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...

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!

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!!!

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?

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.

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!

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.

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.

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.

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?

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.

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!

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.

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