buddy walk...stella style!

The NYC Buddy Walk starts at the top of the "Great Hill" in Central Park, then winds down the path and out to Central Park West and back up to enter the park at 106th Street. We (that is, Stella, Bobby, our friends Adrian and George, and I) got off on the right foot, perhaps a little behind the curve, with perhaps a few more stops than the rest of the walkers, but then we took a sharp left at the practically brand-new, very cool Tarr Family Playground.

A giant sandbox. A water play area. Some really cool jungle-gym type things. It was no contest. This was where we ended up spending the rest of the "Walk."

There is a certain point at which you just give in and let the moment happen, despite the "plan." We have many such moments with our Stella Bella. This photo was snapped after her strip-down sojourn under the water sprayers (blessings to the anonymous woman who offered a beach towel). She was clearly in her element. And the whole thing really was all about her, anyway.

I sat on a bench and chilled. I chatted with George and cleared up a funny miscommunication (I'd been raving about the new Howl movie, and he thought I meant the "owl movie," Legend of the Guardians). When Stella moved out of sight range, George got up and followed her for a bit (he had also chased her earlier when she started running, and carried her piggyback when she refused to walk).

Then it was time to go, so we headed to our car (which George had parked for me after I spent a fruitless 45 minutes circling a 10-block radius for a space) and back to Queens. I felt a little weird about not participating in the events on the Great Hill--Bobby and Adrian did not even get their snow cones--but we had done the walk. And unlike last year, we had T-shirts. It was a beautiful day. Somehow, thanks to a little--or a lot of--help from our friends, and a few deep breaths, it had worked out for the best.

stella's stars...buddy walking in central park today!

our wonderful team logo by the stellar George Giunta!

We're walking in Central Park today to support the National Down Syndrome Society Buddy Walk! Despite our terrible loss, the memorial on Monday, and all the other stuff that's been going on (including a sprained ankle Monday night), I was determined to walk this year, and we've put together a little team for the event. It's a beautiful day, and I have a pair of high-top sneakers to get me around the trail. You can click here to contribute to our team. You can enter my name (Amy Lemmon Bowen) Bobby's (Robert Bowen) or Stella's (Stella Bowen) to go to our personal pages.

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!

spread the word

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.

back to the BAP blog

I'm an occasional (very occasional) guest blogger again this week on the Best American Poetry Blog. I finally was able to put together some of my thoughts and feelings about the use of the "R" word. I won't post again about it here...please go, Dear Indulgent Reader, to this link to read more.

down syndrome awareness month

Hard to believe that it's been a year since I took up Tricia's "31 for 21 Challenge" and posted almost every day during October, Down Syndrome Awareness Month. I've been too busy and distracted to post about it yet this year, but it has definitely been on my mind, especially as the election frenzy escalates.

Readers who know me will find it as no surprise that I am not a fan of Sarah Palin. I think McCain's choosing her was a cheap shot; I agree with those of you who think she is unqualified and find the prospect of having her as second in command downright frightening. I have strong objections to her political and ideological views, to put it mildly. I hope Barack and Joe kick their behinds all the way to the Arctic Circle.

But I have to admit that I am not ungrateful for the positive attention that her son Trig has brought to the Down syndrome community (I won't go into the negative attention, often in the name of "political humor," rife with uses of the "R word" and other slurs). The fact that someone so in the public eye is the parent of a child with Down syndrome can only shed light on the condition and the many individuals who have it.

Let's just hope some of that positive focus lingers, even when Trig's mom and her running mate, um, well....we shall see in just a few weeks, shan't we?

Oh, and as a special treat, here's a pic from Stella's day out in the city--including a Dan Zanes and Friends concert--last spring with her new friend, Emma Sage, and blogger mama pal, Tara (photographer extraordinaire).

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).

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!

Governor Paterson

It's just been announced: Spitzer has stepped down, and David Paterson is our new governor.

The circumstances are hideous, but I couldn't be more pleased at the outcome. Our first African-American governor, and one who (having a disability himself) is known for his advocacy for the visually and physically impaired. Columbia and Hofstra grad, father of two.

Go, Gov!

And hey, I just found out that they proclaimed March Developmental Disabilities Month in New York state. Who knew?

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.

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.

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!

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...

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?

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!