Monday, December 31, 2007

holidaze




We've been traveling for the holidays--first to State College for a brief stop, then to Ohio for Christmas. Right now I'm in Evansville, Indiana, visiting my cousin Lu. If you're ever out this way, I recommend Penny Lane Coffee Shop--I am diving into a bowl of soy latte right now!

Friday, December 14, 2007

children held hostage?


That's the approach of a controversial new ad campaign intended to raise awareness about children's psychiatric disorders. To read more about it go to this article in the NY Times.

Vicki Forman, author of the Special Needs Mama column at Literary Mama and a good writer-mom pal, eloquently responded: “The idea of an autistic person being held hostage is a very disturbing and backward image... Rather than promote public awareness, this reinforces stereotypes — that there is something damaged about the autistic person, something in need of a repair.”

Also quoted is Kristina Chew, author of the blog Autism Vox.

To read the response of Susan Senator, the parent of an 18-year-old with autism, go to her blog.

BBDO, the agency who created the pro-bono ads for the NYU Child Study Center, stands by their campaign as necessarily provocative. The Child Study Center posted the ads, styled as "ransom notes," on their website. Earlier today I was able to view all the ads, but for some reason the images do not open up now. (Perhaps they have been removed from the center's website?)

What do you think?

Monday, December 10, 2007

we love MoMA!




Yesterday we finally took advantage of two great programs for families at NYC's Museum of Modern Art. Bob took Bobby to "A Closer Look for Kids" at the main site, while I took Stella to the "Create-Ability" program for children with special needs, starting at the Education Center.

Bobby got to have a special tour of the Martin Puryear exhibit and do some drawings of the pieces in the exhibit. Meanwhile, Stella and I went with MoMA's Sally, Amanda, and Alex (and another lucky family) to spend time with some famous paintings: Rousseau's The Sleeping Gypsy, Chagall's I and the Village, and Wyeth's Christina's World.

Bobby's program finished around the time we were at the Chagall, so Bob took over with Stella and I took Bobby for a snack in the cafe. Then we rejoined the Create-Ability team for some art-making time in the classroom!

Friday, December 07, 2007

happy birthday, Mom!


Yes, we have two Sagittariuses (Sagittarii?) in the family. My beautiful young mother celebrated her birthday yesterday. Here she is with the gift she got from her sister Jan, my godmother. (That's my beautiful baby sister Katy to her right.)

When I was little, Mom's birthday always signalled the time when the holiday season began in earnest. I recall one night walking over to my grandparents' house (my father's parents lived next door to us) for a special birthday dessert for Mom. The first snow crunched under my shoes and sparkled like diamonds under the lamppost. I think we had custard pie.

Wednesday, December 05, 2007

signing time for Stella?

I've heard such great things about the Signing Time DVD series that I'm thinking about getting some of them for Stella. We have never pursued signing with her, but I'm thinking it might be helpful. She certainly was enthralled by Rachel at the Buddy Walk!

So, readers, please give me your sense of whether it's a good idea to get her started now. She's six, she approximates a lot of language and speaks in sentences, but sometimes it's hard to understand her (and it's hard for her to communicate). Is it too late? Is it worth a try? If so, which disc should we start with? Any suggestions welcome!

Tuesday, December 04, 2007

in a dark time

When Bob and I first met fourteen years ago, he was reading Roethke (one of the things that really impressed me about him), and found this poem particularly moving. It is sadly appropriate now. Bob has decided he needs to live apart, at least for the short term. He is moving into an apartment nearby and will be with the kids nearly as much as before, but I am having a very hard time with it all.

In a Dark Time

In a dark time, the eye begins to see,
I meet my shadow in the deepening shade;
I hear my echo in the echoing wood--
A lord of nature weeping to a tree,
I live between the heron and the wren,
Beasts of the hill and serpents of the den.

What's madness but nobility of soul
At odds with circumstance? The day's on fire!
I know the purity of pure despair,
My shadow pinned against a sweating wall,
That place among the rocks--is it a cave,
Or winding path? The edge is what I have.

A steady storm of correspondences!
A night flowing with birds, a ragged moon,
And in broad day the midnight come again!
A man goes far to find out what he is--
Death of the self in a long, tearless night,
All natural shapes blazing unnatural light.

Dark,dark my light, and darker my desire.
My soul, like some heat-maddened summer fly,
Keeps buzzing at the sill. Which I is I?
A fallen man, I climb out of my fear.
The mind enters itself, and God the mind,
And one is One, free in the tearing wind.


--Theodore Roethke

Friday, November 30, 2007

happy birthday, baby boy!


Today was Bobby's birthday, and he and I celebrated with an after-school treat and some presents. He ordered a five-layer chocolate cake and, when I asked him if I could have a bite he said, "If you weren't here, this would never happen. I think you should get a piece of my life."

Sometimes, it's just all worth it...

I'll post photos tomorrow.

Wednesday, November 21, 2007

over the river(s) and...


on our way to State College, PA! Bobby and I are spending the holiday with my brother David and his family. That's David and his wife Jennifer in the photo.

The first two rivers--East and Hudson--may be the toughest, but I'm hoping for good traffic karma! Then it's on to the Delaware Water Gap and those unspellable, but beautiful, Pennsylvania waterways!

Wishing everyone peace and safe travels!

Saturday, November 17, 2007

Poetry Reading in Brooklyn Sunday Nov 18!

I'm reading again--but different poems this time, I swear--at the Biscuit BBQ tomorrow at 6 p.m.

Fellow readers include Amy Holman, whom I had the pleasure of reading with in 2003, and Lorna Knowles Blake, with whom I attended two conferences this summer.

Great poetry, great food. Hope to see you there!

the "M" word: a query

When I got the call from the midwife telling me that my AFP test results indicated an elevated risk that my baby (Stella) had Down syndrome and recommending amniocentesis, I told her we were declining genetic testing because "we would not terminate anyway." She sputtered and twittered and finally blurted out, "Did you know that a high percentage of marriages end in divorce when there's a child with a disability?!"

I know that statistically this is true--there is a higher rate of divorce among special needs families--even higher than the already high rate for all couples.

And folks, let me tell you, there has been trouble in this particular little "paradise." The tiny two-bedroom in Queens crackles with tension. How much of this, I wonder, has to do with our parenting of Stella? How much is just the two of us, the individuals we are? How much is the tininess of the tiny apartment?

I'm very curious about the experiences of other couples who are parenting a child with special needs. So I'd like to pose the question to those of you reading now who are in that situation: how do you think it has affected your marriage, if at all? If you were married but no longer are, were your child's special needs a factor in that decision?

I would like to hear as many voices as possible, and you may post anonymously. (In fact, that would probably be preferable.)

Friday, November 09, 2007

Center for Book Arts reading tonite

Yes, I'm back in NYC now. Since my return (the day before Halloween), things have been bumpier and scarier than the plane ride from Oakland to LAX, so I've been a non-blogger for a bit. Hoping to change that now.

In other news, I'm reading tonight at the Center for Book Arts with David Lehman, introduced by Sharon Dolin. Honored, thrilled, just slightly nervous.

For more, click here.

Friday, October 26, 2007

joseph cornell in san francisco

Yesterday I went with a friend to see this amazing exhibit of the work of Joseph Cornell. http://www.sfmoma.org/exhibitions/exhib_detail.asp?id=264

I found his work, and the info about his life, to be extremely moving and inspiring. One thing I didn't know was that Cornell's brother Robert, who had severe cerebral palsy lived with him towards the end of his (Robert's) life.

If you are going to be anywhere near the Bay Area while the exhibition is on, I highly recommend it!

Tuesday, October 23, 2007

goin' to california

Despite fire and smoke and hot, hot winds, I am heading to the Left Coast--my first time ever in the Golden State. I'll try to post as much as I can, but I'll probably miss a couple of days this next week.

I'll miss my babies tremendously, but they will be getting some extra quality time with their beloved Dad. Whom I will also miss very very much!

In the meantime, please check out some of the blogs in the links lists.

Keep the faith!

