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....

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!)