Monday, June 28, 2010

What a difference a week makes...

I am sooo behind on blogging -- much to report on, and almost three months' worth of calendars to put up -- but here's a little something to tide us over.  (Call it a "splash and dash" -- an unfortunately dated reference to Formula One racing, now that they no longer allow refueling.)

Our week in Cape Cod was blissful.  The weather was perfect, Ben adapted beautifully to the surroundings and the new experiences, and we all had a great time.  I even acquired a modest tan, which those who have seen me will realize is a significant accomplishment -- pigmentation is not my forte.  Ben takes after his father in that regard, and within a couple of days he was sporting a tan line at the top of his swim trunks that the Coppertone baby would envy.  And this despite the fact that we kept him (and ourselves) positively dripping with very strong sunscreen the entire time.  We maintained the policy of taking all hearing equipment off when Ben actually went in the water, and this went so much better than I feared (and much better than our few experiences last summer).  We always talked to him ahead of time about what we were going to do, what it would be like, what our expectations were, and reminded him of a few key signs.  And he was cool with it.  He responded well to our attempts to sign with him, and that was a lot more effective than I would have predicted.  (I'm increasingly convinced that we're taking exactly the right approach with him -- he's entirely oral, and he talks nonstop even when his equipment is off, but we're also teaching him ASL on the side, and there have been many occasions where that has turned out to be very useful.)

And this morning we had our CPSE meeting.  It sounds so simple when I say it like that, but man, what an ordeal.  It actually went very smoothly and ultimately we got everything that we wanted, but I'm glad that we put so much time in advance into preparing for it.  There is a lot of variation in how the IDEA is enforced.  Some districts take the approach that if a child has a qualifying disability, he is automatically entitled to an IEP.  Not ours.  (In their defence, the IDEA does specifically say that a child must have both a qualifying disability and a demonstrable need for special education.)  Our special ed director usually requires that a child be two standard deviations below grade level (or 1.5 standard deviations in two areas), and she made it clear that she had never before considered a child for special ed who tested as high as Ben does.  She described it as a very unusual case, and she wanted a rationale from several parties as to why he was entitled.  But a good rationale was duly produced, and after a little agonizing, it was agreed that he would get an IEP and that he would be placed in the Youngerman Clinic integrated preschool as an identified child, with continuing SLP services -- exactly what we wanted.  (The fact that his best bud Jackson will also be in that preschool as a typical child had, of course, no bearing on the desirability of the placement!)

So, whooosh -- strike another major item off my summer To-Do list!!!  (Only 50,000 more to go....)

Sunday, June 20, 2010

Back online, and hangin' on the beach

Ben has had full sound since Tuesday afternoon.  We used the loaner processor from then until Thursday, when we exchanged that for his new one (under warranty).  He has been a much happier camper ever since.  On Friday we drove to Neil's parents' house in the Catskills, and then on Saturday we all drove out here to Cape Cod, where we're renting a beautiful house right on the beach for a week.  Ben was at first a little skittish about the feel of sand inside his shoes, the cold water, the wind, but he quickly got used to the elements and has been having a blast.

It is an indication of my in-laws' deep trust in me that they have left me alone in the house (except for a napping Ben), seemingly without any concern that I'm going to rescue the lobsters from the fridge and release them back into the ocean.  I'm a vegetarian, but I guess I'm not a very militant one.  Sorry, lobsters; your fate is sealed.  I think I'll stick with salad, though.

Tuesday, June 15, 2010

Still in a holding pattern

Well, the new headpiece came right around lunch time.  We took it over to Ben's daycare and tried it ... and no good.  Didn't fix the problem.  Even though we had explained to him that it might not work, he was still very disappointed.  (And us bursting in on him at daycare, and then leaving again, was a very confusing disruption -- the tears were starting to well up as we left.  It's been a difficult day.)  Neil just took off a few minutes ago to take the processor up to Buffalo.  Our audiologist is currently loading Ben's programs onto their loaner processor, so at least Neil will walk away with a working processor that we can use.  When she gets a chance, she'll try to determine whether it was just the maps or the whole processor that got zapped.