Monday, October 22, 2007

31 for 21: Getting It Down so far

The 31 for 21 blogfest has been an amazing experience for me, both as a reader and as a writer. I've been introduced to blogs I hadn't checked out before, and I've gotten new readers, too.

Most of all, it's gotten me writing. If I keep it up until the 31st, I will have posted more entries this month than I did the entire year in 2006.

Thanks again to Tricia for getting us started getting it down!

Sunday, October 21, 2007

remembering Gabe


It's hard to believe it has been a year since my young brother-in-law left this earth. People still find this blog by googling his name. He is missed by many, many people. Katy and the boys are doing really well. I'm so proud of my baby sister, the strong woman she has become.

If you're a new reader and would like to know what I'm talking about, please click here.

Gabe was all about Down syndrome awareness. He was one of Stella's godparents, and his little brothers Levi and Eric were some of the first kids with Down syndrome that our family got to know. His mom called me in the hospital the day Stella was born to offer her support.

Typing through tears. Gotta go now.

poetry, a little

I've been so absorbed in the 31 for 21 posting that I haven't said much about poetry, my other great love. I've been writing some, and revising some, and reading and hearing a lot of really great stuff.

Check out my list of links to poetry goddesses--there have been some updates lately.

And read a poem today!

Saturday, October 20, 2007

tired

I'm tired. I had some deadlines this week, and some family/friend events to attend today (one happy, one sad).

Stella is doing really well. So is Bobby.

I'm going to eat a little more ice cream and read a book about the brain!

Tuesday, October 16, 2007

Happy 100th Post, Saint Nobody!!!


Yes, it's finally happened, and how appropriate that it occurs smack in the middle of Down Syndrome Awareness Month (and could it have happened without Tricia's challenge? Prob. not.).

In honor of the Saint's centenary entry, I would like to officially announce that Saint Nobody, the poetry collection, has been accepted for publication by Red Hen Press! More details, and plenty of grateful admiration for this wonderful press, will most certainly be forthcoming. Don't change that dial!

Thanks to an anonymous tip from a Very Scholarly Blogger, I researched the medieval concept of a "Saint Nobody" and found the illustration you'll see if you scroll all the way the the very bottom of this page. The motto reads, "Nobody is my name that beyreth [beareth] every bodies blame." I'm considering asking the designer to incorporate it into the cover art.

Now it's on to revising the manuscript! Woo hoo! (or, as Tricia would say, "Woot.")

Monday, October 15, 2007

and Now We Are Six


Cake princess
Originally uploaded by saint nobody
Stellabella and her princess cake, from the family party on Saturday. It was at a local bowling alley that also has party rooms. She had a blast--while her brother and cousins were bowling, she was helping Mom set the table and "test" the cake.

Thursday, October 11, 2007

beyond words

The little girl says few words that are clearly distinguishable, but boy, can she communicate. She babble and prattles but now, at age six, she is no longer just "jargoning," in speech therapy parlance. She is not just imitating the patterns of her mother tongue, she is saying words and sentences she understands--she knows what she is talking about. She approximates, and very often we can understand what she is saying. We also become accustomed to her usual approximations, familiar phrases--"Mom, could I please have some water" sounds like "Mom. Quee-eye-buppa water?"

She does have this habit, when she is denied a request, of simply repeating that request, several times if necessary. Repetition, to Stella, seems to be a mode of argument. It is frustrating sometimes, but I find that if I alter my response to avoid the actual word "No," she will capitulate and often let the issue drop. At bedtime, for example:

"Mom, can I have a book?"
"No, Stella. It's time for sleepies."
"Mom, can I have a a book?" (identical inflection)
"No, Stella. I told you. It's late, you've been put to bed, it's time to sleep."
"Mom--" pause until she has my attention again-- "Can I have a book?"
I come in close, kiss, snuggle her neck. "Nighty night."
At this point, she gives in and settles down.

---

Why do I write? I write because Stella cannot, because she may never be able to get down on paper her own experience. I write because I need to tell what it is like, what it is like to be her (I conjecture this), I write to exorcise guilt, I write to ask questions like, "Does she understand why I slapped her hands for going on the roof or slapped her bottom for pooping in her pull-up?" (Is it just about me making sure that she is properly afraid, that she learns to sense danger or at least builds a store in her memory of what things and places are dangerous? In trying to ward off danger, Mommy becomes the danger.)

I write because no one else can get to know this little girl in the way I can, because no one else is her mother. I write because I need to learn what it truly means to be her mother, I write to instruct myself in how to live this life.

Wednesday, October 10, 2007

glimpses of love in fighting the inexorable deterioration of the will...

OK, I'll admit it. Since taking the 31 for 21 challenge I have begun to find myself procrastinating when it comes to blogging, in the same way I usually put off other "have-to" things. Quite often I would just much rather read other people's blogs, or play online solitaire, or eat chocolate.

Part of it is I am also working on the memoir, bit by bit, longhand, in notebooks, at my writing space whenever I can make it. This is deep work, and it is slow going for them most part. And it often siphons off the language I have to give. I recall years ago a good poet friend of mine apologizing for not keeping up our email correspondence by saying, "I feel like I have only so many words per day." I totally know what she meant.

It doesn't help that I have been fighting depression (yes, that is the technical term for the lovely cartoon character Major Funk), and a host of emotions usually gray to purple in hue, and also spending time with the kids through a holiday and Bob being out of town a great deal. I only have so much energy per day. (I am amazed at my fellow T21 mom-bloggers who have even larger families, or other challenges [including their children's serious health issues] and who are still able to post daily.)

And now that the bus situation, the thorny problem we thought was solved so we could move on to the next challenge, is back on our plates, I'm feeling more than a bit daunted. I'm quailing, flailing, and perhaps just failing.

I decided early this morning that I would not post any complaints today. I do not want to be a "downer" (sorry for the word). I want to celebrate our life with Stella in all its complexity. You can see from the pictures how beautiful and engaging she is. What's harder to discern is the exact nature of her gifts, from our perspective.

I promise to get it down, get it all down, in little pieces, a day at a time.

Today's tidbit is one of my favorites: Ever since Stella was a toddler she has been known for her hugs. Her cousin Elly once said, "Stella is the best hugger ever!" The past year or two, she has added a special touch: When she gives you a full-on hug, she also pats you on the back with one hand. It feels amazing. This little person is not only expressing love but actually comforting you, her caregiver or family member or friend. Just a little something extra.

Tuesday, October 09, 2007

rude awakening, or here we go again

This morning we were awakened by a phone call--no, let me be honest, we were already awake, and it was 10:30 (one or both of us may occasionally go back to sleep after the kids get on the bus, esp. if we have been up late working the night before).

Anyway, the call was from the Office of Pupil Transportation, informing us that Stella's bus schedule/route was changing YET AGAIN. After a week and a half of a more human schedule (picked up at 7:45 a.m., dropped off at 4 p.m.), she is going back to a 6:30 a.m. pick up, the 1st of 9 kids. ???????????????

The woman on the phone could not even tell Bob the bus company, let alone the driver.

Needless to say, it felt as if we were back to the drawing board. I called to check on the medical form we submitted last week and had to leave voicemails. We finally got a response: the forms are being reviewed by their "staff pediatrician," and if our pediatrician's recommendation is approved, the information will be put in her file.

In the meantime, we have no idea who will be picking our daughter up and driving her around starting Thursday (or was it Wednesday? I am really mixed up at this point).

Hello Art McFarland? The story continues...

Meanwhile, Stella Bella is here next to me as I type on the bed, showing no signs of going to sleep. She's awfully darn cute, though!

Monday, October 08, 2007

an American Girl


Picking out a Bitty Baby at American Girl Place.
The rest of the birthday photos are on Flickr.

it's my birthday...they threw me a parade!


Christopher Columbus waves from the Santa Maria while Princess Stella looks on. (Fifth Avenue style.)
She was born on a Columbus Day six years ago...appropriately enough, since she is one-quarter Italian! This is the first year that her birthday has fallen on Columbus Day since 2001.

Go Stella, It's your birthday!


Birthday lunch with Mom: grilled cheese at Burger Heaven.

