a few more photos

Here are Stella and Bobby having a good time at the Barnes & Noble Down Syndrome Awareness event...

Finally, the photos!

Down Syndrome Awareness Event at Barnes & Noble Lincoln Triangle, Presidents' Day 2007

ABOVE: Bob, Stella, Bob (Dad)

LEFT: Stella and Dad with Pete Townshend

OK, so Pete has a blog too...

and he's also working on a memoir. Gosh! I think he even chose the Minima template like me. (There the similarities end. Sigh. He's the one with the book contract in hand.) Here's the posting he did about the Barnes & Noble event:

http://petetownshend-whohe.blogspot.com/2007/02/going-up-with-downs.html

I only wish my Who-obsessed college boyfriend could read this (D.B.W., are you out there?)

Hey New Yorkers: Don't Miss This! Monday, Feb. 19, 11 a.m.

Thanks to my fellow Trisomy 21 mom bloggers I found out about Barnes and Noble's national series of events to raise awareness of Down syndrome. (Of course, now that the month is almost over...)

Anyway, we are taking Stella and the fam to this event tomorrow at the Lincoln Triangle B&N at 11 a.m. Bob McGrath from Sesame Street (Stella's favorite!) is the MC, and the program features Melissa Riggio, the 18-year-old daughter of Barnes & Noble.com founder Steve Riggio, and the author of an article called "I Have Down Syndrome" published in National Geographic Kids.

For more information, click this link.

I am embarrassed to say that this will be our first ever event connected the National Down Syndrome Society. Honestly, we feel very isolated here in NYC. I guess most urbanites are just too sophisticated to have kids with DS. If you know what I mean.

I am gonna bring extra Kleenex, 'cause I know I'm gonna bawl at some point!

UPDATE, After the Event:
I did not cry, but mostly because we were so busy chasing Stella and Bobby around in the crowd. Not only did we see Melissa Riggio and her singer-songwriter friend Rachel, and Bob from Sesame Street, but Chris Burke (Life Goes On) was there, and Stella and Daddy got their pictures taken with PETE TOWNSHEND!! I told Bob that Pete was there, and he said, "Who?" and I said, "Yes! The Who!" ha ha ha ha
I'll post photos as soon as Bob emails them to me!

FIT Students Rock!

Please forgive me for a little trumpeting here, but I am so jazzed about the students I'm in touch with this semester--in my classes (Creative writing, in class and online, and Creative Imagination) and in the new, improved FIT Words club (formerly the Poetry Club). It's so energizing to be working with creative, lively, unpredictable, talented, etc. etc. young people.

This is what makes it all worth while. Look for vignettes from FIT life in the future...

Be it resolved (x10)

I will not check my email I will not check my email I will not check my email I will not check my email I will not check my email I will not check my email I will not check my email I will not check my email I will not check my email I will not check my email

I will not google I will not google I will not google I will not google I will not google I will not google I will not google I will not google I will not google I will not google

Anyone know what I'm talking about?

Ridin' the MTA

Photo: Eggnog Publications. It was bound to happen. Those groovy newfangled subway cars (which I have so enjoyed on the IRT and 6 Train) have made it to the N line. Instead of a live conductor announcing the stops (at varying levels of intelligibility) there is a pleasant electronically reproduced voice and a digital sign in each car letting you know where you are, what's coming next, and what time it is.

The other night I was coming home from work (quite late, mind you) and the automated system was botched up so that it was about four stops behind. An unfortunate gentleman to my left was trying to get the 42nd Street/Times Square and made the mistake of paying attention to the announcements rather than looking out the window. Sure enough, he was still on the train in the tunnel under the East River--the voice was saying The NEXT stop is...Forty-Ninth Street when in reality we were leaving Manhattan and approaching Queensborough Plaza, the first stop in Queens.

Somebody kindly clued him in, and the poor guy had to get off, walk up to the Manhattan bound platform, and wait OUTSIDE in freezing temperatures for a train back into the city.

