Friday, June 24, 2011


1.  Tonight, after Ben got into bed, he put his arms out toward me and said, "I need a hug.  This is going to be a really long hug.  Know why?  Because I love you."

2.  The New York State legislature just voted to legalize same-sex marriage -- woo-hoo!!!  Yep, I'm a proud New Yorker right now.

It's a good night for families everywhere.  All kinds.

Thursday, June 23, 2011

Great video -- our CI surgeon

Here's an excellent video featuring an interview with Dr. Roland, Ben's CI surgeon.  Among other topics, he gives a nice description of how a CI works.  Enjoy -- and turn those ipods down!

Wednesday, June 22, 2011

IEP under development

We had our second annual CPSE meeting a week ago last Tuesday, and it went very well over all, in the sense that we got the services we wanted and the goals sound like they're shaping up nicely.  The downer was that New Issues are emerging.  No big surprises -- these are things we've become increasingly concerned about over the last year or more.  Still, it's a little depressing to hear the various teachers and therapists waxing poetic about it all.

The short story is that we're throwing some physical therapy into the mix, and also working to address his Extreme Shyness (a strong disinclination or inability to interact with peers).  A year ago, in the comprehensive evaluations before his first CPSE meeting, he was showing a mild delay in several gross motor skill areas, and the delays have become more significant since then.  For instance, he can't jump.  When he's told to jump, he'll take kind've an aggressive two-step, but he doesn't get any actual air time and he can't keep his feet together.  I won't go through the whole list of Things He's Supposed To Be Doing By Now But Isn't, according to the therapists, because it's dull and depressing, but we're confident that everything will be okay in the long run.  It's small stuff, really, that should be amenable to PT, and hopefully we'll get ahead of it before he's in kindergarten.  Also, none of it is related to his hearing loss -- Connexin-26 deafness is non-syndromic, and the only effect is the deafness itself.  In fact, you gotta wonder if the physical delays really fall within or pretty close to the normal range of development, and nobody would be worrying about them if he weren't being so closely monitored because of the deafness.

I'm more worried about the Extreme Shyness.  This probably is due at least in part to his deafness, or at least exacerbated by it.  Now, I was Extremely Shy at that age, too, and in fact I never really outgrew it, just learned to compensate better for it.  It made for a pretty rough ride in elementary school, where I was always on the social outskirts and often the target of Kids Being Kids.  Not fun.  I'm sure that a good portion of Ben's shyness is just innate personality, his unfortunate legacy from me.  And it would be fruitless and ill-advised to try to change his personality.  But there is also reason to believe that his social anxiety is intensified by the difficulty of hearing in noise and trying to focus on a single sound source when surrounded by many speakers.  His teachers painted a grim picture of him being withdrawn and mute when in a group setting, refusing to answer questions even when he can hear them and knows the answer, unwilling to engage in conversation or interact with peers.  From various things that his teachers and daycare providers reported over the last few months, I was starting to worry a little about high functioning autism or Asperger's, but actually there's no real reason to suspect anything like that at this point -- in less threatening environments he doesn't display any of those behaviors, and to the contrary he totally gets humor, emotion, talks with inflection, makes eye contact, shows empathy, etc.  So we're all putting it down to social anxiety made worse by poor hearing in group settings, and some of his speech/language goals over the next year involve initiating and sustaining peer contact.  I have no idea exactly how they're going to work on that, but it'll be interesting to find out.

It's a bit of a change from a year ago, when all the evaluators were singing his praises, he tested fantastically on everything (except the mild gross motor delays), and we had to work hard to convince the special ed director that he needed services in the first place.  This year we had a new special ed director who again needed some convincing, because he still performs so highly on the sorts of speech and language skills that she usually pays attention to, but once everyone started talking about all the Emerging Issues, it was a pretty easy sell.  Unfortunately.

One result of the meeting was a formal PT assessment, which took place two days ago.  Once that report is written up, we'll have to reconvene the committee to discuss PT goals and services, and hopefully finalize some of the language goals as well.  But we're optimistic that we're going to get a good IEP out of this.

This evening, he used the toilet All By Himself.  From start to finish.  I wasn't even in the room.  He needed a little help at the end when he got his shorts halfway up and discovered they were on backwards, but still, you gotta be impressed.  Before that, he and I were engaged in a game of "Pizzicato or Arco?", where I tell him to play his violin pizzicato and he smirks and uses his bow instead, or vice versa.  And at times like those I realize, hey, the kid's all right.  Relax already.

Tuesday, June 14, 2011

Two Bennyisms

1.  Last week, before Ben's appointment with his CI surgeon, he went off to the bathroom with Neil.  When he returned he announced, to everyone's delight, "I peed in the urinal!!!"  (First urinal usage -- yay!)

2.  Tonight, while playing with his shaker eggs, he started singing Paul Simon's "Me and Julio Down by the Schoolyard."  He explained, "It's because the shaker eggs sounded like the tone of that song."

In other news, we had a successful IEP meeting this morning.  Details to follow.

Monday, June 13, 2011

Fifty ways to take a bath....

Here are some pictures from our recent trip to NYC for Ben's third annual follow-up appointment at the NYU Cochlear Implant Center.  He entertains himself (and George) in the car:

Walking with his father and grandparents in Riverside Park:

One thing we love about NYC playgrounds -- metal slides!!!  (No static!  CI-friendly!)

On our last night there, Ben was singing Paul Simon's "Fifty Ways to Leave Your Lover" in the bath.  It was pretty cute!  No pictures -- this is a family blog, after all.

Saturday, June 4, 2011

Standing Out

I am officially okay with the fact that total strangers stare at my child, trying to figure out what's "wrong" with him.  I'm not actually okay with this, but I resigned myself to it a long time ago.  He has large pieces of plastic and metal hanging off his head.  People are people.  I'd stare, if I didn't know what it was.  When I see something I don't understand, I look a little longer.  We're hardwired to do that.

But it still gives me a very strange sensation when I notice people staring -- which, in a crowded city like this, is every few minutes.  A strange combination of fierce mama bear defensiveness, pride, and slightly dizzying self-consciousness.  Adults don't stare for long, because it's rude, and most of them come to their senses very quickly and avert their gaze -- having pegged him as a child with some sort of disability, probably deaf (if they recognize the hearing aid), they feel pity for him and for me.  It's really weird walking down the street or hanging around a playground and knowing that you are the object of other people's pity.  It's kindly meant, but it just feels weird.

It's a very fleeting sensation and we've learned to ignore it most of the time.  For all I know people have been shaking their heads in a vague sort of pity over me all my life, and I never noticed it -- I am after all a math geek with particularly weak fashion sense.  Weird.

Thursday, June 2, 2011

New Jersey Bennyism

While driving down Route 17 on our way to NYC today, Ben piped up:  "Daddy, you're going to beat Sebastian Vettel!"

Ben has his third (!) annual follow-up appointment on Monday with his CI surgeon -- the amazing Dr. Thomas Roland, one of the best.  In the meantime we're going to take in a little City action.

Wednesday, June 1, 2011

Read Tammy's post

You gotta read this.

Don't know what else to say about it.