Sunday, October 07, 2007

giving up, giving in, giving, giving, giving

I'm sorry I missed a post. I truly am. I started this really brilliant meditation on language, images, misinterpretation, and the semiotics of Myspace. I even saved it as a draft.

But I just couldn't finish and post it. Bob was away for this weekend playing out-of-town gigs, and had an in-town gig today, and had had recording sessions Wednesday and Thursday, so basically I was on my own with the kids for a few days. It's exhausting. It's often very demoralizing, too, since even though I've been in a much brighter frame of mind and have kept Major Funk from ruling my every move, I have my limits. (Believe me, the Major is one tough commanding officer. And he's no cartoon character.)

Yesterday I was trying to get us all downstairs, with the stroller and accoutrements, so I could work out before the child care closed at the gym. We're on the second floor of our building, so there is usually a bit of a lag before Miss Stella decides she is going to walk down the stairs. In the meantime, I carried the stroller down, set my heavy backpack in it, got the mail out of the box. Just as I was wondering what was taking our little miss so long, Bobby realized that she had gone up instead of down, and he ran up the two more flights to find that she had gone on to the roof.

Yes. You read that correctly. The roof. There is a door to the roof, and we and our neighbors will occasionally go up there to watch fireworks on 4th of July and other such things. There's a great view of the Triboro Bridge and the eastern Manhattan skyline, plus Hell's Gate Bridge and all the surrounding neighborhood.

The roof is fun, but it's not exactly high security. There's a ridge a couple feet high going around the perimeter, but that's certainly not enough to keep an active child from...well, I won't even write it.

So now we realize that Stella is not only interested in the roof, but is capable of opening the heavy door and going out there. This is the second time in about a week she's done it. The other time was when Bob and I were talking to Art McFarland after the Channel 7 interview/filming. (We thought she and Bobby were both in the apartment. Imagine our surprise when we went upstairs and found our son playing his DS, and our daughter nowhere to be seen.)

Yes, there is a "lock" on the door. It's basically a huge hook and eye, and it's really hard to secure (mainly because the door has been painted over so many times that it doesn't close tightly), so it is rarely secured. I even called the landlord last week and told him about this concern. Obviously, nothing was done about it.

So this time, Bobby (Stella's hero) ran up the stairs and grabbed her to keep her from going anywhere before I could get up there. She was sitting in the middle, nowhere near the edges, playing with her Emily Elizabeth doll. She was very upset when I grabbed her, carried her down the stairs, and strapped her into the stroller. "No roof! No roof!" I said, as she wailed.

Later, as we wheeled down the street I said to Bobby, "Remember what I was telling you about adrenaline the other day? That kind of frizzy feeling that's going through your body right now? That's from the adrenaline that was released while we were rescuing Stella. Try to breathe and relax and you'll feel better in a little while."

No, I'm not blaming the landlord, or anyone else. Yes, we are responsible for our child, but it is incredible what she can accomplish in just a few minutes out of our sight. "Constant supervision" does not even begin to describe it. Time with Stella is a joy, a series of discoveries, it's snuggly, it's lively. It's also draining after a certain period of time without a break.

I'm grateful that she has been going to sleep at a normal hour the past few nights. Let's hope her nap today will not keep that from happening again tonight. [wishful thinking]

To be clear: I love these little dudes tremendously. They enrich the world in general, and my world in particular, by their very presence. I love being their mom. But I'm not always sure I'm very good at it. I guess one is never sure of that.

Saturday, October 06, 2007

let's pretend it's still October 5


...and that I have enough energy and brain cells on line to write a post right now. I had the bright idea that I needed to take the kids into the city after school today. We went to the Mid-Manhattan Library, then to Grand Central Station (yup), got some groceries at the marketplace, then back on the subway home.

It probably goes without saying that there are lots of weird and rude people out there (and lots of nice ones, too), and they all come together at rush hour.

But I'll say it anyway. Trying to marshal two active kids, one in a stroller who wants to get out when she needs to stay in, and stay in when we need her to climb stairs, is "a Challenge." Luckily, a very nice woman carried the (empty) stroller up the stairs at Fifth Avenue so I could concentrate on keeping Stella from running down 42nd Street. Other fellow humans were not as helpful, like the crazy man who decided it was his calling to tell me to "calm down, Miss" when I was holding Stella down in her stroller on the platform at Queensborough Plaza. (It took me a minute to realize he was not just a garden-variety busybody, but really did have a screw loose.)

Then there are the lovely folks who make no moves to allow room for a dazed mother with her kiddies (one of whom has a fairly obvious disability) to sit, or even stand comfortably with the stroller, and then give the lucky mum dirty looks when the stroller accidentally bumps against the foot they have so generously extended into the middle of the aisle.

I was going to post a fuzzy photo I took of the kids on the train, but I think one of my fellow new yorkers must have stolen my digital camera while I was distracted by one kid or another. [UPDATE: found the camera, obviously.]

Remind me: why did I think it was a good idea? Oh. It was "An Adventure." And I got some really good baby bok choy.

Thursday, October 04, 2007

music to my ears

"You are released from telephone standby jury duty as of today. You are no longer required to call. Thank you for your service as a juror and for participating in this civic obligation. To repeat this information, press 7."

Halleluah!

Wednesday, October 03, 2007

new world, new words

The necessity of parents becoming advocates for their children. "You will be her advocate," the early intervention coordinator told us when Stella was just weeks old. Life presents you with a capital-C Cause, and you take it up and run with it.

I didn't want to become one of those parents, the ones who make trouble. The large, loudmouthed, anxious, angry woman at the orientation session for Preschool Special Education. She seemed to be looking for a fight. What was she so worried about? I wondered.

All the families at the Buddy Walk, the parents, all of us slightly dazed-looking, perhaps dazzled by the sunny day and the hundreds of smiling faces, all here because of something our children had in common. We were all part of a Community, there for a Cause.

A father, later in the day, exasperated: "Where's my idiot son?" Clearly referring to the one without Down syndrome.

So many words to avoid, to make you cringe. So many times a day you come across them. A whole new language to learn, words that have new meanings now: delays, intervention, diagnosis.

A beautiful little girl waking up in the middle of night for a drink of water then settling back to sleep, porcelain skin, sweet snoring, silky brown hair.

Tuesday, October 02, 2007

Day Two and reflections on NYC Buddy Walk 2007





This is only Day Two of Tricia's "Get It Down: 31 for 21" challenge, so I can hardly quit now, although I am exhausted! I am so glad I took up the gauntlet, because even this early on I feel revved up by being in touch with this expanded community. Thank you, Tricia!

I also have to thank the amazing Karen for giving a shout out on Strollerderby (hence the lovely badge Saint Nobody is wearing).

Since I have exactly 4 minutes left until midnight EST, I will make this as quick as I can. Our first Buddy Walk was a smashing success, even though we didn't manage to meet up with everyone we'd planned (some friends had their plans fall through). The weather was gorgeous, and I had reserved enough energy by sticking close to home the day before that I was able to manage getting Stella to Times Square by myself, and then our dear friend Jeannie provided invaluable assistance the rest of the adventure.

Stella began making friends during the Times Square video--a little guy named Brian who was there with his extended family, including a trio of puppies. Then, on the walk itself in Central Park, we were joined by my Uncle Phil and Aunt Cheryl and their royal golden retriever, Murphy. Stella and Kyle (pictured in yesterday's post) became fast friends and our families joined forces until the Warrior Princess decided she needed to ride instead of walk, and holding hands became too difficult.

I was so focused on making sure Stella was having a good time (which wasn't really that difficult) that I didn't get all weepy and emotional as I had feared. In fact, I only started to cry at the very end of the event, when Chris Burke and his band performed "Ob-La-Di, Ob-La-Da." It just struck me somehow. Obviously, it was the theme song for Chris's show Life Goes On, but like every Beatles' song, it has so many other resonances, private and public.

Chris was really great with all the families afterwards--that's him posing with Stella, which took awhile since I kept accidentally pressing the power button instead of the one that actually takes photos.

Sigh. I'm really reporting here, not reflecting. I will write more later when I'm in a more reflective place. Stay tuned!

P.S. Prince Vince's mama is giving away a pair of wellies!

