whole children rock! and stella writes!!!

Thanks to Emma Sage's mom, Tara Marie, I just found out about Whole Children, an organization in Western Massachusetts that provides "recreation and enrichment programs for children of all abilities." On Mother's Day they presented a concert, called "Everyone Has a Voice," with none other than our fave rocker-turned-kid-tunesmith, Dan Zanes. Two years ago Stella and Emma Sage (and their mamas) got VIP treatment at a Dan Zanes and Friends concert to celebrate Emma's 7th birthday.

Whole Children is just the sort of thing I wish we had around here somewhere. I can't imagine how thrilling it would be for Stella, who turns any suitable object into a microphone and belts out number after number, to sing with a group of other children.

Speaking of Stella, yesterday Bob showed me that she had written her own name without any help! And said the name of each letter as she wrote! This is a wonderful milestone for our girl!

world down syndrome day

It's World Down Syndrome Day again, 3/21 (get it? Trisomy 21). The National Down Syndrome Society has released a national policy update for the occasion. I particularly applaud the point, "Provide a first-class education for children with Down syndrome." We're not exactly thrilled with the education Stella has been getting in the NYC public school's District 75 program. I'll write more about this later--Bob went to the IEP meeting a couple weeks ago and we have some updates--but for now let's just say there could be more pro-activity going on.

Here's a fairly recent pic of Stella Bella, with her new glasses (which have already been lost and found several times and which she is not currently wearing a whole lot). Today is so warm there is no need for the coat and the stylish beret--we're going to head out into the sunshine soon!

parerez-vous....?

in need of chocolate

Here's why:
*Work stress is hitting an all-time high; I will not even begin to go into particulars.

*YAI just informed me that they can no longer pay for Krystal's in-home respite services until a Medicaid waiver is on file. Earlier in the year we were informed that the agency was having to use funds from Medicaid for the clients' services (due, I believe, to state budget cuts). I thought we had done all the paperwork for this in the spring, but apparently not. Krystal called and said her supervisor told her not to come today--I am going to pay her out of pocket until I regroup and figure it out.

*Bob is taking the kids to be with him family for Christmas. This will be the first Christmas in their lifetimes that they have not been with me. I suppose it goes without saying that divorce sucks.

Fortunately, I picked up a B.T. McElrath Dark Chocolate Bar ("our proprietary blend of European and Columbian chocolate, 70% cacao") yesterday at my Thursday morning coffee place. It is truly the smoothest, silkiest dark chocolate I have experienced in a very long time. Goes well with the Guatemalan dark roast I purchased as well.

my friend, superwoman

I mentioned briefly last month that Vicki Forman's stunning memoir, This Lovely Life, has been released by Houghton Mifflin/Mariner. She has a fabulous website for the book here that mentions all the reviews, public appearances, and other attention it has garnered.

And as if that weren't enough, Ms. Forman has just completed a very strenuous certification program and exam, and is now a certified phlebotomy technician! Go over to her blog and congratulate her!

Vicki's wonderful book is finally out, and here she is talking about the experience of premature motherhood on "A View from the Bay."

Avery's surgery a success!

Sounds like all is well with this little one in Seattle...

I remember how amazingly quickly Stella recovered from her surgery, at nine months, to repair a ventricular septal defect (VSD). I think is took her parents awhile longer.

prayers for Avery

It had been awhile since I had caught up with Jennifer and her family. So, embarrassingly enough, it wasn't until Vicki told me that I knew Jennifer's son Avery was scheduled for surgery to repair a heart defect that had worsened in the five years since his birth.

Today is the day; they traveled to Seattle Children's Hospital for he procedure (read more here, in Jennifer's beautiful prose).

I know all too well the sense of helplessness when you give up your child and put her in the hands of others, and the tremendous fear, no matter how accomplished and celebrated those others are. I know many prayers and good thoughts are being sent their way, and many of us are waiting to hear how Avery is doing.

the nose knows

Stella has started doing the cutest thing: when you give her something to eat, or when she's around and you've gotten some food for yourself, she sniffs. Loudly. Sometimes she'll lean over her plate to test the aroma, even scrunching up her face in an exaggerated way.

She is definitely our foodie--her palate is much more adventurous than her brother's, and her appetite knows no time frame--she regularly demands pasta for breakfast, and this morning, I awoke to find her in the living room, chewing on something--"Chicken!" she declared. In the kitchen was an open container with the remains of a roasted chicken I'd gotten for yesterday's dinner, with some suspicious traces of ketchup on the lid.

