The Mind Boggles

Wednesday we got a phone call from our service coordinator at Somerset County Early Intervention letting us know that Micah's application for hearing aids was approved. Since the application went from the county to the state on the 10th, the turnaround time for this is supposedly quite fast (unless you're the parents of the child who needs the hearing aids who are looking at the calendar thinking it's THREE months since we got home from China, what is taking so long?). Yesterday the letter actually arrived from the SCHEIS (Special Child Health and Early Intervention Services - if you know German, you know what letter is missing to make it a very appropriate acronym) informing us that we could call the audiology department at JFK (another of the banes of my existence) to set up an appointment for a hearing aid fitting/distribution. So this morning, with one child occupied on the computer and the other destroying the living room, I got on the phone with JFK.

And the audiology department hasn't gotten its letter from the state yet, so no appointment. Once all of this fall into place and the hearing aids can be ordered, it's about two weeks until they come in, and then the wait for the appointment - so we'll have probably been home with Micah FOUR months by the time he's amplified. But it is boggling my teeny tiny brain that I have a letter telling me to get an appointment and cannot do so.

Then later this afternoon, there was a message in our voice mail for Steve, a woman named Debbie from Mercer County EIP stating that Micah had been enrolled with the state's birth defects registry and she wanted to discuss services available because she had received Micah's packet from the state. Huh? Services we've been receiving through Somerset County, where we live, for the past two months. Our mailing address is Princeton, but we're in this odd little corner of Montgomery Township that is in the southernmost part of Somerset County, so in the real world, the equivalent would be trying to convince people you live in Brigadoon. So whatever documents our Somerset County EIP service coordinator needs to do her part in the adventure of getting hearing aids are now languishing in a Mercer County EIP outbox waiting to be sent on to Jessica or into The Void. And the mind boggle rollercoaster rockets onward.

All of this once more proving that if I was going to be diagnosed with a cerebral aneurysm, it would have already happened because it would have blown wide open after the morning/afternoon I had.

Meanwhile and far away, it was a good day for the kids, other than Micah whacking his sister over the head with a toy wooden rolling pin. Thea survived, but with many tears and a nice goose egg - but the saving grace to pull us out of any post-whacking funk was that we met Steve at Panera's for lunch. Micah's ibuprofen dose kicked in; he's cutting at least four, possibly more, teeth so he's somewhat miserable in his cheerful Micah manner; Thea tried salmon from Steve's lunch. After eating, Thea was game to go to Snip-Its for a bang trim- which was a bonus for me because usually there is cajoling and bribing involved in the haircut process.

While Micah slept this afternoon, we tried on Thea's Halloween costume. She wants to be an international super spy, a la Pablo of The Backyardigans. We put together a child's white (polyester) dinner jacket, dress shirt, black bow tie with a pair of black stretch pants and black patent leather shoes. Add a pair of black glasses - and voila! She was quite pleased with the result. (Pictures to follow.)

Dinner tonight was courtesy of my new NP colleague, Karen. Her husband went tuna fishing and got two tuna so yesterday at work there was a nice chuck of tuna in an airtight, sealed freezer bag. And Thea loved the tuna - eating her entire piece and then some. Even Micah, who is trying out being an ovo-lacto vegetarian on for size, or so it seems, tried a bit.

Now it's 11:30 pm, our neighbors just called awhile ago and dropped off their Emily, one of Thea's absolute favorite friends, on the way to the ER in New Brunswick with their younger child who had a fall at daycare with a nice knot on his head and woke tonight throwing up. Emily scores huge points for her resilience - she just took her blanket and stuffed animal and climbed into Thea's bed. Thea's bed is in a state of shock that someone is actually sleeping in it - we're using it with Thea to read books, but she's still sleeping between us. Which was fine back in the days of a 25 to 30 pound two-year old but is not as wonderful now that she's a 50 pound boulder. Thea will be in for a surprise in the morning if Emily's still here.

So with all that going on, I won't bore you with details of Micah's and my trip up to the Parent-Infant Group at Summit Speech School. (Where, while Micah was engaged in productive activities geared toward enhancing his communication skills, I was sitting in a room of mommies discussing their cats and dogs and other stuff that might have been therapeutic for them, but was an hour or so of my life that I am not going to get back. When the facilitator tried to engage those of us who were reorganizing our mental sock drawers rather than talking about pets by asking, "Lydia, do you have pets at home?" I told her that yes we did, an almost seven year old guinea pig that I wish would die so I could reclaim that corner of the dining room and not have Micah trying to figure out whether he wants to put aspen chips with guinea pig feces in them into his mouth. Sort of a conversation killers, but it was too good to pass up.)

Socially Secure. . . .

