<Monday, February 8th, 2010> [Amy]
The saints went marching in
74 yards in. I'm not a football fan, but I am a runner, and I just have to say about Tracy Porter: RESPECT. The Superbowl championship couldn't happen to a more deserving city.
.:.
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<Saturday, February 6th, 2010> [Amy]
Rising
My brother's comment on a photo V posted recently got me thinking. He said:
If Tori and Nev grow up with the new Trades, they'll become New Yorkers for sure. "How you gonna keep them down on the farm..."
In a sense, Tori and Nev HAVE grown up with Ground Zero. Tori was born just outside Washington, DC on George W. Bush's inauguration day--January 20th, 2001. On September 11th, she was nine months old and we lived in Fairfax, VA. We scanned the horizon that day for smoke rising from the Pentagon, 13 miles away.
Nev was born in December, 2002, just over a year after the terrorist attacks. Tori was diagnosed with autism the following summer. Her diagnosis was our own private 9/11--we felt exactly the same shock, sadness, anger, and desire to DO SOMETHING. In the fall of 2004, our quest to get Tori the most and best help we could led us to New York City--ultimately into an apartment less than half a mile from Ground Zero.
For almost two years, we passed by the site twice weekly on our way to Tori's OT appointments at the sensory gym in Tribeca. Progress was largely imperceptible then, both at the WTC and in our daughter. But I trusted that they--and we--were doing the groundwork, laying the foundations.
We moved away from New York in the summer of 2006. At that point, only 7 WTC, adjacent to the site, was complete. I wondered if construction on the Freedom Tower would ever begin. I questioned if all the interventions Tori had received had helped her at all. Would she succeed in a mainstreamed kindergarten setting?
Now we're headed back to New York, to our old neighborhood, to an apartment on the 35th floor overlooking Ground Zero. My mom thinks the view is morbid, but I feel hopeful about the redevelopment of the WTC.
Tori just turned nine, and the Freedom Tower just reached the 100 foot mark. It's been a long, arduous, agonizingly slow journey back from a dark place for all of us, but the future looks bright and full of promise.
Rise.
.:.
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<Thursday, January 21st, 2010> [Vincent]
January 20th, 2010
Two things happened yesterday to make me feel a little older.
Tori turned nine. Nine. That's almost ten. Which is almost teenager. She's her own bird, to put it mildly, but looking back, she has come so far, and we are so very proud of her. Not that I'm not terrified about the oncoming adolescence.
The other event is kind of embarrassing for Nev, so I apologize if you ever read this, sweetie. Nev had a potty accident on the playground today. The nurse said it's been happening with lots of kids because of the cold. Strange. Anyway, the funny incident happened when she was sitting in the nurse's office, waiting for me to deliver some clean clothes from home. Out of boredom and curiosity, and with no idea what it did, she pressed the little button under the handset while the nurse was on the phone. You know, the button that gets pressed when you set the handset down. The one that hangs up the phone.
The nurse snapped at her, since she was talking to a parent, and this disconnected the call. Nev was mortified. I found her in tears when I got there. All of this happened because the phones that we grew up with, are... antiques. She's probably never seen a phone like that, and certainly never used one. At least now she knows what that button does.
Time for a mid-life crisis, I guess. Maybe I'll move the family to New York or something.
.:.
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<Friday, January 15th, 2010> [Vincent]
The Great Random Album Cover Generator
I'm sure this has already been done, and probably better, but it seemed like a worthwhile exercise.
.:.
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<Sunday, January 10th, 2010> [Amy]
We're movin' on up
"I have processed your paperwork and the application has been approved!"
With those words, we are now the proud tenants of apartment 35A in Gateway Plaza, a 35-story, 1,700-unit apartment complex in Battery Park City, in lower Manhattan. When asked for her input, Tori had requested an apartment in an elevator building, on a high floor with a view. Her daddy delivered! Our new home is on the top (35th) floor, with eastern views toward the financial district and southern views of the New York harbor. The elevator only has a "down" button.
V looked at many apartments this past week, including a first floor two bedroom in a landmark pre-war walkup in Greenwich Village and a top floor two bedroom loft in a converted candy factory in Brooklyn. But the same things that drew us to Battery Park City when we lived in NYC before lured us back--proximity to V's work, good schools, adequate square footage, modern amenities, safety, green space.
Gateway is more centrally located in BPC than our old building. Because of this, and because it's an older building with larger floorplans and lower rents, the complex is FULL of families with children. It's pet-friendly, with a fenced dog run at the base of our building. Gateway also has an indoor pool, which I'm sure will be a hit with the girls.
