Eliza Grace was born on March 15, 2006, at 26 weeks, 4 days, weighing 1 pound 4 ounces and measuring just 11.5 inches long. She is the light of my soul and this is the story of our life in the big city.

Saturday, July 26, 2014

A Year in the Life of the DOE

And How It Affected Eliza

From those of you who read my Facebook posts you probably recall my various rants about the DOE and its policies ranging from busing, to assistive technology, to bullying and a whole lot more.

After a pretty miserable year Eliza is now a very anxious child with self-esteem issues so I think a recounting of the year's events is in order.  And at least I'll have all of this written down in one place to print out for the DOE and whoever else needs a reminder of how we got to this place.

The year started out fairly promising, Eliza had moved on to the 2nd Grade and was a pretty happy kid who looked forward to school.  The promise that the year held dissipated pretty quickly with the bus.  

Ah yes, the Special Ed bus. 

After dealing with OPT for since Eliza was 3, I was pretty used to the bus bullshit and had a nice investigator from OPT on speed dial.  I had gotten so good at filing complaints and checking OPT's website each day that I could file a complaint in my sleep.  But this year was different. You may recall that there is no age restriction for Special Ed busing.  I bet you're surprised that a 38 pound seven year can be placed on the same bus as a 200 pound 20 year attending high school (actually several 18 to 21 year olds).  I had the chance to meet Eliza's bus driver on the first day of school.  Wilfredo regaled me with stories about how much he loooooves women, his great dancing skills and his even better conversational skills.  He was so kind that he gave me, a single mom, his phone number, in the event I wanted a good time or just to have someone to talk with!  Now that is some service from a kid's bus driver, very much above and beyond what his union contract requires I am sure.

As much as that bothered me (and the OPT investigator) it was what Wilfredo did every morning after he picked up Eliza to take her to her school less than a mile away.  Eliza was always getting to school late, but this made no sense even with Manhattan traffic, Wilfredo only needed to drive down our street, make a left turn, drive 8 blocks and make a right turn to get to the school.  So channeling my inner Nancy Drew I decided to take a page from my favorite sleuth and follow Wilfredo (and this being Manhattan traffic one can do that on foot).  I quickly discovered that Wilfredo was stopping at Dunkin' Donuts, parking in front of the high school where his other charges attended and enjoying his morning cup of Joe and a box of glazed donuts.  So I taped Wilfredo a few times and then confronted him.  He had the best explanation ever!  If he got to school early they would add more kids to his bus!  So instead Eliza sat on a bus for 30 to 45 minutes with about 10 high school kids.

Thanks to my friends at OPT, Wilfredo was suspended pending a union hearing and Eliza was assigned to a new bus (which was better, until the driver showed a bootleg version of Godzilla to appease the high school kids).

And then there was the bully.

After the bus fiasco, Eliza came home one day, not even a month into school, and told me about a boy in her class who had thrown her on the ground and tried to choke her. No particular reason, I guess he just felt like picking on someone that day.  Luckily a friend came to Eliza's aid and got an adult.  The boy was no longer permitted to attend after school (which is privately run on the school grounds), but after a day out of school he was right back at it.  While calling Eliza "stupid," "dumb," "baby," making fun of how she runs or plays ball on a daily basis may not seem as bad as choking her, the affect was nonetheless the same.  Eliza became unsure of herself, more isolated and her self-esteem suffered.  Because to a 7 year old when your classmate is calling you stupid, some part of that 7 year old starts to believe it, no matter how much reassurance she gets from those who love her.  

After being assured that Eliza would be kept safe, low and behold, this boy cornered her in a room and pointed a triangular shaped MagnaTile in her chest (leaving a small mark) and told her he was going to kill her.  As you can imagine my head burst into flames when Eliza told me this (note there was no note or call to me from the powers that be).  I know you are just dying to hear the punishment for this assault ... are you ready ... the boy had five coins removed from his behavior chart.  Pretty serious punishment don't you think?  Not.  But even more curious was when I spoke with the school about this, I was told that "in the child's defense," Eliza had been quite rude to him.  I have always tried to remain calm when dealing with the DOE, and school personnel but I could not help but scream "Are you fucking kidding me?  Did you just say that?"  I asked if by "rude" did he mean that Eliza would say in a loud voice when this boy came near her "I don't like you" "Leave me alone" "I'm not your friend" and things of that nature.  Yes indeed this was Eliza's rude behavior.  I was delighted to hear that Eliza had been following my instructions! It is sad that I had to teach her to say these things loudly but I thought it was a much better alternative to teaching her to hit the kid back.  Apparently this last event was one in a long string of behavior issues and the boy was gone shortly thereafter.  But the damage had been done.  Oh, and by the way, when your kid is the one being tormented the DOE apparently doesn't require the school call you, only the parents of the bully, or maybe they just avoid calling you to avoid a kerfuffle.  

