Can You Hear Me Now?

Micah had his umpteenth audiogram a week ago - and because it was six months from the last one I managed to forget that to find parking in the JFK Medical Center parking lots is tantamount to driving all the way to Edison then driving half way back home, parking and then running carrying a thirty pound football, the football's diaper bag, and the purse with the referral (love those electronic referrals when you are still expected to product a piece of paper, so much for saving the trees), the insurance cards (unchanged since forever, but here's another ream of paper for you to fill in while making sure the two year old isn't snatching some stroke victims walker and dismantling it) and all the other alleged necessities.

The audiogram is basically unchanged from the umpteenth minus one audiograms that came before, though the results are allegedly more reliable since the audiologist (thanks to Ela) can now use conditioned play to evaluate him. Except that Micah's version did not include doing the first few trials together, both of us holding the plastic block to his temple waiting for the sound and then tossing the block in the bucket, which did not even have the shape-sorter lid on it, so he was bored in about two seconds and telling me to get my own plastic block if I wanted to play this game. He wanted Mommy to hold her own damn block, as well as one for Bunny Bear thank you very much. So this left me sitting on a butt-numbing hard stool, with Micah on my lap, Bunny Bear on my knee, holding plastic blocks against Bunny Bear's ear (the rabbit ones on his track suit, not even his 'real' bear ears) and another against my own head. Waiting to hear a sound. This mult-tasking balancing act sucked the life right out of me, so I could barely remember to toss my block in the bucket after Micah put his in.

He detested the bone conduction hearing aid that was used; it was a metal headband with the bone conduction aid on one end and it looked like it pinched. So all in all, same results, different day, come back in six months once I've again forgotten how horrid the parking is there. If the people weren't so nice there (the head of the department does Micah's testing), I'd be ready to find another facility closer to Princeton.

Micah's IFSP was renewed, so we have about the equivalent to another six months of services. All of the therapists, etc. will end on March 1, 2009, the day before he turns three. And now begins the transition process. Today a social worker from the township school district came for our first meeting, along with our service coordinator. It was just a meet-and-greet, scratch-and-sniff sort of get-together - though the service coordinator told the school social worker "that the parents want an out of district placement" so she wanted to get the ball rolling early. Way to let the cat out of the bag. This parent does want an out of district placement, but I have been conditioned, trained, groomed, whatever'ed into being a person who is going to play nice, investigate all options and play nicely until the district presents us with an IEP that is unacceptable. And then things will have the potential to get ugly.

I have nothing against our school district (other than the cut-off birthdate for Kindergarten is September 30, and no exceptions, and the Kindergarten is half-day so why bother fighting it anyway so say hello to private school, but all of that relates to Thea not Micah). I just know that the district has a major drive to keep children in its pre-school disabled program, and I am not going to have Micah in an environment where he is not getting what he needs because no one has the appropriate skills in auditory-oral education, and that means just because you have a speech therapist on staff doesn't begin to mean that constitutes an adequate learning environment for him. The district has better be able to furnish a report on the acoustics in its classroom, whether it can tone down background noise sufficiently so that Micah isn't being driving crazy by all the sound feeding into his BAHA, etc.

Anway, to start this off, I have to write a letter to the district, which has twenty school days to respond, and then it has ninety days to schedule all the assessments needed to make a decision about what its experts feel constitutes the least restrictive environment for Micah.

Either way, the choice is tough - in district, it's close, but not necessarily completely appropriate for his needs, or Summit Speech School, which is an hour travel each way - and hits the school district with a $55K/year tuition bill plus transportation costs.

The other parent with a son adopted from China also with bilateral atresia/microtia who invited us for lunch shortly before our trip to China to bring Micah home told me about her dealings with our township school district (not pretty) and gave me the name of a good special education lawyer.

Meanwhile and far away, Cochlear, the manufacturer of the BAHA Intenso that Micah uses, is having some sort of difficulty with the FDA, so there are BAHAs in Sweden awaiting shipment to the USA waiting for whatever the problem is to be sorted out. And from what little reading I did on the BAHA Yahoo! group, the problem is related to the titanium screw that is implanted in skull for those patients not using it on the softband (which is how Micah wears his). Which is what I'd worry about, the parts that get surgically implanted in the human body, not the little box that does the sound amplification. Unless the damn thing is emitting radioactive particles, someone had better get off their bureaucratic backsides and solve this because we have less than five months to have Early Intervention's help getting Micah a second BAHA to help him localize sound. More than anyone ever wanted to know about any of this stuff, and no pictures to compensate for all the blather.