Our new apartment, while larger than our old one, is still a one bedroom. However, because the living room is 26+ feet long and has two exposures (windows on different walls), we have the option of putting up a pressurized wall (not nailed to the floor or ceiling, but held in place with jacks). We hate to block the view, though, so we're going to try creating a space for the girls with just a room divider bookcase initially.
V's commute to work, straight east on Liberty Street, will take less than ten minutes on foot. We've joked about trying to signal each other with hand mirrors (his office on the 44th floor is visible from our windows). The girls will attend PS 89 in Battery Park City, half a mile away. Best of all, my mom is now considering moving to NYC (into our building, in fact) to be close to us when her lease here is up next January. YAAYYYY!!!
V will sign the lease and take possession of the apartment tomorrow. He'll order a sofa bed at the Brooklyn IKEA this week, and arrange to have the doorman accept delivery of it while he's gone. He flies back to Florida on Thursday. When he returns to New York in February, he'll stay at the new apartment. And when the girls and I join him for Valentine's weekend, we'll stay there, as well. We're planning a PENThousewarming party for Saturday, February 13th. So if you're reading this, and you're going to be in NYC that weekend, come get vertigo at our place! We'll supply the dramamine...
.:.
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<Sunday, January 10th, 2010> [Amy]
Paxil means "peace"
Paxil is awesome. Tori's been on the lowest dose of this SSRI used to treat anxiety for a month now. She has completely stopped handflapping. She's affectionate and related. She asked me this morning, "Mom, will you turn off the TV so that Nev will play with me?" When I declined, she decided to put on a puppet show for me with her imaginary brother (made out of the magnet toy she got for Christmas from Grandpa Bill) instead. She insisted that I pay attention and cheer afterwards.
I asked her this morning, when I gave her her pill, if she thought the medicine was helping. "I don't know. I guess so," she said. I observed, "You don't handflap anymore when I brush your hair." "Of course not", she replied. "You used to handflap when you were anxious," I explained, "You'd handflap so hard everytime I got near you with a brush that it was hard to brush your hair." "No, mom," she insisted, "I handflap when I'm EXCITED." "Well, either way, I haven't seen you do it lately," I told her. "Oh, okay," she replied.
When mom came over tonight, she related a similar exchange from earlier today. "Tori, you're not verbal stimming," she observed. "Of course I'm not sitting," Tori retorted, "I'm STANDING." "No, verbal STIMMING," my mom corrected. "Remember how you used to repeat stuff over and over?" "Huh?" came Tori's reply. "What are you TALKING about?"
I haven't heard her say "I was just being stupid" or "it's because I have autism" in weeks. She's still really weird, but she seems happy and confident. She seeks out the praise she used to shun. And she kisses me and tells me she loves me multiple times a day. Most importantly, she doesn't seem at all nervous. She's relaxed and at peace.
.:.
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<Friday, January 1st, 2010> [Amy]
A perfect '10
We have big plans for the new year to share. Although we all love Florida, Vincent's current gig is too good to give up, and we're anxious to be together full-time as a family again. So we're moving back to New York City!
What's changed in the last four years? We can afford a two bedroom apartment there now. The public elementary schools thin out in upper grades, so class size should be more manageable. And the girls can get around under their own power and carry their own stuff now--no more folding strollers!
Vincent's employer has already approved the move and found him desk space in the New York office. He will rent an apartment there soon, so that we can get the IEP (Individualized Education Plan--Tori's accommodations and services) process started with the school. The girls and I will join him when their school year ends and our lease here is up, at the end of June.
We haven't settled on a neighborhood yet, but are concentrating our search on Manhattan and Brooklyn. We're looking for a good public school with CTT (Collaborative Team Teaching, a form of special ed inclusion) classes and preferably an arts focus. There are several contenders so far.
Vincent will fly to NYC for two weeks on Tuesday. While he's there he'll check out neighborhoods--Carroll Gardens, Cobble Hill, Boerum Hill. In early February, he'll tour schools--PS 58, PS 261. In mid February, the girls and I will fly up to NYC to meet him for a long weekend. We'll sign a lease on an apartment then, if we haven't already.
I'm excited! I LOVE New York--riding the subway, walking everywhere, hearing several languages a day. I'll miss Florida's perfect weather, but I'm looking forward to hanging out with our NYC friends and their kids. Twenty-ten is going to be a great year!
.:.
