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.

Sunday, June 15, 2014

Hey There! We're Not Dead!

Nor have we moved off the grid.  

Well, we did move, but I don't think moving 7 blocks in Manhattan constitutes a major move ... unless you decide to have all three generations of Richter girls under one roof.

Yup, my mother is now a full fledged New Yorker once a again.  Her sojourn in the Garden State came to an end last fall and she, Eliza and I now live together.  The decision to move in together was well overdue.  My mom living alone in NJ and Eliza and I being only able to visit on weekends was not the best arrangement.  So after much thought we took the plunge.  Three generations ranging from 8 to 91 has its challenges at times, but the benefits outweigh the hurdles we occasionally face.  However, my mother and I will never agree on the right way to cook rice. 

And we have a fourth edition to the family in the form of Pikachu, our rescue dog.  Sadly we lost our beloved cat Bosley shortly before my mom moved in with us.  Although Bessie was not too thrilled when she discovered Eliza and I surprised her with a dog, she has come to love the little fur ball and I think she is jealous that he sleeps in my bed not hers.

This school year has presented more challenges for Eliza than one kid should have to shoulder (or that one parent should have to deal with).  In the past two years her class size was manageable for her and she had the great support.  This year Eliza's class increased in size by almost one-third and it has just been overwhelming for her.  To make things more difficult she was continually bullied by another student who began with verbal taunts (baby, stupid, dumb) and then escalated to violent behavior against Eliza.  Despite a DOE "no tolerance" policy for bullying, he physically assaulted Eliza on two occasions and even went so far as to say he was going to kill her. It appears that the "no tolerance" policy means that it takes almost 6 months to remove the offending student from the school.   

In the DOE's continued slow boat to China method of addressing issues, it took far longer than it should have for Eliza to have her Assistive Technology evaluation.  Eliza will now be given a word processor for class work, which she can also use at home.  Given that her fine motor function score for her dominant hand was in the 4th percentile, being able to type her classwork should be a great help.  She has been typing her homework almost all year and it has helped to diminish the angst that homework creates.  But more on the DOE later ....

Eliza is counting not the days, but the hours until school ends and I can't say I blame her given this past year in school.

Thursday, June 27, 2013

June 26, A Big Day

June 26th is a big day for Eliza.  This day Eliza will finish First Grade, exactly 7 years to the day  she came home from the NICU. 

I can vividly remember wheeling Eliza out of the hospital in her big bright red stroller with my Mom and Dad, oxygen and monitors in tow, a bag full of medications, a list of more doctor referrals than I care to count and a mixture of sheer joy at just finally having my baby to myself and abject fear of not knowing if I could do this alone.

When I look back over the past seven years, there were many, many times in Eliza's early years when I could never envision Eliza even attending a typical school, let alone thriving in a typical school. Eliza does have extra support in school and this most certainly helps her to thrive in school, but she can hold her own pretty darn well against the typical kids.  And this makes all the hard work and struggle over the past 7 years well worth it.

Not long ago someone asked me when the anxiety of the NICU and the period immediately after leaving the NICU goes away.  I suppose for some the anxiety magically disappears, but I think for many parents, like myself, the anxiety and fear lessen and morph into something else, but is always there (I still cringe when I see the NICU phone number pop up on my caller ID).  You spend so much time in the NICU waiting for the other shoe to drop that you just assume there will always be army boots falling on your head.  But over time the shoes that drop are more like slippers landing on your head, or maybe your head has just gotten harder.  There are still the occasional army boots that drop, like we have had this year, and while I am more educated about Eliza's medical issues and can process that information with less angst, It still takes me by surprise when something happens and with surprise comes anxiety,  So I think when people talk about accepting things you cannot change, I suppose I should just accept a certain level of anxiety.

The past seven years have taught me to never underestimate my child or any child,  They are stronger than adults are.  I am certain that if I had needed close to 7000 hours of therapy to do what my neighbor does with ease, I would likely have given up when things seemed just "good enough."  But not Eliza.  Although there have been therapists that weren't a "good fit" (a euphemism for "therapist sucked") most have been wonderful and Eliza has happily plugged away learning how to make her body work right, whether it is running, jumping, climbing, learning how to drink from a straw and chew some food, learning to how to form words and sentences, years and years after which typical kids could do so with ease.  We still have some goals that we need to reach like riding a tricycle or bike, getting dressed on her own,  handwriting and developing a coordinated kick so Eliza can learn to swim.  But you know what?  You can have a great life if you never ride a bike and plenty of people have poor handwriting..  Swimming is still a goal for safety reasons since Eliza's loves the water.  As to being able to get dressed on her own, well I've seen the way people dress and surely they could have used some help too.  Eliza has mastered skipping this year, so even if her running is never up to the standard for her age, she can skip and skipping is way more fun than plain old running.

A few years ago I had a little girl who couldn't communicate unless I carried around a 2 inch binder with a hundred PECS symbols and photos laminated and velcroed into the binder so in her frustration Eliza could point to what she wanted;  Now only 3 and half years later.Eliza can elaborate on why Pluto is only a dwarf planet, that the stars in the Orion Nebula are over 1 million years old, tell you what the Kuiper Belt is all about, discuss the difference between Van Gogh and Monet and speak German. So I think I can safely cross anxiety about communication issues off the worry list.

I also look back on the terrible dark days of the NICU when Eliza's body had begun the process of dying.  The conversations from those days are still so vivid.  But although Eliza has her share of medical problems, and some new and unexpected ones, I look at her now and wonder, how could anyone have ever thought she was dying?  But she was dying and I don't know what really stopped her from dying.  Sure there was a boatload of medications (with pretty sketchy side effects), but I also think, somewhere in her underdeveloped brain, she just didn't want to die.  And thankfully, she didn't, because if she had, part of me would have died too.  I think that was the tipping point for our relationship, which some people think is perhaps too close, but then they have not walked our path,

The best thing about watching Eliza develop over the past seven years is how she has matured into a very empathetic little girl.  She will walk up to a child crying and ask if they need a hug or if she can help them.  She will give her toys to a child who has none or who simply  who has less.  She is content not having a lot of "things" and prefers to making art to buying the latest plastic toys that she will lose interest in before the month is out.  I think these qualities will serve her well into adulthood. And she is one happy kid who wakes up each day with a smile and ready to (even on the days she awoken at 3 a.m. to head to the airport for our trips to Saba).

Eliza says she has 100 hearts.  She remembers her Papa and knows he can still laugh with her from where ever he is, but she also says she lost a heart when he died.  We have been blessed with family and friends who have shown amazing kindness for Eliza.  We have lost some friends and family who have either drifted away as life often takes us in different directions and we have lost some because they have chosen to be lost to us.  This journey has also brought us both amazing friendships as well, with people who we never would have met, had Eliza been born a healthy full term baby.

For seven years, Eliza has brought me joy and amazed me everyday.  And with the 99 hearts she has left, I hope she continues to bring joy to me and everyone she meets for a long, long time to come.

Homecoming June 26, 2006

Last Day of First Grade 2013