Friday's Good Karma

Today was my day for finally mustering the mental fortitude to deal with renewing my driver's licence at the NJ Motor Vehicle Commission. This was the third time there for obtaining or renewing my license (last time in 2004, with Thea in tow, home all of a week or so from China), as well as several miscellaneous trips to obtain duplicate registrations or purchasing the Conquer Cancer vanity plates. All previous trips have made me wonder how the former Soviet Union could have created mindless, soul-less bureaucracy as an export product.

After driving Thea to school, caught behind every idiot with a driver's license who had forgotten how to use a turn signal to show intent as well as a total inability to allow enough room for others to go around while he or she holds up traffic with the unannounced left turn, Micah and I had our session with the speech therapist this morning; her whole idea of introducing Micah to scissors was a big fat non-event. He got to make two snips in a strip of meatballs and then glue them onto a paper picture of spaghetti - even with the coveted scissors he was bored in about three meatballs. And now I have to spend 15 minutes morning and evening hyper-correcting him for pronunciation, I think I'll leave that to Steve.

Micah's turning into quite a mynah bird, repeating everything he hears. Unfortunate when it's "stupid idiot" called out to the car in front of us.

So after speech and after applying a light coating of spackle to my face, Micah and I set out for the NJMVC. We got there at 11:45 am, and in addition to getting the driver's license we also went for a duplicate registration (different lines, no one-stop shopping, so it's not quite all sunshine and puppies) and were back in the car by 12:05 pm. And in the whole process, only encountered one snotty humanoid employee (the receptionist). Micah just loved standing on the yellow taped lines - he lined himself up next to me while I was having my picture taken and then lining up next to the guy in front of us at the registration section. (Get this, the chick flashed my current-about-to-expire license photo on the screen and said do you want this or a new one? I almost kept the four-years-younger me, but decided to go for the real deal)

Now I'm just sitting around waiting for the meteor to land on my head because that kind of stuff doesn't happen to me, so there will be a karmic trade-off somewhere down the line.

Meanwhile, back to life with an almost five-year old, Thea blew up her first balloon last night. She's been trying and trying, but just not getting the coordination of breathing, pinching the balloon shut while inhaling, and the power to force the air in. Then, it just happened. It was rather cool - and a redemonstration was captured on film to put installed on the blog at a later date.

Our Summer in Pictures

Not necessarily in chronological order. . . .

Thea on the beach at Manoloking, August 2008

Micah on the beach at Mantoloking, August 2008

Micah getting in touch with inner Gypsy Rose Lee, Summer 2008

Hanging out with our Cousin Willi, waitng for the train
Watkins Regional Park, Labor Day Weekend 2008

Autumn Moon Festival, September 13, 2008

Chinatown, Philadelphia

Marching in the Autumn Moon Festival Parade

Getting in touch with nature at the Sotterley Plantation

Photo by Thea, June 2008

Ready to save the world, Summer 2008

Catching up on summer reading at Oma's, June 2008

Making a splash in the sprinkler, August 31, 2008

Riding the train with Oma

Watkins Regional Park, June 13, 2008

Modelling swimwear, June 2008

Working on our Summer Home, July 2008

Pool Party, September 13, 2008

Lion Dancers, Autumn Moon Festival

Back where we started, waitng for next summer . . . .

And now a word from our sponsor. . .

I know I've been promising photos since forever, putting it off due to technical difficulties - needing a new cable from the camera to the PC as well as just procrastination in general. Until came the day when I had 888 photographs on the camera. And despite a new cable, despite having the actual time to sit down and do it, nothing happened. It just seemed like the number of new photos (350+) was just more than EasyShare (total misnomer) could handle. Without photos, a blog becomes a blah-g rather quickly, at least mine does.

BTW: If anyone has a better photo manager, I'm all ears. I also have close to 3,000 pictures that would need to be transferred,

So today, while the kids were with Steve, off to visit his mother, I set out to copy the memory card onto a CD. No luck at FedEx Office (formerly FedEx Kinkos, formerly Kinkos), it's device was out of service. So on to ShopRite, where I selected the whole contents of the card to copy on to a CD (and having no clue as to how many photos a CD actually can store), no go. Then I selected 388 photos to copy from the card, and onto two CDs. Except that ShopRite only had ONE Kodak photo CD left in the entire store, and the non-food items manager was away and this could not be rectified until his return in a week or so. Bite me, ShopRite - especially after I invested 30 minutes or so in figuring out how to use the Kodak kiosk.