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<Tuesday, December 29th, 2009> [Amy]
The agony and the ecstacy
There's a saying that having children is like letting your heart go walking around outside your body. I can vouch for the truth in it. On our recent cruise, we enrolled the girls in Carnival's children's program, Camp Carnival. The 6-8 year olds from Camp Carnival were invited to perform, along with the professional cast, in the ship's holiday extravaganza on Christmas Day. Nev has a great singing voice, so we looked forward to the show.
Imagine our surprise and confusion, then, as we watched her become increasingly distressed throughout the performance. By the time I met her onstage after the show, she'd melted into a puddle of tears. I carried her back to our cabin, where she told me, through sobs, that she was upset because none of the cast would wave back to her or even smile at her.
Stifling a laugh, I explained to her that they were working hard, trying to remember lines and steps and not fall over with the rocking of the ship. She was not persuaded. I left her sniffling on Vincent's lap and went to have a much-needed pre-dinner drink with my mom.
As I returned to our cabin to escort the girls to the kids' dinner, I saw them already en route, and rushed to catch up. As I passed through the atrium, a woman called out to me. "Excuse me. Are you her mother?" I turned to find the diva from the ship's production cast. She'd changed out of her costume but still wore her stage makeup. "Your daughter has the most beautiful voice. I've heard her in rehearsals."
I thanked her, and told her about Nev's earlier meltdown. "Can you wait here just a second while I get her?" I asked. I called Nev back and asked her if she knew who this woman was. "The singer from the show?" she ventured, wide-eyed now. "You have a beautiful voice, baby," the diva told her, "You're going to be up on-stage someday." Nev FLOATED the rest of the way to dinner. That, for me, was the best Christmas gift ever.
.:.
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<Thursday, December 10th, 2009> [Vincent]
Get the fever
So Amy took Tori to a shrink today. We've only seen one other shrink before, and he really didn't get kids like Tori. This guy gets it. She compared him to our beloved psychologist here in Norman.
Amy told him "I'm ashamed to say it, but she seems most normal..." and he finished her sentence -- "...when she's sick". Holy crap.
So, we're not the only people to have noticed this effect in our autistic kids. I started looking around, and it turns out lots of people have noticed this effect.
It is a very promising discovery, and there is hope that they will be able to figure out what's going on and create treatments to help autistic people get along in our boring world a little more easily (if they want).
.:.
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<Wednesday, November 25th, 2009> [Vincent]
Florida
We often say that if we'd known parenting would have required an advanced degree in child psychology, we might have rethought the whole deal. In jest, of course. Honest. Really.
One kid is a behavior problem because she's bored. She's so competitive that one day she came home in tears after missing two extra credit problems. The teacher had to start grading the extra credit separately so it wasn't 108 out of 110, but instead 100 and +8. Every class she starts in, she reacts to the newness with defiance, which is strange, but that's just her style. Once the teachers figure out that her mood swings are wide in both directions, they learn to forgive the brash behavior because of the sweet behavior that will follow momentarily.
The other kid is struggling with school, something neither of us faced. We're having a lot of trouble keeping her on task, reading, doing her homework. It's really tough to tell why. It could be inability, lack of will, lack of interest, defiance, or some combination. We're at a loss what to do and will be trying random things in lieu of actual professional advice, since nobody we've found knows what to do. She is unique. One might even say very unique if that wasn't redundant.
Florida is nice. The weather couldn't be much better, short of Maui. The people are interesting because they're from all over, just like us. The schools aren't bad, simply because the mansions on the beach pay their property taxes. The restaurants aren't bad, we're just lacking an Indian place. The rent is cheap because of the depressed economy.
But it's not perfect. Though the state went for Obama, we've learned to keep our mouths shut about politics this far North. I will tire of the travel schedule even more than I have already. There are jobs here, but most of them are about thirty minutes away, a commute I'd like to avoid. The school doesn't quite know what to do with the autie. We're making calls above the school's head right now looking for advice, and looking elsewhere simultaneously.
Which leads us to the idea of moving again, which I'm sure we will at some point, being a nomadic people. The girls had a really good time in New York, and are both excited about the idea of living there again. I don't know if that makes sense for a number of reasons, the same reasons that compelled us to leave in the first place. I miss the friends we made in our short time there, and not driving, and great food, and... I do not miss the stress of an island chocked full of people constantly hustling for a better apartment, place on the subway, school placement, whatever.
On a positive note, the chemo is over, though the treatments continue. Hopefully as life returns to something resembling normal, decisions will come more easily to this group of nomads, currently living on a barrier island along the coast of Florida.
.:.
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More rambling...
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