Three days before the one month mark, Micah's Social Security card arrived, and it was correct - it didn't have the horrible "Valid for Employment Only with DHS Approval" printed on it (as Thea's first card did). So the score is tied, two trips to SSA for Thea, two for Micah. And now I can move on to his NJ birth certificate and U.S. passport.

We also got the medical clearance slip for the hearing aid, which should be the final piece of that puzzle, which puts us at the beginning of a two to three month wait to see what the state produces in the way of funding for Micah's hearing aid. (A bone-conduction soft-band hearing aid runs about $3,000 to $4,000.)

Tonight Thea and I have a date to assemble her party favors for Saturday's party - I'm hoping her excitement level doesn't burn itself out by the actual time of the party. Our oven is officially dead, so the cupcakes will be catered by ShopRite or Whole Foods - for both her party and for the school field trip to the Von Thun Farm. Micah is going to be doing time in the pre-toddlers room at Lawrence Day School so Thea and I can have a real Mommy-Thea morning.

Stupid is as stupid does. . . .

I got a phone call from our service coordinator at Somerset County's Early Intervention Program. JFK/Johnson Rehabilitation Institute, where Micah had his audiograms, will not release the audiogram reports to her without a signed release.

On the day of his first audiogram, when I checked us in for the appointment, I handed the clerk a sheet of paper with the names, addresses, phone numbers and fax numbers for Micah's primary care provider, Summit Speech School and the county EIP requesting that they be sent copies of any reports in addition to the ENT who ordered the test.

It has been like pulling teeth to get anything out of JFK. They wouldn't send the graph of the first audiogram to Summit Speech School (where Micah had his developmental evaluation) because he was having a second audiogram. They took their sweet time getting the report out and it was only a text report, the charts of the two audiograms were described but not included.

I am SICK of stupid, incompetent people who are delaying my kid from getting the help he needs and is entitled to - and this really makes me wonder what happens to kids whose parents just go with the flow and accept the idiocy.

Fortunately, Micah is a happy little clam who is blissfully unaware of all of this crap, and by the time he gets his hearing aids, I will be done with the screaming and cursing.

Brother Tiger stays home, Micah goes to school

This weekend we had an adventure with Thea's two stuffed white tigers, Regular Tiger and Brother Tiger. These guys have been with her since December 2004 or so, and we took (and returned with) both of them from our trip to China this summer. Thousands of miles, at least a half dozen airport security check points, bus and taxi rides, these guys were in the thick of it. Friday night all of us were going to Maryland to see my mother. My mother graduated from high school 60 years ago and I was escorting her to the reunion luncheon. Past 50 years after graduation, they lump all the alumni together into one large "Golden Techite" group. At this particular lunch classes from 1927 (yes, this is not a typographical error) through 1957 were represented. The group gathers at a luncheon each year, and approximately 600 to 700 people attend.

So we pack the car and head down to La Plata. The only time Thea's car door was open was at the rest stop on Route 301 on the Eastern Shore of Maryland. We arrive after 11:30 pm or so at the hotel - my aunt had the guest room at Mom's booked because she was also coming to the high school reunion luncheon. And the car is unloaded and no Brother Tiger. Anywhere. Regular Tiger made the trip in my suitcase, so I knew we had at least one of them. But one tiger and not two is a disaster of monumental proportions.

Fortunately all parties remained calm. The good thing is that we stopped there around 10 pm or so, so not much time had gone by. And through the auspices of Provigil, I drove back to the rest area to see if there was a tiger in the parking lot, inside (through the kindness of some stranger), on the picnic tables or in the trash cans (if someone decided to be a complete jerk). I got back to the hotel at around 3:30 am empty handed.

Thea passed the weekend in good spirits, not saying too much about Brother Tiger. While I was off at the reunion with Mom, Micah and Thea went to Oma's Special Park with Steve, and thanks to the late night on Friday, both of them took naps. Having had almost three hours retracing our footsteps and deconstructing the evenings events, my guess was that Brother Tiger was sitting at home, having never made it to the car because Thea was too busy minding everyone else's beeswax except her own.

Sunday we went to our cousin Elise's first birthday, and left for home just in time to contend with all the traffic from FedEx Field. Fortunately the back roads weren't too bad and we didn't lose much time. By the time we were about half way back to New Jersey, Thea finally asked, "But was if Brother Tiger isn't at home when we get back?"

But he was, much to everyone's relief. He spent the weekend sitting on the back of the sofa. And I felt like a dolt for driving almost 150 miles to/from the rest area.

Today was Micah's first day in the Parent-Infant Program at Summit Speech School. It's an hour's drive north of Princeton, and after a weekend of going to Maryland to visit Oma he was probably not thrilled at being strapped in his car seat yet again. I was hoping that because it was Columbus Day, the school would be closed. No such luck.