Monday, October 01, 2007

bus info for parents with children in the NYC special education system

NYC Public Schools Special Education Buses Busing Bus problems routes delays CSE New York City Office of Pupil Transportation OPT DOE Department of Education
We take a break from our regularly scheduled blog postings to assist other parents who may be in the same situation we just went through.

If your child is in the NYC public schools special education system and their bus schedule is not fitting his or her needs, here's what you have to do. You need to get a form entitled "Request for Medical Accommodations to be Completed by Student's Physician." You also need to complete a HIPAA form (authorization for release of health information). After the doctor completes the form, send them both to the Transporation Liaison for your the borough in which your child attends school.

The request form is not available online.

As we have learned, it is notenough to have the doctor write a letter and give it to the child's school.

If you are in Queens, contact the Transportation Liaison for CSE 4 and 5, Sharon Maynard at 718-391-8420 to receive the forms. Send completed forms to the Queens Integrated Service Center, 28-11 Queens Plaza North, Long Island City, NY 11101.

In other boroughs, contact the Parent Coordinator of your child's school for more information.

Good luck everyone!

NYC Buddy Walk 2007


Well, we did it! Stella and I went to our very first NDSS Buddy Walk ever, with the help of our friend Jeannie, my Uncle Phil and Aunt Cheryl, and Murphy the celebrity dog! This photo to me exemplifies the spirit of the Buddy Walk: Stella made a new friend, little Kyle, and they stuck together for at least half of the walk. Note that Murphy is also part of the team (with Uncle Phil's help).

To view the entire set of photos, click here. To view it as a slide show, click here.

finally.... Photos!


After years of lameness, I finally figured out how to download photos from our digital camera to my computer. As I prepare for the big Get It Down post #1 (about the Buddy Walk), I'll leave you with this one, entitled "Stella Sphinx."

Sunday, September 30, 2007

stella article in the ny post 9/29

Yoav's article made it in on Saturday! Click here.

Full disclosure: the "war files" mentioned in the article was my husband's idea!

Buddy Walk today--amazing! more tomorrow...

Saturday, September 29, 2007

gearing up to Get It Down

See that lovely button on the right-hand side of this page? It's the creation of Tricia at Unringing the Bell, who came up with a wonderful idea for bloggers who love someone with Down syndrome.

During October, which is Down Syndrome Awareness Month, Tricia is challenging us to write a post every day that says something thoughtful about our experience of Down syndrome. I'm taking the challenge!

Click the button for more information, and stay tuned for the postings starting Monday!

Friday, September 28, 2007

stella in the news: tune in Channel 7 @ 6 p.m.

Art McFarland from WABC Channel 7 was here yesterday and got lots of footage of the whole family. He told us the story will be running this evening on the 6 p.m. news. If you're in the area, tune in!

Also, the NY Post sent over a wonderful photographer, Brigitte, who took photos for the article Yoav Gonen has been working on. Not sure if it will run today, but I will post again if it does.

Now I have to go pick up our team t-shirts for the NYC Buddy Walk!!!

Wednesday, September 26, 2007

supermom needs a bourbon and soda

Well, the media blitz continues. Today I was fielding calls, not only from Art McFarland's associate at Channel 7, but also from a NY Post reporter. Art and his crew will be following Stella's bus home from school. The Post is sending a photographer to our house to take pictures when the bus gets here.

Ironically, today they changed the order of her pickup and dropoff, so she was on the bus for a shorter time. But someone's kid is still getting home at 5:30. Justice will be served, if the Fourth Estate has anything to say about it! (speaking of justice, I am on call for jury duty starting next week--augh!)

In other news, I got Bobby's Iowa Test of Basic Skills scores from 2nd grade. Allow me to brag: Core score 99th percentile!

If I can only get him to do his September book project: I gave up on the library (closes at 6) and ended up checking out a nice youth mystery novel from the NY Public Library's ebook collection.

Now. Should I set up the new printer and print out donation forms for the Buddy Walk, or have a drink and watch another episode of Slings & Arrows?

Tuesday, September 25, 2007

what the future holds...?


Last night I read a blog posting by Michael Berube, eminent culturual studies scholar and parent of a teen with Down syndrome (author of Life as We Know It: A Father, a Family, and an Exceptional Child). Berube writes a lot about his son Jamie on various blogs and in magazines. The entry basically addresses some of my worst fears and confirms some of them.
Here's an excerpt:
And I hope I haven’t given people the sense that everything is just wonderful with Jamie all the time, and that Down Syndrome isn’t such a big deal if you just take the Right Attitude. (There’s a little story in the DS community about how having a child with DS is like winding up in Holland when you’d planned to go to Italy, and while this story serves the crucial function of reassuring new parents that their lives are not ruined or blasted or just plain over, it’s really not a very good analogy, in the end.) There’s a reason why so many Jamie Stories involve me taking him on trips or playing golf with him or going to aquariums and zoos with him: it’s not like he has friends. Oh, people are mostly very nice to him, and kids greet him cheerily in school and in town, and his teachers and aides like working with him, because he’s a great kid. But he doesn’t have the kind of social network other fifteen-year-olds do; he doesn’t do sleepovers and play dates and just hanging out.

OK, so it's not just us. I'm planning Stella's sixth birthday party and facing once again the fact that the only children there will be her cousins. Even at her school, she does not really have "peers." And her delays in expressive language make it difficult for her to make friends. Sure, most people are friendly, and I am frequently treated to stories of this or that person's encounter with someone with DS in their past--usually of the "they're so sweet" "They never know a stranger" variety. They mean well, and at least it's better than frightened stares, or taunts, or Flava Flav style insults. But it doesn't exactly put a mama's mind at ease.

Berube goes on to discuss health care and other issues of Jamie's future. One thing that is terrifying is the high incidence of Altzheimer's in people with Down syndrome. He points out this article in the Globe and Mail (keep trying and you can read it without having to subscribe)--one of the biggest downers (pun unintended) I've read in a very long time. Giving a painfully detailed account of a 55-year-old woman with DS who has AD, it's actually entitled "Doomed from Birth to Death"! Geez, folks, give us something to work with here.

It is freeing in a way to read Berube's bracing and detailed prose, which painstakingly delineates the issues facing parents of a person with DS. This beautiful little girl--our Warrior Princess with her determination, her personality, her sweet little face and kisses, her grumpy tantrums, her joys and frustrations--has a future that is arguably more uncertain than a "typical" child. I'm so tired of parents who do not have children with special needs trying to equate their struggles with ours. I realize they do this with the best of intentions, trying to de-emphasize our family's "difference." But it actually has the opposite effect, as far as I'm concerned. They have no idea. I'm not being a drama queen. I don't want a pity party. I'm just being realistic.

Part of the problem I am having in writing about my experience parenting Stella is I'm afraid the whole thing will sound like whining. I suppose in once sense it is the question that plagues all memoirists--"Am I being self-indulgent?"--and in a way memoir is inherently indulgence, but I want to make sure there is some value for the reader. That's my goal, anyway.

Monday, September 24, 2007

Meet the Press: NYC Style!

I just got off the phone with a very nice gentleman at the office of the Public Advocate. I had emailed them last week regarding the difficulties we are having with Stella's school transportation.

It's so discouraging and complicated I haven't even mentioned most of it here. When we realized that she was the first picked up, last dropped off, of 10 students on her small bus, we submitted a letter from our pediatrician the first week of school to be included in her IEP (individualized education plan), stating that she should not be on the bus for more than an hour.

Despite all our efforts she is now riding the bus a total of 4-5 hours each day. She gets on at 6:30 in the morning (school starts at 8:20, and we don't know if the bus even gets here there on time) and doesn't get home until at least 5:30 p.m. (dismissal is 2:40).

Dozens of follow-up calls, and at least one formal complaint later, we find out today that there is a form the doctor needs to complete to submit to the powers that be.

Anyway, after explaining that his office was aware of a 5 billion dollar cut being absorbed by the special education system, with cutbacks being made regardless of the human cost, the nice gentleman asked if we would be willing to talk to the press about our situation. Um, yes, I said.

Bob has started a folder of paperwork and various records about our dealing with the bureaucracy and named it "Stella War Files." When the reporters call, I will hand the phone to Warrior Dad.