I was mainly annoyed that he hadn't gotten off when he wanted to, because he was squished against me the whole way...

Child Left Behind, part 2

January 26, 2007

VIA CERTIFIED MAIL

Ms. E___ M_____
CSE Chairperson
L____________, NY

Dear Ms. M_______:

Our daughter, Stella ________, DOB _______, is currently enrolled in a special education classroom at P.S. Q112.

Stella has a diagnosis of Down syndrome and experiences severe delays in expressive communication as well as physical challenges. We feel very strongly that her current placement does not appropriately serve Stella’s needs.

Therefore, we would like to request that Stella be re-evaluated and an alternative placement be pursued as soon as possible.

Thank you for your assistance.

Best regards,


A______ L_______ R______ B______
Mother Father

That morning, Bob agreed to drop me off on the way into Manhattan. We were both anxious and stressed, and we ended up snapping at each other (the next I see him in the afternoon he will drop a small shopping bag emblazoned with the logo “Chocolate Bar” on the bed where I sit with my laptop—a peace offering). Traffic signals seemed magically to turn red just as we approached each intersection, double-parked cars appeared on every block specifically to delay us. We were running late.

At ten-fifteen, my cell phone played the Clash’s “London Calling.” It was Debbie, who has a high-pitched voice that can sound a bit hysterical—I assured her I was just a few minutes away.

Bob stops at the red light and I leap out of the van rather than wait for him to turn the corner. I jog up the steps to the Dresden-blue metal doors. Debbie is waiting at the security desk and convinces the officer to give me a hall pass (after I show ID and sign in) so that I don’t need to wait in the school office. I avoid meeting Debbie’s eyes. The anxiety is palpable as we walk up the stairs and through the gym to the therapists’ offices in the back.

The room is not large, but there is space enough. After brief greetings, we sit in small chairs, in a circle. I have removed my coat, hat, scarf, and taken out a notebook and pen. A tension pervades the room, and to break it, I ask about the daily routine, taking careful notes. It has occurred to me that I have a very unclear idea of what my daughter does every day, and somehow it seems important that I remedy that.

Pat answers me carefully, and little by little I am able to understand Stella’s experience in the classroom: first, breakfast, then looking at books in the classroom. I’m told that Stella particularly likes to “read” to the stuffed giraffe. Then, most mornings, they head to the gym for adaptive phys ed. After that comes reading circle—Stella has a hard time sitting in the circle, and sometimes lies down immediately. Next is lunch, at eleven, and afterwards is quite time on the four days that they don’t work on computers. Stella often falls asleep, they tell me, and they just let her sleep. Between quiet time and dismissal the class either goes to the library, does math, or has a science lesson.

I remark on the rigorous structure, the lack of free play. “It’s the curriculum,” says Pat. “Kindergarten isn’t kindergarten anymore.”

Mindy confirms this. “Their curriculum is the same as it is for the General Education kindergarten.”

I look around the circle. “You mean you aren’t allowed to let them have free play?”

Everyone looks wistful. Pat says, “Before I came here, the teacher from last year told me the principal made her throw away all the toys. I had to go out and buy toys at the beginning of the year. I sneak in play whenever I can." She waves her hand. "Everything we learned in school—all the Piaget and everything—it’s out the window.”

“This is ridiculous for a child like Stella,” I say. "She needs to play to learn." No one disagrees. I no longer feel a sense of being the “outsider,” the enemy. We are all in this together.

Pat checks her watch—her prep time is over and she dashes off for the classroom. The others stay.

“So,” Debbie says. “Do you get the sense that this class isn’t appropriate for Stella?”

“Definitely,” I say. “What do I do now? Do I call a lawyer?”

“No,” Mindy and Debbie speak simultaneously. “You can request a re-evaluation,” Mindy continues, “And request to look for another placement.”

“Can she go to another class in the middle of the school year?”