The program has about 30 minutes of playtime, then the children stay in the classroom and the parents (all moms today) went off to a conference room for group. The children rotate through various therapists and volunteers. At 11:40 am we got to go back in to the classroom. Micah did ok, but he did seem relieved to see me. Most of the children have cochlear implants or hearing aids. There is one baby with Down's and hearing impairment. Micah is the only child with atresia/microtia.

Book of the Week: The Unheard by Joshua Swiller. Thank you Janet for the link to his interview on NPR, and thank you half.com for the book for $1 plus media mail shipping.

Rant of the Week: I had to get a prescription for hearing aids for Micah, and got one from his ENT and one from his PCP due to my firm belief in overkill. The county's early intervention program also requires a note from the ENT stating that Micah is "medically cleared" for hearing aids. WHY WOULD HE BE GIVEN A PRESCRIPTION FOR HEARING AIDS IF HE WEREN'T MEDICALLY CLEARED? This is a perfect blend of stupidity and redundancy that has people like me taking medication to control blood pressure.

Previous Rant's Postscript: It is now almost a month since I applied for Micah's Social Security card. Nothing. I see another trip to Trenton in the offing. Ugh. Speaking of stupidity.

Social (In)Security, Part II

We made it to the two week mark, and no Social Security card arrived for Micah. Quelle suprise.

Today Micah and I had a full schedule: we dropped Thea off at school, ran down to Hamilton to the Delcrest Medical Supplies to get a new battery for my oto-ophthamoscope, went to D-n-D for a life-sustaining cup of coffee and then went back to Thea's school at 10:30 for a presentation to the first- and second-graders on health, then running up Route 1 to Gymboree for Micah's first Baby Signs class (he thoroughly enjoyed being there, but so far the signing is more for me than him), and once done there, on to Kennections to get my grey banished. Once I was back to being a brunette, my choice was pick up Thea at school or run down to Social Security to see if there was a problem with Micah's application. Bureaucracy won.

No problem. I got the number, printed on a paper sheet, so I'm semi-happy.

But I was told to give it until October 12th before checking again if the actual card doesn't arrive, and it will take another trip down there since none of this is done via phone or email. And if it's going to take a month, then tell me at the start - the letter given on the day we first applied said two weeks. Thea's card, although needing fixing, arrived in six days or so. Is it any wonder why I have to take medication for my blood pressure?

By October 12th, if the Social Security card hasn't arrived, I am going to be way too busy with preparations for Thea's 4th birthday celebration: cupcakes to be baked and decorated, party bags to be made up, presents to be wrapped. And that day her school is going on a field trip to Von Thun Farm, so even though she's usually home with me that day, we're going on the excursion.

Social (In)Security

Micah and I went to the Social Security Administration office in Trenton yesterday. I was going to try out the one in New Brunswick, but since Thea and I had already been to the one on South Clinton Avenue in Trenton, I decided to stick with the familiar. Fortunately for us, at 10 am on a Monday morning the computer spat out a ticket telling us our number in the queue was 84 and the counters above the windows said that 81 was being helped. We came armed with just about every piece of paperwork that has been accumulated since Micah's adoption: his Chinese passport, our passports, his Certificate of Citizenship, birth certificate translation, adoption certificate (original and translation), you name it.

Once our number was called, we went to the window of a very nice clerk, one who had never in her life processed an application of an internationally adopted child. I am hoping that this works in my favor, because last time for Thea's application, I got a veteran who told me I was the best prepared person she had ever worked with. And then Thea's Social Security card came with "Resident Alien: Ineligible for Employment withouth DHS Approval," and when I read that I thought my head was going to explode. Because SSA does not correct its mistakes over the phone, getting a plain, unannotataed card took another trip into Trenton to mix once again with the cream of society. The clerk asked if Micah had a US passport - which needs a SSN, at least according to the application I picked up while at the post office on Saturday.

Did you know that you are only entitled to ten replacements per lifetime of your Social Security card? I wonder what happens if someone is so unfortunate as to need #11?

While the clerk and I were sorting things out (she actually got her supervisor to check her work and my documents), Micah was busy pushing his umbrella stroller back and forth behind me. This caught the attention of three dingy blond, pork rind snarfing harpies who were sitting together and commenting on everything in voices that could broadcast to foreign countries without amplification. Another suburban-ish mom was there to apply for a SSN for her baby, and the harpies were on her case with "Look, she doesn't even know how to carry a baby carrier." Baby was happy, baby's mother looked like she was managing fine, why can people just put their tongues and dentures in neutral and shut the heck up?

