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.