“Definitely,” says the phys ed teacher. “Sometimes there’s a better chance of finding a space in the middle of the year.”

The therapists tell me that I need to talk to Joan, the special ed coordinator assigned to P.S. Q112, and she can advise me on the next step. A few minutes later, Joan appears at the door, followed by Pat, who had gone to fetch her.

With her blue eyes, fair skin, and “boroughs” accent, Joan reminds me and Bob of one of his Irish aunts. Her presence is calming, her voice gentle. She carefully explains my options: (1) request that Stella be allowed to repeat kindergarten; (2) request another placement in her current system; (3) request a placement in District 75, the self-contained special education schools and classrooms spread across the five boroughs, generally for students whose disabilities (often multiple) preclude them from integration into a “regular” school.

------

The question arises again and again: Am I doing enough for my child? I wallow in a Google search (my favorite form of procrastination)—private schools, fish oil supplements, a video series that teaches American Sign Language to infants and young children. A new school was started by three mothers whose children have Down syndrome, based on an inclusion model. Although the school’s website is mum on the subject, a New York magazine article lists the tuition as $25,600. After trying for an hour, I finally locate the list of state-approved “non-public schools”, i.e., places where parents who do not find an appropriate public school class for their child can send them on the Board of Ed’s nickel. I really will know little, if anything, about these places until I actually visit them. I track the certified letter to the Board of Ed on the Postal Service website and steel myself for the process ahead.

Notes from the Academy, Ch. XXVIII

We interrupt this broadcast for a brief dispatch from the trenches. The saga of PS Q112 will resume shortly.

Rebecca Loudon has a recurring series on her wonderful blog called "my glamorous job." This is inspired by that.

As Assistant Chair of my department, it is my job to help things run smoothly. Oftentimes, this involves being the chosen ventilation vehicle for the frustrations of students, instructors, staff, and administrators. My coworkers may see me as everything from a facilitator to a secretarial worker to an advocate to an adversary, representing policies I did not institute and with which I may not even agree. In exchange, I get to teach three classes a semester instead of four. (We are a "teaching institution." That is why adjuncts, who teach most of our classes, have to take on so many classes, and full-timers have to attend so many meetings and serve on so many committees that we all have to grade papers and do our course prep on the subway.)

The other day a colleague got right in my face and accused me of having "forgotten what it's like to be an adjunct." Well, folks, even my addled memory is not that bad.

Yes, it has been a few years since I was in the Will Teach for Food line, but my dear husband is smack in the middle of it. Yesterday he was telling me that he gets paid the same (measly) amount to corral 30-40 eager jazz students into combos that some other guy in his department gets to come in once a week and oversee one placid little quartet. When he brought it up to the department chair, he was advised not to let all the kids into the class.

"So," I said. "That's what you'll do, right?"

He looked defeated, sighed. "I can't turn away students who want to learn."

I am a tenured professor. Life is perfect, right? What more could I possibly want? Maybe to live without fear of the rent check bouncing or those nasty collection calls. Not buying groceries with a credit card half the month. A home for this four-person family that is larger than a broom closet. Neither my husband nor I has a gambling addiction, we do not go on shopping sprees or cruises. My kids go to public school, we vacation (when we have the time) at our parents' houses, we get our clothes at Target and Old Navy.

I'm not complaining at all. This is my dream job, and I say that entirely without irony. This is the job I prepared for. Unlike my numerous stints in the corporate world, my education and talents matter here, and are more or less appreciated. For the first time in my life I have job security, which is huge in today's economy. My family has health insurance. I get a holiday break, a spring break, and a few weeks off in the summer. And this really is a great life, living in New York, the greatest city in the world. But I'm tired of people thinking I am so privileged, living the high life in an ivory tower. As a coworker once told me years ago, "My mother always says, if we all put our shoes in a pile, we'd want to leave with our own pair."

OK, that's it for now. I have to go into the office now (note: It's SUNDAY. Poor me!).