Good to know you have to regularly ask your child "did Little Johnny assault you this week?"

And we capped off the year with an insanely long delay in getting Eliza's IEP amended to allow her to use one of these things:

What pray is this magical device?  Why it is a portable word processor for children who have issues that affect their ability to write.  Now you would think I was asking the DOE to provide Eliza with a $3000 laptop (and I did offer to have Eliza use her own Notebook from home ... but no, can't do that). This thing costs the DOE under $200, certainly not a dent in a budget that pays Pearson tens of millions of dollars for workbooks, test prep materials, test, etc.

There is no great mystery why Eliza needs this.  Her fine motor function in her dominant hand is in the 4th percentile.  She also has some processing and working memory issues that make writing very, very, very hard.  You would think the DOE would be delighted to offer up one these, especially after reading the very pricey neuro-psych report and me being repeatedly told "oh Eliza would do so well with a word processor!".  As an aside Eliza has been typing all of her homework since the beginning of Second Grade so there should be no surprises there.  But noooo.. Parting the Red Sea had to be easier.  First the paperwork wasn't right.  Then when it was corrected the DOE took all of the time allotted to have the AT eval on the last possible day. Fifteen minutes into the eval, the very lovely evaluator wondered out loud why this had not been done sooner.  So we began a trial with a particular device to see if that worked.  Of course the device was supposed to be used during certain periods, but the powers that be decided that it would be best to have Eliza use it when it was most convenient to them.  Huh?  I did not realize that convenience for the teacher was the guiding principle behind the IDEA.  So once again my head burst into flames when I was told "we were being "nice" letting Eliza use it more often" (said with great enthusiasm).  While I wanted to repeat the line "Are you fucking kidding me?" I decided to use this as a lesson in how to deal with parents whose kids have IEPs.  My gentle wisdom (okay so I wasn't so gentle) was to never, ever, ever tell a parent that you are being "nice" or "doing a favor" when you are carrying out the bare minimum that the law requires you to do.  Apparently the logic of limiting the use of the word processor was to "force" Eliza to learn to write by hand.  I asked if Eliza instead needed a walker would she only get to use it during PE and be forced to go without it the rest of the day to buck her up and walk better?  The answer I got was "well that's not the same."  Sadly I had to point out that it was in fact the same. That if a child needs a device, any device, per her IEP, then you have to use it in accordance with the IEP and your judgment (and utter lack of experience in these areas) does not supersede the mandate.

But happily the school year has ended and Eliza is doing nothing but being a kid this summer while I cross my fingers and rub the Buddha belly that life in a new school next year will be better.


Anonymous said...

Too much to say to fit in this space. We will talk, hopefully with the benefit of the fruit of the vine or perhaps martinis. My overall (nonspecific) gripe with the DOE is that "no one is accountable! You are at their mercy!" It is horrible and I feel for you and Eliza so much.

A friend whose ex-preemie son is now in his late twenties and who struggled in school benefited tremendously from computer use--from high school to late twenties his IQ actually took an enormous leap! Of course he was always smart but struggled but for the use of computers, while a work life honed those testable skills and gave him so much confidence! He also was bullied at school, but he has overcome and now is doing tremendously well.

What Eliza has had to go through at the hands of the NY public school system is heart breaking. But she will prevail! I know it! And she is so lucky to have a mom who is on the case every minute!

xxoo Dana

Katie said...

Even though I was trained as a school psychologist, it is this kind of bullshit that made me not want to work in the school districts. So glad you are able to advocate for Eliza's needs, but how wrong that you should have to expend so much time and energy doing so. Good luck to you!

Barb said...

I'm thinking the Buddha has to come through this coming year. Glad to see the happy pictures and the continued resilience of both of you. Fingers crossed for you.

Heather said...

Hi Anne. I am so moved by your blog. I am writing about preemie birth for a major magazine and I'd love to talk to you about it. Email me here if you're interested: hswood at gmail dot com

Ricki Goe said...

hello! I just want to say I'm a mom of 9-year-old boys born at 25 weeks and I love your blog. I've been reading it for a long time. I love how you are such a fierce advocate for your daughter. I also want to say that I just read a favorable review of a book in the New Yorker called THE LAST KINGS OF SARK which is set on Sark! Though you have probably heard this from various people already-- best wishes, Ricki