Showing posts with label Early Intervention. Show all posts
Showing posts with label Early Intervention. Show all posts

Wednesday, November 19, 2008

Wednesday Triptych

Good news on the answering machine: Micah's service coordinator at Early Intervention called today. The application for the second BAHA has been mailed. It gets sent in to "the State" whoever or whatever that is.

Please let the bean-counting, penny-pinching faceless bureaucrat be in a good mood when the envelope arrives in his or her in-box. Light candles, sacrifice chickens, make offerings to the deity of your choice, keep a good thought, Mama wants a BAHA approval in time for Christmas.

And if approved, I then want JFK to order it quickly, Cochlear to send it via overnight express (the company charges enough for the damn thing, it can spring for FedEx, dammit.)

And I want our audiologist not to be taking any time off if and when the approval comes through so she can order it and get it on Micah ASAP.

I know I want a lot, but Micah deserves it.

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Meanwhile back at the ranch, my Kodak Easyshare printer is only printing half of the pictures and the help page on Kodak's web site and http://www.fixya.com/ were more or less useless. Someone put in the suggestion to unplug it for awhile, as if that is somehow a magic bullet. Duh, tried that one myself before even going on-line to look for answers or suggestions. May that twit's email inbox be deluged with Viagra-by-mail and penis enhancement spam forevermore.

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After group at Summit School today, Micah and I went to visit Marleen and Aliya. Marleen and Pete were in our first adoption travel group, and their daughter Kitty is a few weeks younger than Thea. Pete just came back from Kyrgystan with Aliya who is now seven months old.
Micah was quite taken with Marleen, behaved well around baby Aliya and was quite intimidated by Boomer and Sweet Pea, the two English setters. Who as dogs go are total pussycats - they napped in the sunroom while Micah played with their dog toys. The baby is adorable and just happy to crawl and roll around the floor amusing herself. When I said it was time for us to leave, Micah pulled his "almost all done" routine and then patted Marleen on her thigh for emphasis. He managed to scam several stuffed animals from her, so it was an all around good afternoon for him, even though he got shorted on nap time.

Friday, October 31, 2008

Annoyance

The universe abounds with people who desperately need two tight slaps about the head and shoulders to snap them out of their own stupidity. Topping my list at the moment is our service coordinator at the country Early Intervention Program.

In September when we met with her for Micah's six-month review and renewal of services, we discussed a second BAHA for Micah to help him localize sound. She said that the application could go in one calendar year after the first BAHA was approved.

What the silly wench did not tell me, until I emailed her two weeks ago and then re-emailed her when that email wasn't answered, was that all the paperwork submitted last year would need to be re-submitted, including:

- a copy of our insurance card (whch is unchanged from last years and which she already has)
- a note on an Rx form from an ENT that Micah is medically cleared to wear a hearing aid (figure that one out since he's been wearing one for the last year)
- a letter detailing why he needs a second BAHA (which the six-month review written by his teacher from Summit that was submitted to her weeks ago), this time from an ENT
- a cost estimate from the audiologist at JFK (since we're fortunately allowed to use the same hearing aid vendor and don't have to get multiple estimates.)

I am livid. I spent what few minutes I had free this afternoon not working on my chart notes or stripping the paper charts for scanning that are sitting in an ever-mounting pile on my desk, but calling Dr. Choe's office and Dr. Toth's office to get things rolling. Then tonight after writing chart notes for two hours, I emailed Dr. Choe with more information than I originally gave in the phone message.

Our EIP service coordinator was one of the good guys; she has helped us enormously. Up until September. This is a screw up of monumental proportions and is right up there with her telling the school district that she wanted to get the ball rolling for Micah's transition "because the parents want an out of district placement." I don't know if she's overworked, distracted or just has had a new onset of utter brainlessness. If he ages out of the system without the second hearing aid coming through, I will beat her to death with her own Manolos.

Tuesday, October 21, 2008

Fingers-crossed. . .

. . .or whatever offering of positive thoughts you would like to send my way tomorrow. It's the day Micah and I meet with the local elementary school's Child Study Team to begin the transition from Early Intervention into an IEP, if he's deemed eligible. I just hope I can be as eloquent as possible about his hearing to begin convincing them that the local preschool/disabled program is not the right fit and that the district should cough up the $55K to send him to Summit. And if that fails, say an incantation that I don't beat them smartly about the head and shoulders with the two-inch thick binder I have of Micah's reports, audiograms, hearing aid information, atresia/microtia information. I am going for that illusion that I am very well-prepared, and thankfully I'll be coming from work so I won't have on the usual schlubby-mommy clothes that I'm usually in on Wednesdays.

I am hoping that Micah will be sufficiently comatose from a shorter nap than usual so that he won't be displaying his 27+ month language ability. Tonight in the car he said "I think the horsies are sleeping. . ." If he pops a series of that sort of sentences out, we're screwed.

2 pm Wednesday. Don't be late for holding a good thought for the two for us.

Monday, September 29, 2008

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.

Monday, September 8, 2008

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.