Let's hope this does some good for Stella and other students like her.

UPDATE: Bob just got off the phone with Channel 7 Education Reporter Art McFarland! He and his crew are going to meet Stella after school on Thursday, follow her bus home, and interview us. Sad but true: in our society, you have to get the media involved to really get something done!

Tuesday, September 18, 2007

argh

A big contributing factor to the Funk is sheer, absolute panic. My mother-in-law, who has lived in our building for 8 years, announced last week that she is moving by this coming weekend. This means huge changes for us, in a very short time. First of all, this awesome woman, who moved in two months before Bobby was born, will no longer be right downstairs. Secondly, we will not be able to use her apartment as an "annex" to our tiny, cramped, dump of a place. Family gatherings in our building will cease (our place is too small to host our growing family). We will no longer be able to use her printer/fax/copier, steal her New Yorker magazines and NY Times, borrow the proverbial cup of sugar (or, in Bob's case, coffee). Our child-care situation will change--no more occasional sleepovers at "Gramus" when Mom and Dad are going to be out late, no taking the kids downstairs for a bit so Mom or Dad can work upstairs.

The last few times we renewed the lease on our undermarket, unrenovated two-bedroom, we rationalized staying another year with the assumption that we would have Ma's place to spill over into while she was at work. (And she was always very generous in allowing us to invade her home.) At the time it did not occur to us that she would move. Even if we could afford to move, now we're stuck until next August in a home that has been non-functional for quite some time.

Yes, this is totally selfish. The landlords had jacked up her rent ridiculously, and her new place (which is in the first floor of my sister-in-law's building) is lower rent and newly renovated, and there's a new grandbaby just two floors up. I'm happy for her, I just wish we'd had more time to prepare, could have seen it coming. And it would help if we had more than $29 in our checking account right now.

And while I'm venting, feeling childish and self-absorbed, one more thing, in case anybody is listening: I am on sabbatical, not on vacation. This is not "free time" to play around, nor does it mean extra time for home improvement, cookery, or even playing with the kids. My employer has granted me a leave from teaching and administrative work so I can complete a project (based on a proposal, submitted last fall, that in itself took a great deal of effort and time I didn't have) the proportions of which I have never before completed.

For the first time since 1996, I do not have to help other people with their writing (dozens and dozens of them at a time--I've taught 4-5 classes, or the equivalent, each semester for over a decade). I can focus entirely on my own. Unfortunately, this is not always freeing. This is, in fact, scary. Especially because I am accountable to FIT for this time, and I must produce a book. I am daunted and stressed, my courage is faltering. I only have one semester, and it's going by much too quickly. I've waited a very long time for this, and I will have to wait seven years for another such opportunity. The last thing I need is to feel guilty on top of it.

Monday, September 17, 2007

major funk

Sounds like the name of an imaginary military dude, right? Major Funk, the bell-bottomed, feather-hatted superior officer to Sgt. Rock and Sgt. Pepper. Unfortunately, it's nothing quite so colorful or amusing. It's my state of mind for the past 5-6 days.

Friday, September 14, 2007

reading is fun-damental


Opening with an old slogan from my childhood (whatever happened to the RIF program?) to muse on the power of the book.

Yesterday I was in our favorite local restaurant waiting for Bob and the kids to arrive, reading my most recent purchase: Chapter after Chapter by the amazing Heather Sellers. A little boy came up to me (he'd been sort of walking back and forth from his family's table to the front of the restaurant while his party got a baby in the stroller and figured out the tip) and asked about the book. I told him it was for people who wanted to write their own book and had advice about how to do it.

He told me he loved books, and that he was into the fourth Harry Potter novel. I assumed he had to be older than Bobby, but said "I'm seven, almost seven and half." I asked him if he liked the movies or the books better. "The books are more extravagant," he said. "But I like them both."
I so want Bobby to be friends with this kid! (didn't get his name this time, but maybe we will meet on the playground)

Later, much later, I found myself engrossed in Erin McGraw's The Good Life, a collection of devastatingly good short stories. It had been an exhausting day. I had struggled with some sort of serious mental funkiness for over 48 hours, manifesting in various negative patterns. Now, immersed in Erin's world of an alcoholic priest, a frustrated divorced mother, and a self-help author who attends morning mass for her injured, controlling mother, I literally couldn't stop reading. The door clicked open--Bob returning from his gig at Iridium with Lee Konitz--and I checked the clock. Two-thirty!

The power of good writing. I hope I can provide this for my readers, enable them to lose themselves, lose track of time, take them away from the angst and sturm und drang and whatever Germanic term you like to describe their own noisy brains. That's the only thing that matters.

Tuesday, September 11, 2007

remembering 2001

This hard date is hitting harder this year, perhaps because this is the first time since 2001 that it has fallen again on a Tuesday. I thought I would post an excerpt from my essay "Elements" that deals with that terrible time.

Fire

Four weeks before Stella is born, I am on the sixth floor of the B Building at the Fashion Institute of Technology on 27th Street in New York City. My nine a.m. composition students point out the south-facing windows: the World Trade Center, one of the towers billowing smoke. In the hallway, a colleague says a plane crashed into the building—we picture a small craft. We go to our classroom, convinced it’s nothing, a crazy accident, easily taken care of. We feel something like relief—numbness?—and are almost laughing. It isn’t until hours later, after the towers have dropped from the sky, that I see the flames on seemingly endless TV footage at a Manhattan friend’s apartment. When I finally make it home to Queens, it is nearly sunset and the smoke and haze color the southwestern sky.
When Stella arrives on a brilliant Columbus Day, a more private disaster is revealed: she has Down syndrome, which was suspected but not confirmed by prenatal testing. Worse, she has a congenital heart defect—a hole in the membrane between the chambers—a common result of the genetic abnormality Trisomy 21. For months we wait and watch, take her to the Dr. Friedman, the pediatric cardiologist, give Stella medication, hold our breath. Finally, in late spring, the doctor gives us the news: the time is now. To avoid damage to her lungs from pulmonary hypertension, our daughter must undergo open heart surgery to repair the defect.
The heart is a braid of membranes, veins and tissue—a muscle and an organ. My heart has a hole it in, as surely as hers does. Hers can heal. Can mine?

Monday, September 10, 2007

Stylin'



I can't resist posting these photos of my handsome son (almost 8, can't believe it!). Our cousin Melissa spiked his hair at a family gathering on Labor Day weekend. Thanks to Judy for the photos.

Thursday, September 06, 2007

getting in (writing) gear, finding a groove

It's happening. I joined a writer's community that provides space (a nice quiet room with cubicles, lockers, a kitchen) and have an office to go to for my work. Today was the third day, and so far this week I've written 33 pages (not counting warm-up exercises).

I cannot emphasize enough how amazing this is.

Thank you, muse! Thank you, Julia!

Tuesday, September 04, 2007

First Day Blues

Stella started the school year today at the same District 75 program she was in over the summer. Unfortunately, the bus situation became a major drag. We put her on the bus at 6:45 a.m., then got Bobby ready and dropped him off around 8. I called Stella's school to make sure it was Ok for us to visit, got three separate numbers to call and got no answer, really, so we headed over anyway.

It was a good thing, because when we arrived, her teacher Mrs. T., was standing outside and thought we were bringing Stella. Her bus had not arrived. It was 9:15 by this time, and school started at 8:20. Five billion phone calls and many minutes on hold later, Bob determined that her bus had broken down en route, so the company had to send a replacement. It did not arrive until 10:00. She missed the school breakfast. But she was glad to see us (esp. Dad) and we walked her to the room, and had plenty of time to chat with the "Psych coordinator" (i.e., school psychologist) for the special ed program, who is brand new and very nice. We also found out, to our delight, that Stella had indeed been getting all three therapies (speech, PT, and OT) over the summer and her IEP is being fulfilled at school (which was not the case when she first started there in May). Mr. S, the Psych Coordinator, gave us a tour of the floor and we got to meet her therapists, all very nice.