She's also gone through a bit of a growth spurt and is quite a "solid" kid. Now is the time, I realize, for us to encourage her to eat healthy foods in healthy portions, and to exercise regularly. Fortunately, she's always up for an impromptu dancing session with Mom--or to her favorite Wiggles DVD!

back to school

It's the first day of classes for spring semester at FIT, and I'm starting right at 9 a.m. with Creative Writing. I'm excited to meet my new students and get into the swing, but it's been a real challenge to prepare amid some pretty serious personal tumult. Among other things, Bob has been out of town for over two weeks (he returns Friday), which means that I have truly been a single mom with all that entails. (Jenn M. et al., I don't know how you do it!)

Stella's sleep patterns have been even more erratic than usual (and there have been numerous poopie incidents), and it has taken both kids awhile to adjust to their dad's absence. But so far we're surviving and have even managed to have a little fun, like when we went into the city to get Stella's hair cut at Cozy's (the only place that can actually cut her hair) and afterwards to Patsy's for pizza. The spiritual work I have been doing has really made it possible for me to handle everything, along with the support of my parents and a couple of extraordinary friends. OK, time to finish the syllabus and head to class!

random catchup

I've been trying to be all literary/philosophical/witty/artsy/heartfelt/introspective/creative lately in my postings. And the result is that I have a bunch of fairly self-absorbed, occasionally cryptic pieces of prose that don't necessarily tell the story of what's going on in my life.

While I can't really talk about EVERYTHING, you know, I do want to give some various thoughts and updates.

How are the kids? They're pretty good. Really. Bobby had a flu this past week he caught in PA (thanks, David!)--it started on his birthday :( and he was home from school three days, which made for some scrabbling around so Mom and Dad could work. We're having a party for him and 6 or 7 of his closest friends tomorrow at the apartment (Lord help us). My baby boy is nine. Unbelievable. Stella is her strong-willed yet adorable self. Well, the strong-willed part is asserting itself quite a bit more than usual lately. Yesterday I got a call from her teacher expressing concerns that Stella has been having tantrums and crying fits, mainly around "transition" times. Everyone keeps asking, "Is something different at home?" but it really isn't--Mom and Dad each spend about the same amount of time with her, and the routine, other than the holiday, is pretty normal. I'm wondering if it connected to a cognitive growth phase--she is able to understand thing in more complex ways, but is still not able to articulate her own thoughts and wants and needs. I can't imagine how frustrating that must be. She can still be a lovey, though, despite her bursts of temper. And she has a fetching new haircut.

How's work? Oh, don't ask. It's the end of the term, and I'm facing the usual pile (physical and digital) of student work to comment on. This semester I'm teaching an extra class for some extra bread, and it's just about killed me. Fortunately, my students are great--they never cease to amaze me with their insights and energy. I really do love teaching at FIT.

How's your writing? While my participation in the actual process of writing has been limited to therapeutic journal pages and comments on student papers (and emails, text messages, and the occasion blog post), things are definitely a-brewing on the literary front. Last week I got the page proofs and cover design for Saint Nobody. Just sent in the corrections yesterday. After all the years and tears and fears, it's really, really going to be published. And thanks to Red Hen Press, it looks marvelous. And it looks as if Denise and I may have a publisher for our chapbook of collaboratively written ABBA poems--stay tuned on that. I'm hoping to get back to the memoir in January. We'll see.

How are you? Hmmm. That's a tough one. OK. Surviving. Praying a lot. Running and doing yoga when I can. Trying not to be too much of a drama queen (and you know how hard that is for me)--sometimes succeeding at that. Grateful for friends--amazing people I have leaned on this past year, listening ears and sage advisors and fun socializers and cool and smart and solid and trustworthy. I'm so lucky. I only hope I can be as good a friend to them as they have to me. And grateful for my mom, whose birthday is tomorrow.

this lovely book

Vicki is sharing with us the cover for her beautiful book, This Lovely Life. From all appearances, it will be almost as beautiful outside as inside. Almost.