Meanwhile back at our window, the clerk didn't include Steve's SSN on Micah's application even though I had written it on the application so I was trying to get that fixed when Micah pulls the stroller over/on top of him. I didn't even hear him fall - which is a good thing because when his head hits the floor there usually is a sickening thud and he starts crying, neither of which happened. But the harpies had a fit, telling me he could have split his head open, I should watch him, blah, blah, blah. Oh, go bite me on my cellulitic pink tushie. But I was a good person, who merely told them that I didn't comment on how they took care of their children so I would prefer they keep their comments to themselves regarding how I was taking care of mine. Not the brightest thing to do, pissing off three white-trash Trentonians, but their numbers in the queue were in the upper 80s and it was unlikely that they would give up their place in line even for the pleasure of beating the snot out of me, so I figured I could make my exit with nothing to fear - and even with bad knees and pushing a stroller, I could probably out run them, too.

So in two weeks, or so the clerk promised, Micah should have his Social Security card. We'll see if it's done correctly the first time. And then I have to decided which of the next rings of paperwork hell I am going to take on: Micah's passport or the New Jersey birth certificate. I think it will probably be the birth certificate, because the office that processes that makes copies of all the documents; for the passport, I'll have to surrender the one and only original of his Certificate of Citizenship and an original of his Chinese birth certificate and adoption certificate. An article on CNN says the passport crunch is over, but the thought of sending those things off into the void makes me a little nervous. The New Jersey birth certificate will give him a one page birth certificate instead of the six-page booklet of translations, certificates and notarizations.

Audiogram & 3rd Anniversary of Thea's Adoption

I'm adding another post keep those of you who have no cable TV, hobbies or social life, or those who have an extremely low threshold for entertainment, updated. Micah had his audiogram at JFK Rehabilitation Institute in Edison (what a miserable drive, everything I hate about roads in NJ and then some).

The test itself turned out pretty well, after being kept in a sound proof room that was about as warm as Hell's antechamber. He got so warm, I had him stripped down to a t-shirt and diaper by the time the appointment was over. As expected the decibel range covered by air conduction was nil (no ear canals, duh), but once they bypassed the structural abnormality, the bone conduction ranges were fine - so a bone-conduction hearing-aid for starters. I'm inclined to do the least invasive for now, the hearing aid, pending hearing from whatever surgeon is going to deal with the surgery later on - sometimes doing the pins for a BAHA (bone-anchored hearing aid) or cochlear implant will preclude future work on the reconstruction of the auricle. I don't much care for the cosmetic part, but Micah may care about this some day so I don't want to make any decisions that will override what he may want to do in the future.

The downside is we go back again in a week for a repeat audiogram, to make sure their assessment was correct and to see if they can distinguish between the left and right ear in terms of ability. I liked both of the audiologists who worked with him, one of whom has a doctorate. She was very much on the same page as me as far as getting Micah communication skills as opposed to solely focusing on his acquiring speech. The one school that Somerset County's EIP works with is more focused on oral/speech and once upon a time had a director who was opposed to sign language. This kid needs sign language as a temporary measure to express his basic needs: thirst, hunger, tiredness, etc. so anyone who is going to look down their noses at me will eventually be also butting heads. The second audiogram may also be able to put off further testing that would require Micah to go under anesthesia, so there is a plus to it.

Thea is doing ok at YingHua Day School, a Mandarin Chinese-immersion program. She taught one of my mom's neighbors "Head, Shoulders, Knees and Toes" in Chinese a few days ago, but then was mortified when I told her teacher about it. She sort of keeps her Chinese school stuff separate from us, which is so adolescent it's almost scary. Today is the third anniversary of her adoption, so we're celebrating Family Day with dinner and a dessert of her choice (blueberries and strawberries (with whip cream, we're not saints)).

Labor Day weekend I took my little mutants down to visit my mother over Labor Day, proving I could travel solo with two of them. I highly recommend The Who's CD, Who's Next for drowning out any whining or asking are we there yet, Mommy? Mom got Micah to eat yellow squash, pineapple and a few other things that he was spitting out at home. Mom bought Micah a little pinafore/bib thing at the farmers' market. I put it on him and it looks more like a sundress than a bib/coverall, but if one is going to cross-dress, let it be John Deere fabric and Mennonite-made. Fortunately he wasn't into accessorizing with his sister's shoes (loves the sandals with the pink flowers) or one of the purses that she has no use for.

I'm now trying to get invitations out for Thea's birthday party. She turns four on Saturday, October 13th, and this year we're finally doing a children's party instead of just the family parties of the previous two years. She actually walked into My Gym and said, "This is a cool place for a birthday party." Coming from the child who hates to be the center of attention in a lot of ways, I had my checkbook out in about two seconds flat. I've been scouring the dollar section of Target since Spring so I already have most of the stuff for the party favors, if I can find all the places I've squirreled it away.