Bob filed a formal complaint with the Office of Pupil Transportation--meanwhile, I called the pediatrician's office to confirm that he had written a letter stating that she could not be on the bus longer than an hour for medical reasons. Bob will be showing up at the school again tomorrow to give Mr. S. the letter and see what time her bus arrives.

I was freaking out because the bus driver would not allow her to use the booster seat (she's still only 42 pounds), and when they got to the school another, older (and much bigger) child was practically sitting on top of her--actually she was standing, and Stella did not even seem to have her seatbelt on! Well, one thing at a time.

Saturday, September 01, 2007

trying to celebrate

These are the times that try and try
they grind you down
a gorgeous day, nothing but bright blue sky
a family wedding on the beach
and no one of our relatives understands how hard it is
to get us all together
dad's been up since six-thirty, spent an hour
cleaning up a poopie mess
no time to pack
no time to take a shower
we can't get through to them

Wednesday, August 29, 2007

roses in August

It's the most cliche of cliches, I know, but I have made it a point this summer to literally stop and smell the roses whenever I pass them. And in my neighborhood, that's pretty frequently, since a number of our neighbors have these lovely little gardens.

On the way home from an intensive walk in Astoria Park just now, I found three bushes with luscious new roses on them--in August! It's funny, two out of three produce these heavenly scented blooms, but the fuchsia colored roses have no smell at all, or at least it seems that way to me.

Tuesday, August 28, 2007

into a sow's ear...


Forgive me for oinking a bit, but now that it's really, really official (I just received the prize money check), I finally feel I can announce the first part of my two-part good news: my chapbook, Fine Motor, was awarded the Sow's Ear poetry prize, and will be published in Spring 2008!
Check out their website by clicking here.
Second part: sorry, you'll have to wait a bit longer. I'm still too nervous to announce it!

in case you're worried

I promise I will not be posting every raw bit of journal-writing here. I just wanted to show myself that I had something going.

Something else
Sometimes, I admit, I watch TV with the kids when I am exhausted evenings. We watch cable stations, mostly--Animal Planet, Discovery Channel, TLC, Food Network, sometimes the movie channels when something appropriate is on (which is surprisingly rare). Last night we watched a program called Incredibly Small about Kenadie, a little girl who has a very rare condition called primordial dwarfism. She was a little over 2 pounds at birth and is still unbelievably tiny, delayed in language and other developmental areas, but very energetic. At three years old she was only half the size of her 18-month-old baby brother. One of the scariest things is the high risk of aneurism, which means that the life expectancy of an individual with this syndrome is very short.

I could tell that Bobby was immediately comparing her condition to Stella's. I made sure to remind him that Down syndrome is really common, and doctors know a lot about it. Stella's health is excellent, and she has every chance to live a long, full life. I remembered that one of our favorite shows to watch together has been Little People, Big World. Bobby really feels empathy, I think, with these families as they deal with difference in their lives.

I think about what a good thing it is for this bright young kid to be so aware of other people's challenges. But I also worry about my sensitive son and wonder what it will be like when the inevitable questions are posed--or even comments made--about his little sister. What will be do when his friends use the word "retarded" in jest, or call someone "Downsy"? How will he feel later, when he becomes more and more responsible for keeping track of her? When it goes beyond checking on her and coming back to me with, "Stella is naked in the bathroom, holding the toilet plunger"? When I'm not here to report to?

I know he is strong enough and smart enough to deal with anything that comes along, but it does make me sad sometimes.

Monday, August 27, 2007

i wrote something

Thanks to my friends for the support!
The Difference
My daughter is adorable. She is sweet. She is smart. She has a very strong will of her own. She is capable of a great deal of things. She is growing. She always amazes us. She sometimes disappoints us, but that’s more about our expectations than anything.
She makes us feel overwhelmed. She presents a serious challenge, which we often do not think we are up to. She needs a lot, lot, lot of attention, time, patience.

Hmm. Which of these things could not also be said of our son? None, of course. But there is a world of difference. Bobby is bright, sensitive, highly aware of all sensory input, a spongelike entity who spurts out sound bites of our own voices when squeezed too hard. Stella, on the other hand, is “special.” She is “developmentally disabled.” Stella has Down syndrome.
The main difference is in our expectations. Bobby will excel, learn, grow, go to college, maybe even graduate school (both of his parents and most of his grandparents have advanced degrees), move out on his own, perhaps get married, perhaps have children. If all goes well, of course, which one never knows, but there is a great likelihood that at least some of the above will come to pass.
Stella’s future is a big question mark. She had early intervention, but she is still struggling with oral communication. She is nearly six years old and so limited in verbal expression that I am purchasing a sign language DVD for her today online. Her limitations produce a great deal of frustration for all of us—she ends up letting us know what she wants and needs in other ways, usually by tantrum or other protest, often physical. She is a lot like a child of two or three, “mine,” “me do it,” still not able to express herself in words and reason with us.

Getting a Jump Start


Today's the day. I have to start the actual writing. There are so many distractions--piles of laundry, babysitting arrangements, overflowing desk, floor, chairs, the great fire hazard that is our 2BR apt.

Yes, I am terrified. But it doesn't matter. I have to do this. No excuses. Starting now.

Sunday, August 26, 2007

Andrew Bird is saving my life

Listening right now to "Heretics," from his album Armchair Apocrypha. I discovered my latest musical crush/obsession/fascination while I was at Sewanee, listening to WFUV online.

You gotta love a guy from Chicago who plays the violin, right?

If you want to hear more, go to Andrew's myspace. Enjoy!

Saturday, August 25, 2007

Theater on the Fringe


Bob and I had the chance to catch two fabulous plays by friends of mine, part of the NYC Fringe Festival. I'd been looking forward to Jacqueline Goldfinger's The Terrible Girls since meeting Jackie (officially one of the Nicest People in the World) at Sewanee, and then I also discovered that Steven Fechter's The Commission was being premiered.

It was great to see two very different, very compelling pieces within three and a half hours on a hot, steamy Saturday afternoon.

Now we're off to celebrate with Jackie and other Sewanee friends--prosecco for all!

Friday, August 24, 2007

Artist's Way...Should I or Shouldn't I?

I just found out that Julia Cameron is leading a session at the Open Center this fall. It costs a lot of money. But a very dear writer friend of mine said she is worth it!

I'm really feeling the need for some help with my focus on writing. To put it another way, I'm panicking and freaking out!

Should I do this? Is it worth it? What do you think?

Home, sweet....???

We're back in NYC after a stopover in lovely State College, PA. The word "discombobulated" is not strong enough. I'm truly not able to figure out what to do first. And it's going to be hot, hot, HOT tomorrow. Ugh.

Had to get supplies for breakfast at our dear Othello's Deli this morning. Man, those folks need better ventilation! It was rush hour for short orders, and I came out of there smelling like grill fumes. Bleah.

I guess I have nothing profound to say. The kids are watching Noggin. I give up!

Monday, August 20, 2007

Sprang-feeled



Yesterday my brother David and his family left for PA, and I took the kids out for the day to give Grandma and Granddad a break. After some retail therapy, we took a (rainy) driving tour of some of my old haunts.

Snyder Park is the home of my first playground, it's where my dad played golf, it's the site of the infamous Dr. Dredge Tennis Program where I learned that tennis was not my forte.

Sadly, although the playground, tennis courts, and golf course look okay, most of the park is a mess--the lovely ponds are clogged with algae, waterfowl feathers, debris, the boathouses are boarded up and deteriorating.

Fortunately, the Memorial Arch at the Western Avenue entrance is still in very good shape. Here are two views of this landmark, from well before even my time (left), and the other from the present day (right).

Thursday, August 16, 2007

oHIo. w/kids and kings


Here I am at my parents' house. Using Dad's computer. In addition to Bobby and Stella, I brought along 2 of my brother's kids--Davey, who is best buddies w/Bobby, and Mary, who just turned twelve and has been a lifesaver.

I have to say that spending days with Stella nonstop is exhausting. She has been giving me opposition at every turn...everything is "No." Mary has helped tremendously--Stella loves her and will cooperate more with her. It especially works well at bedtime, since they are sharing a room, and Mary can get her to sleep.

I sneak in here to use email occasionally, but haven't really been writing much, of course. Reading a book from my Granddad's collection about the Plantagenet kings of England in my "spare time."