She has also, miraculously, been blogging in the wake of her unthinkable loss. Some of the entries chronicle the painstaking process of revising her manuscript for publication. Six passes, she says! Brava, brave Vicki!

love for Evan's family

Please send your thoughts and prayers to my dear friend Vicki Forman, her husband Cliff Kamida, and their daughter Josie as they commemorate the life of Evan David Kamida. There is a public viewing this evening from 5-7 PST and a memorial service tomorrow at 11 a.m. PST. Vicki's blog has more details, and a beautiful photo of Evan taken recently at school.

what an idiot

The ever-vigilant Vicki pointed out this article in today's New York Times, evidence that there is still an incredible amount of ignorance out there about developmental disabilities. I won't even put the dude's name in this post since that would only give more energy to his words (and people would find my blog by googling him, argh).

music is life

Vicki Forman's Special Needs Mama column is always inspiring, but this month's piece resonates with me in a special way. She writes about music--how it brought her and her husband together with a shock (literally), and how important it has become in her son Evan's life.

One of the students in my online creative writing class, noticing the references to music in my poems, asks about the influence music has on my writing. Music is, simply put, one of the driving forces of my life. I studied piano and violin for years, and eventually also picked up the oboe and trumpet. In high school I played in the band, orchestra, and marching band (yes, I was a band geek) and was voted "most musical" in my senior class. I started college at Ohio Wesleyan as a music major for one term before switching to English and following my other love, writing. I still stayed active, though, by DJing on the college radio station.

And, of course, I have had a talented musician and composer in my life for 15 years. Even though our relationship has changed, I admire his commitment to his art and appreciate how he has been able to pass it along to our kids. Bobby and Stella express their musical heritage in various ways--playing the keyboard, guitar, and drums enthusiastically. This photo shows Stella sitting in with Dad and some other New York jazz musicians at the Pompanuck Farm Institute. I hope she and her brother will always find music an outlet for expression and joy, as I have.

and the winner is...the amazing VICKI FORMAN!

I'm so excited I can hardly stand it--one of my bestest mama blogger friends, Vicki, has won the 2008 Bakeless Literary Prize for creative nonfiction! Her powerful, beautifully written memoir, This Lovely Life, will be published by Houghton Mifflin.

Please stop by her blog to congratulate her, and to read about her lovely and amazing family. Then go to Literary Mama and read up on her Special Needs Mama columns.

CONGRATULATIONS, VICKI! GO GIRL!!!

happy world down syndrome day!

March 21 has been designated World Down Syndrome Day (get it? trisomy 21, 3/21?). This website has more information about commemorations 'round the world.

Now I need to go keep Princess Stella from getting black bean quesadilla on her Cinderella dress!

stella bus update

Stella's IEP (individualize Education Plan) has been udpated to reflect the heavily documented, hard-won request that she have a bus ride of 45 minutes or less each day.

So far, the driver is still picking her up at 6:45 (school starts at 8). We'll see what happens.

the poopie post

First, a disclaimer: Mom, please do not read this post. I'm serious.
So tonight I was cleaning the bathroom and realized that the main reason I could never, ever offer my place as a crash pad for writer friends coming to NYC for the AWP Conference: not the postage-stamp size of our home, nor the two little imps who live there and rise at 6 a.m., nor the probable appearance of a cranky Estranged Spouse. Simply put, I am embarrassed by the way we live. Take our toilet, for instance (take our toilet, please). If I used the bathroom at someone's house and it was as disgusting as ours was a few hours ago, I would be completely grossed out. As I scrubbed the neglected toilet I remembered that Bobby had two friends over yesterday for a playdate, and hoped for their sakes that the most egregious, er, deposits were very recent.
(Mom, if you're still reading, you really need to stop now.)

I was also reminded of the perils of potty training Stella and the utterly inadequate capacity of pull-ups at her age. During a visit to Grandma's, Stella woke up early and wandered downstairs only to make a poopie mess. My kindly mother went to get Stella first and, horrified, revealed that she had found feces on the kitchen floor. She actually pronounced it "Feece-us," and I was reminded of her grandmother, my Great-Grandma Gladys who used to call that instrument with black and white keys a "pie-anna."
(You can't say I didn't warn you, Mom.)

This is all to say that when you're faced with a crappy situation, the best way to deal with it is with humor. That, and a good pair of rubber gloves, and some strong disinfectant.

And on a more serious note, I hereby put out a second request for any advice about potty training from parents in T21-land! Tara, are you listening?

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!