There was a part of me that said, "Bag it, this is just not in the cards today." And there was the part of me that was hell bent and determined that I WOULD prevail. So I went to Wegman's since I had coupons for a free 50 ounce bottle of 2X strength store-brand detergent and another for eight ounces of basting oil (whatever that is, but it was free and sounded interesting.) The Kodak kiosk here is a remnant from the dark ages of digital photography. It moved at the pace of that Tim Conway character from the old Carol Burnett Show, and there was only one. So my need for one CD of 200 photos and another of 188 and the anemic pace of the copying irritated at least one customer (who had previoiusly tried CVS and found its machine out of service), but that machine was mine, mine, mine. I skipped copying another smaller memory card because I didn't want to completely monopolize the kiosk, and I was bored to tears waiting. I could have never accomplished this on a week day with Micah in tow. He would have completely dismantled the displays of disposable cameras and picture frames or wandered off to find someone more interesting than his mother to hang with.

So, the bottom line is photos are coming, you should enjoy each and every one because of the cost involved, not in terms of monetary expenditure (Wegman's $2.99 per CD was $2 cheaper than ShopRite), but what it cost in terms of my time and patience. And my Sunday afternoon communing with the New York Times crossword never even got off the ground, though Wegman's did redeem itself by having a few papers left at 4 pm so I didn't have to go to WaWa or Speedy Mart or wherever to track a copy down.

Ela's baaaack....yay!

Micah's teacher, Ela, is back from her maternity leave. She delivered her daughter via C-section on July 22, 2008 and is back part-time. Micah talked about it all morning. El-LAH? El-LAH? We wrapped a baby gift for her, we talked about her bringing toys to play with, blah, blah, blah.

And he proceeded to call her Nancy for the first hour she was here. Nancy being Ela's substitute for July and August, Nancy whose name I couldn't get Micah to say clearly despite much practicing. Nan-SEE, Nan-SEE. Clear as a bell today, damn kid. Fortunately he snapped out of it and she's back to being his first love, as far as teachers go. And Ela seems to understand me - I'm fairly blunt (or honest) about disliking going to group (the mommies portion, Micah loves his two hours at Summit School; I'd rather have a hot poker stuck in my eye than hang with a bunch of cochlear implant kids' mommies who re-hash the same issues week in and week out.)

Today both Thea and Micah went to see Dr. Andy, their dentist. Micah survived the first invasion of his mouth by fingers not his own and was pretty non-plussed by the experience. Thea got a cleaning and fluoride treatment and will need to go back in October to have a little soft spot - not quite yet a cavity - checked and either sealed or filled.

We snagged the first appointment of the day at the dentist so we were in and out by 9:15, so Thea only missed a few minutes of school. Good thing, since she was the first "Leader of the Day" - sort of a teacher's helper, line-leader, featured kid at sharing time. She didn't really have much to say about it, so she probably had a good time being semi-in charge.

Interesting Article

I hope this will be my kids in 10 or so years:

http://www.boston.com/lifestyle/articles/2008/08/30/the_point_of_return/?page=1

In case the link doesn't last, it's an article about three teenagers who were adopted from a SWI in Wuhan (Micah's province) who went back this summer to volunteer there. I'm just amazed that they got cleared to do it by the authorities.

Kindergarten

The day arrived, my baby went off to Kindergarten today. Thea had on her yellow polo shirt and blue shorts, and was sporting her backpack (which is my old semi-see-through backpack from when I worked in a prison and clear purses or backpacks were the order of the day.) She managed to forget her lunch box, despite pep talks on how she would now be responsible for having her lunch with her when we left the house.

Micah and I celebrated by going to ShopRite to do our grocery shopping, then we stopped by Marquand Park for a bit. At home, he 'drove' my car while I unloaded and unpacked and then we went for a bike ride. He's upstairs resting from his labors, I'm avoiding cleaning up and doing the rest of the unpacking from our trip.

I'm proud of myself. I took pictures of her and I managed not to cry.