Friday, August 10, 2007

Overwhelm-ment

When I lived in Boston many moons ago, I had a group of friends who thought it was fun to speak "faux francais"--they'd take normal English words and put "-ment" on the end, and of course pronounce everything with an exaggerated fake French accent.

The word I've coined for the title of this posting is an example. It's not exactly grammatically correct ("-ment" is used to form adverbs, while what I'm looking for is an adjective), but it describes me right now. Since coming back from Sewanee on July 29th, I've been plunged into Mommyland. Bobby and I have had all kinds of bonding experiences--the good, the bad, the mundane, the extremely irritating, the completely demoralizing. Stella has been in summer school until today. AUGH!!!!!!!!!!!!!!!

I can barely think about writing. And I had made this commitment to write 50 pages (crap or otherwise) before my sabbatical officially started (which would be August 27th-ish). HA!

Well, time to go make pizza dough. If nothing else, I have reconnected with my inner chef, and we've avoided takeout for the most part this whole week. The family that cooks together...

Tuesday, July 24, 2007

good news afloat

I will not yet elaborate, but the Saint has received some very, very good writing-related news.

Oh, and I'm having a great time at the Sewanee Writers' Conference.

Sunday, July 15, 2007

deep doo-doo

I apologize in advance to anyone whose delicate sensibilities may be offended by this posting, but I gotta get this out, so to speak. One of our many struggles with Stella is potty training. She has been able to use the toilet for nearly 2 years now, but only in the past six months or so has she used it regularly, and even now there are lots of slip-ups, here and at school.

Let's just say we are not yet at the point where she consistently goes to the potty rather than letting it happen in the pull-ups. This makes for lots of messes which require quite a bit of energy to clean up, but today was a definite low point. Bob had taken her to the bathroom, but she took the potty seat off the toilet and refused to use it. Then, a few minutes later, Bob returned to find that she had used the middle of the bathroom floor instead, and (this is priceless) put the bath mat over it to try and cover up the mess.

It took over two hours, several heated arguments, quite a few tears, and tons of elbow grease on everyone's part to clean everything entirely. By the end of it, Stella was not the only one who had let loose a bunch of crap. The place still stinks of it all, literally and metaphorically.

It's times like these I remember all too well what our midwife Jeannie said when, pregnant with Stella, I told her we were not interested in amnio. "Couples who have children with disabilities have a really high divorce rate." I thought she was just trying to scare me into having genetic testing.

To quote Garrison Keillor, We Are Still Married. God help us.
Yes, indeed, God help us.

Thursday, July 05, 2007

Eleventh Heaven


Today is our 11th wedding anniversary, and tonight we celebrated by going out after I taught my first evening class (Creative Writing for Illustrators).
At my insistence, we went to Death & Co., a quaint hideaway in the East Village--I'd read something about their cocktails, which use vintage ingredients like various types of bitters.
I printed out the Plath poem and read it aloud to Bob on the way over. Some pretty intense stuff, not especially celebratory of marriage or anything!
Anyway, the bar was a little hard to find, mainly because of its coffinesque facade (and it is apparently inspired by speakeasies, after all). Inside, it was cute if dark and a just a tad "theme-y." The bartenders wear vests and ties, the menus are covered in black crepe, and the fishouse punch is served in actual punch bowls, with punch cups. We got a corner table and, after a bit of a delay in service, were able to enjoy some drinks and bar food in adorable little portions. I had a Black Market Manhattan (wheat whiskey, black tea-infused sweet vermouth, Angostura bitters), and believe me, one was enough.
Afterwards we grabbed some slices at Two Boots. I think we will have some of the Belgian truffles I got for Bob now...
Good night?

Wednesday, July 04, 2007

Independence Day


I'm alone here right now. Bob has taken the kids to Central Park on the subway, and I'm trying in vain to catch up on the mounds of grading I have to do for my online summer classes, not to mention prepare for my evening class, which starts tomorrow. I've just spent an hour taking care of stuff that students were supposed to do and dealing with late and missing work. Argh.

Still musing over Beverly Sills. If my post about her (below) sounds a little stiff, it's because I was typing on our ancient iMac, which is the equivalent of dancing in a straitjacket. I glanced at dozens of articles searching for more info about her children, and they kept saying that Sills basically quit her art entirely, thought she could never go back, after they were born. Her own daughter, her firstborn, could never hear her work. Then her son had multiple needs--developed epilepsy after he was born. The phrase that kept coming up was "She left the stage to care for her children."

This was the late 50s/early 60s. What else was she supposed to do? Fortunately for us, she changed her mind. I wonder what sort of support she must have had in order to do that. From friends, associates, her husband?

My wedding anniversary is tomorrow and I have unfortunately just said a cruel thing, unnecessary and selfish, to my husband before he left with the kids. Bob is a great husband, a terrific father. He basically teaches me what it means to be an artist. He unconditionally supports my creative work. He even likes my "midlife crisis poems," which would make some married men a bit edgy. I don't know why he puts up with my crap sometimes.

I just got an email from my dad that made me cry. I'd sent them an interview of me from the FIT student magazine, and he responded by quoting his favorite poems, all of which I remember him reading to us over and over. This was in response to a comment I'd made that I always wanted to be a visual artist but realized early on that I was better at using language to create images. He'd chosen passages from Byron, Grey's "Elegy," Kipling, etc., that he found to be particulary vivid. But he also cited one of my own poems, "Kids' Night at Kitty Hawk," as his all-time favorite. "Using language is, indeed, a very good way for a true artist to 'paint the picture.' We are very proud of you."

So I'm alone right now. It feels okay. It's a national holiday, but since we don't have any particular plans, and Bob has to work tonight, right now it just feels like a regular day without mail. It's taking everything I've got not to head to the freezer and polish off the pint of Ben & Jerry's AmeriCone Dream.

But I have a good, big, juicy secret: I have been writing poems again. More drafts in the last three days than I've done in over a year. It feels amazing. Sigh. Back to grading.

In the meantime, if you are looking for fun holiday-related web content, check out the latest issue of Everse Video, courtesy of the fabulous Ernie Hilbert (meeting him was one of the many benefits of my sojourn at West Chester) and his sidekick Paul Fleming.

I think I will have that ice cream after all. It's my patriotic duty!

Remembering Beverly Sills: New York Diva and Special Needs Mama


The NYC Classical station, WQXR, has been paying tribute to Ms. Sills this evening, so I thought I would read up about her. Lo and behold, she was not only a brilliant musician and arts administrator, but she was also mother to two children with special needs. Her daughter Meredith, who was at her side when she died, is deaf, and her son Peter is developmentally disabled and has lived in a care facility since he was small.

When her daughter was born, Sills put her career on hold, and when her son came along two years later and was diagnosed with severe disabilities and epilepsy, she stayed out of the spotlight for quite awhile. Eventually, she not only came back to the stage with a vengeance but also made a great contribution as national chairperson of the March of Dimes for many years.

The LA Times has one of the most comprehensive articles: http://www.latimes.com/news/obituaries/la-me-sills3jul03,0,5195897.story?coll=la-home-obituaries

Truly an amazing woman.

Monday, July 02, 2007

Evening

The child is screaming on her father's lap.
The lights are off, the rocking chair's relentless
urge impels her back and forth. She's screamed
the whole way home, the cab a mess of wrath,
the driver silent, everyone on edge,
the mother, in front, trying not to cry.
We have a little girl. She's one of "those
children," the "special" ones. "A little retarded girl."
"You know They find it hard to deal with change."
Finally,
she's quiet. Overtired, overfed, overstimulated
it's taken much too long to get her down.
Tomorrow she'll be up at six for school.
We'll put her on the bus and breathe a sigh.

Tuesday, June 26, 2007

Practice, Practice, Practice!



