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!

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!

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.