I think it must have been the plastic slide.  We went to a party at a friend's house Saturday evening, and Ben went down a plastic slide about a dozen times or more.  And in general, plastic slides are a source of anxiety for CI parents, because of the static discharge.  A generation ago, it was not unheard of for a big static discharge to damage the internal implant, requiring surgery.  These days the internal implant is very well protected from static, and I don't think anyone's lost an implant due to static since the 90's.  Every now and then a really big discharge will wipe out the program the child is currently using (which is not too big a deal -- you can switch to another program and use that until you can get to the audiologist), and I did read on cicircle about a processor getting fried on a slide earlier this spring.  But given the relatively low level of risk, most parents decide to let the kid ride the slides, although it's a good idea to ground him when he gets to the bottom.  We always do that, and sometimes there's a pretty significant shock -- those slides really do build up a lot of static.

But this past Saturday, it was very humid, and I wasn't detecting any static build-up at all.  (Usually you can feel your arm hairs rise as you get close to the plastic.)  And I was still ritualistically tapping him out (almost) every time he went down -- I might have let it slide (no pun intended) a couple of times.  So it's a little hard to believe that that's really the cause of the problem.  On the other hand, it was shortly afterward that we detected it.  Coincidence?  Static?  Sweat corrosion?  (That might have explained a faulty headpiece, because he was certainly drenched by the end of the day, but his processor was well-protected and dry inside the harness under his shirt.)  Hard to say.

Anyway, I hope we have a working system by the end of the afternoon.

Sunday, June 13, 2010

Not a particularly good day....

We're having CI Issues.  Not too major, and hopefully they'll be resolved soon, but it's still stressful and a hassle.  The short version is that it looks like there's a problem with his headpiece (or "coil", for you Cochlear users out there), although the diagnosis is not conclusive.  The good folks at Advanced Bionics are going to call again in the morning to see if there is any news on the symptoms, and then probably just send us a new headpiece by overnight mail.

One consequence is that the poor guy had to spend the morning without his CI.  He does very well with just the hearing aid, and it was amazing and encouraging to see much he could hear and understand.  But it was clearly disorienting for him, and he kept fussing, "I want my headpiece!  I want my headpiece now!"  After said headpiece spent a few hours in the Dry&Store, we tried it again to see if that fixed the problem, but alas, it did not.  However, Ben reported that everything sounded fine to him, and so we went ahead and let him wear it for the rest of the day.  It wasn't clear how well he was actually hearing with it, and in any event the indicator light was still flashing red all day, so there's something wrong.  I'll share the ending of this story once I know it myself.

Wednesday, June 9, 2010

Speech and Language Assessment

Ben just had a formal speech and language assessment, as preparation for determining special education eligibility.  Wow.  The SLP who administered it is not Ben's speech therapist, and in fact she had never met him before.  In both receptive and expressive language, he was testing at the 4.5 year age range, and at that point she would stop testing him and move on to the next category so that he wouldn't fatigue too early.  She also assessed his articulation, and noted the same fronting and consonant substitution errors that his regular speech therapist has been working on with him, but also that he was highly intelligible.  Despite all of the very long, exhausting tests, Ben stayed focussed and even had a lot of fun with it.  Whatta guy.

At one point, the SLP pointed to a hand-drawn picture of a baby and asked, "What is this, Ben?"  Ben studied it for a long time, and I was beginning to think that he didn't understand what he was supposed to do.  And then he responded, his voice heavy with doubt, "Well, it's supposed to be a baby."  Everyone's a critic!

I'm looking forward to reading the report, which she'll send us in a week or so.

Tips for improving Auditory Working Memory

Rouchi had a link to this post, which has tons of fantastic tips for improving auditory working memory (AWM).  A lot of it comes down to what educators commonly call "chunking," i.e. breaking complex ideas or tasks into small pieces that are more easily processed and remembered (like the way we customarily break SS numbers into three small chunks).  You can help a child improve AWM by gradually increasing the number, length, and complexity of the chunks.