As everyone knows, that's way you get to Carnegie Hall, and I am proud to announce that my husband, brilliant bassist (and fabulous dad) Bob Bowen, performed there last night with the Lee Konitz New Nonet.
It's the legendary Lee's 80th birthday celebration, and Bob shared the stage at one point with Steve Swallow, who joined the Nonet and traded solos with Bob.
(New photo posted 7/13/07)

Sunday, June 24, 2007

A New Vision

Stella is wearing her glasses! In May we went to the opthalmologist and sure enough, she has astigmatism. We got the glasses three weeks ago and, let's just say the princess was not amused. Even though she loves to steal Mommy and Daddy's glasses and put on sunglasses, it was nothing doing here.

A couple of times she tolerated a couple of seconds; mostly, she threw them across the room. (these things cost three hundred bucks! We gave it a rest for awhile.)
The strategy has been to try and get her to tolerate them while watching Noggin or a favorite DVD movie.

Right now--ta-da!--she is watching Lady and the Tramp and they have stayed on five whole minutes. In fact, I just saw her push them up (rather than yanking them off). Here's to some new clarity!

Saturday, June 23, 2007

Stepping Up

Yesterday we spent the morning at a school ceremony for Stella--I haven't posted many details about her new placement, but it's been quite a journey. She has been transferred to District 75, not a geographical district but rather a dedicated special education program that has locations in each borough of NYC.
The first placement notice we received was for the "main site" of Q75 (i.e., the District 75 headquarters for the borough of Queens). We visited, got a thorough tour from Mr. Rose, the Guidance Counselor, and were hooked. Not only did the population seem much more at Stella's level, but they have music, dance, and drama classes in addition to all three types of services (speech, physical, and occupational therapy). A glimpse into the music room, where a ponytailed young man played a guitar and sang with a class of children with autism, told us this was the right place.
We signed the placement, and she was set to start May 21. We put her on the bus, then drove to the school to meet her and help with the transition. Unfortunately, Stella's bus didn't take her to the "main site." Unbeknownst to us, she'd been actually placed in the "annex," located in yet another remote neighborhood of Queens. Worst of all, the school itself did not even know Stella was supposed to be there! Fortunately, by the time we arrived, she had been placed in a classroom and was actually making pancakes (she loves to cook) and having a great old time.
Several weeks on, we are grateful about her new situation although there are minuses (not only is there no music, dance, or drama at this location, but the have NO THERAPY for her), a big plus is her teacher, Ms. Tubbs. They are working with her temper and stubbornness (maybe next they can help her parents with theirs) and bringing out her strengths. And, thank the good lord, they have a SUMMER PROGRAM.
So it seemed a little odd to be going to the main site for this ceremony. She'd only been there a few weeks and here she was in a white baseball cap with "mortarboard" attached. It was a great thing, though, and I only cried a tiny tiny bit. Some images.
I promise I will post photos of Stella in her purple striped halter dress with Snoopy logo as soon as they are downloaded. For now, some word-pictures:
the auditorium with scaled-down stage, ponytailed music teacher guy playing guitar and singing with each class
utter pandemonium--crying, running away, going off in all directions--in short, a normal preK/Kindergarten graduation
after the handing out of certificates: two older students (middle school age) performed a 50s-style dance, complete with twirls, dips, and the Twist
a classmate's family--mother in traditional sari, father in the Queens male uniform: Bluetooth, baseball cap, black camp shirt
Two adorable boys in navy suits
one class (all boys) wearing signs depicting various occupations--firefighter, teacher, elected official (!)
all the parents, some with younger kids in strollers or in tow--none of us set out to do anything but have a "normal" family, we did what our parents did--what went astray?
cake and cookies in the lunchroom--light periwinkle painted walls, colorful posters of the food groups, "Feed Your Brain"
the teachers and paraprofessionals--who are these people and why do they do this amazing work? Infinite patience, more than I have, I must admit--and they get so little compensation financially. Such gratitude.

Tuesday, June 19, 2007

Through.

It's official. I am through, done, finito, with entering poetry book contests. I will politely wait to hear from the contests I have already submitted to, and would be overjoyed to get good news from any of those esteemed publishers, but I will in the meantime be pursuing other avenues for getting the book into print. Which is perhaps what I should have been doing all along.

I have been publishing poems in national magazines for 21 years (my first publication was in Rolling Stone), and working on poetry what I would call "seriously" for 17. The current manuscript has been circulating for going on five years now. In that time I have revised, added, subtracted, re-ordered, culled, and reculled. Gotten feedback (often paid for it), taken it all under advisement, revised and retooled again.

I have spent literally thousands of dollars on entry fees. Saint Nobody has been a finalist and semifinalist many times in some very good competitions. Many of the individual poems have been published in magazines and anthologies, and several of them have won prizes. I have been told by experienced and esteemed editors that the book is ready for publication, that they only wish they could publish every great manuscript they get (Which after awhile begins to sound like the literary equivalent of "You're beautiful, don't change.")

Yes, that sort of feedback is all very nice. Yes, I feel good about supporting small presses and other publishers of poetry collections, but it's really time for some satisfaction. ("I can't get no...") Fortunately, I work at a "teaching institution," so I was able to achieve tenure without book publication. But there are many, many other opportunities that are only offered to poets with books. It's a benchmark of legitimacy, a bottom-line token that you are a "real" writer.

I am not railing against editors, presses, or anyone involved in publishing poetry. Nor do I think they should not charge fees. Having been part of the screening process for a contest for two years now, I understand the hard work that goes into the endeavor. I also understand the limited audience for poetry, and the costs involved, and I am grateful that anybody publishes books of poems at all. I enthusiastically cheer my friends when their books come out, go to their readings and book parties, buy and read the books, which I love and value, as my credit card bills will attest!

However, I am not getting any younger, and it is getting to the point that not having this thing out there is affecting my writing--which is the most dangerous problem of all. I have a solid book of poems waiting here, and I am willing to read anyplace, talk to whomever, contact reviewers, to do whatever it takes to sell my book once it's published. I do not feel that I personally have enough time and money to be wasting it (yes, it feels at this point like a waste) on this discouraging process. I am starting to feel like a sucker. It's time for a new strategy.

Sorry if this sounds sour, or even bitter. They did used to call me "Sour Lemmon" in grade school, after all.

I am going to go eat some chocolate now.

Saturday, June 09, 2007

West Chester Poetry Conference

Here I am, my fourth West Chester conference. This year I am in the critical seminar on Auden, and I chaired a panel celebrating Auden's centenary (yes, Wystan is 100!). Go here for the website. So much to tell...I promise to post a little bit when I get back.
Much more to say about Stella's school. For starters, there are no therapy services at the location where she was placed (which is not the school we had originally visited and approved). We are looking into the next steps.

Saturday, May 19, 2007

Stella's last day at PSQ112

We had a party at the school and brought refreshments for everyone, plus small gifts for her teacher, therapists, and paraprofessionals. The kids were jumping around and having a great time.
It was a good way to say goodbye, and there were tears. They've all been very great to Stella, and she quickly became a favorite. They're all happy that she will be in a situation that's better for her, though.
I'll post some photos as soon as Bob gets them downloaded!

Thursday, May 17, 2007

Farewell, P.S. Q112!

Tomorrow is Stella's last day at P.S. Q112. She has learned and grown a lot, and her teacher, therapists, and paraprofessionals have really been wonderful to her.
We're having a party for her at school to say goodbye. Hoping to be able to help her have a good transition to her new school next week!

Sunday, April 29, 2007

Stella School Update

With the advice of Stella's teacher, therapists, and special ed coordinator, we have decided to request a transfer to a different system. Stella will be going to a school in District 75, not a place but rather a type of school, focused specifically on kids with special needs, located throughout the five boroughs of NYC.

Last week we got word of a seat available in a school in a rather far-away part of Queens. Bob and I visited it and were very impressed. There are a few things to work out, but it looks as if Stella will be starting there within a week or two!

Sunday, April 22, 2007

Donde Esta Santa Nadie?

Life has been happening, so to speak. I need to catch up on things here. I will, I promise.
Some news: My mother has discovered my blog! Hi, Mom!

Wednesday, February 28, 2007

a few more photos







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

Saturday, February 24, 2007

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

Thursday, February 22, 2007

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?)

Sunday, February 18, 2007

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!

Monday, February 12, 2007

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...

Sunday, February 11, 2007

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?

Thursday, February 08, 2007

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...