attention on learning to listen and understand what he was hearing.

Within a few months after activation, it was becoming obvious that he was making extraordinary progress with hearing and language, including speech, even without all that intense therapy. Basically, he is back on track for typical language development. So now we're fairly relaxed about it all -- when he shows an interest, we introduce some more signs, and he takes to them pretty well. It doesn't seem to interfere at all with his oral communication. Quite the contrary -- when he pairs a sign with one of his more enigmatic utterances, we are able to identify it as an intentional word and help him refine it, and this has expanded his expressive vocabulary and reduced frustration. At the same time, we are now confident that he does not and probably will never actually need ASL. Now that the pressure's off, it is kind've fun to learn in bits and pieces. This early, casual exposure will probably make it easier for him to learn ASL as a complete formal language later if he ever wants to.