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.

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

The DOE and the New IEP

I think we can all agree that in the best of circumstances each child should be educated in the Least Restrictive Environment.  I know of very few parents who jump and shout with glee when they are told their child needs an IEP.  I suspect most of us parenting in IEP land would be much happier to just be worrying about the latest exam prep for the newest Gifted and Talented program.

So as this spring's IEP meetings come to an end, I came across this gem under Special Ed News on the United Federation of Teachers website:  The Time is Now.  The article basically sums up that the teacher is an advocate for the student, not a pawn of the school district and that they need to recommend what is right for the child, which is as it should be.

The DOE and some administrators though seem to disagree.

My personal favorite quote in the article is the text of an email sent from a school administrator telling teachers attending IEP meetings the following:

“Please be advised of the following changes when recommending ICT for a student:

The maximum number of periods for a full-time ICT student should be 25 and not 30. The periods designated for ICT should reflect the subjects taught in the student’s classroom. Please do not designate any ICT periods for cluster classes.”

What the hell was that administrator thinking?  Did he or she think that an email directing teachers to limit ICT (Integrated Co-Teaching) services on a school wide (or maybe District wide) was a great idea?  I mean really, if you want teachers to jack kids over at IEP meetings, at least just whisper in their ears, don't put it in an email that will surface one of these days.  You think people would have learned not to put this stuff in emails. You'd think most DOE administrators are old enough to remember that Nixon never would have gotten busted if he hadn't tape recorded his conversations.

But then again, people like me are delighted that they were dopey enough to put it in an email since there is now a nice paper trail of decisions not being made in the best interest of the child but rather in the best interest of the school district.

Luckily I am reasonably happy with Eliza's IEP (well as happy as any parent ever is I suppose).  But what about the parents who are unhappy?  Or were convinced by the IEP team that reducing ICT services was in the child's best interest? Or who don't have the financial, emotional and mental energy to fight?  What happens to them?

Teachers have enough on their plates as it is, between teaching, filling out a million forms for the DOE, prepping kids for tests, changing their curriculum at the whim of the DOE, dealing with wacky parents,   The list of what they have to do is endless.  Now the DOE, or at least some administrators, want them to convince parents that their children need less services so the DOE can save money under this new scheme?  

If the DOE wants to reduce services to save money, let them put on their man panties and show up at the IEP meetings and say "hey we're not paying for this stuff anymore."  

Don't put teachers between the rock and a hard place.

First Grade Art Review

Traveling on Standby

Eliza and I spent yet another vacation on Saba. I know you are shocked to hear that was our vacation destination.

I have to say Eliza is one great little traveler. We were lucky to be able to travel using JetBlue Buddy Passes thanks to my friend Maria.  Although there is a risk of not getting on a flight (they are glorified standby tickets) spending $150 instead of $1500 was worth the risk.

Eliza has been traveling since she was an infant, and aside from a couple of unpleasant flights (okay, so really unpleasant flights) when she was two-ish, she has been a delight to travel with.  As she has gotten older she is quite keen on deciding what she is going to carry onboard for entertainment, how long the battery life of the iPad, iPod and DS are and, if we have a layover, she makes sure to bring non-electronic toys to play with so she can save her battery life for when we are aloft.

And she knows the rule is that if she wants to carry it on the plane she has to carry it. That may sound a bit harsh, but between a mini-knapsack and a very small bag with wheels, she can still fit enough toys to keep herself entertained for a week. 

Much to my mother's delight Eliza once again likes her My Little Ponies (which you cannot refer to as "the ponies" or the "little ponies" else you will be corrected as to their proper name).  Thanks to the inventor of the Ziplock bag you can pack a lot of MLP's into one bag.

And if you think that's a lot of MLP's you should have seen the gallon Ziplock with the Zoobles.  

Eliza also enjoys Chess, Checkers and memory games.  I came across these little travel size games:

At about $5 each they will probably not last a lifetime, but they weigh nothing since, although the pieces are magnetic, they are made from rubber so very, very light weight (and no I'm not one of those bloggers who gets paid to promote products).

But the most important thing about traveling with standby tickets is to have a kid who really knows how to suck up to these people:

On our way down we not only made both JetBlue flights but because Eliza was really, really nice to the JetBlue gate agents (shared her KitKat bars and asked if they each wanted a souvenir Zooble from her enormous travel collection) not only were put on both flights but got the lovely extra legroom seats. 

While we were on Saba we celebrated Easter with an Easter Egg Hunt with her cousins and friends.  The weather was pretty dreary and Eliza did not have much luck collecting eggs.  Her buddy Ruben though shared his stash with her and everyone went home happy.  The gelato helped ease the pain of not finding a basket full of eggs.

Of course no vacation on Saba would be complete without the requisite cemetery photos.  As we all know, this is Eliza's playground (well part of it).  Since Eliza isn't too familiar with the religious version of Easter, instead of your traditional Easter Pageant, Eliza and her friends put on an non-Easter Puppet Play in the cemetery.  

I must say our graves made for excellent stadium style seating.

But the best part of traveling standby is when they don't have available seats!  This forces you to spend a day or two on a lovely tropical island and enjoy the pool and beach (obviously we were not stuck on Saba, since there was a beach).

Eliza was delighted to have to stay a night on St. Maarten (I wasn't exactly distraught over the idea of not heading back to freezing weather in NYC).

We are so very thankful to our friend Maria for giving us the Buddy Passes and even more thankful that she has offered them again to us!

Is It Really Seven Years?

It is really true that Eliza Grace is seven years old?  Seven,  It seems like yesterday I was enjoying my stay as a long term guest of Lenox Hill Hospital thinking that I would stay pregnant for another 14 weeks.  Little did I know when I woke up on the morning of March 15 that I would have a baby before that night ended. 

Life with my little girl has been a wondrous experience.  Eliza Grace is strong, determined, funny, artistic, kind and caring.  She is simply a joy.  I can't wait to see what the next seven years bring.

2006

2007

2008

2009

2010

2011

2012

2013

Oh the Places You Will Go

I love you with all of my hearts.

Really, You Wouldn't Change a Thing?

As you might imagine I tend to visit a few preemie websites (OK, probably more than a few)..  Not as much as when Eliza was younger or when I was in the hospital for several weeks waiting for her inevitable very early birth seven years ago, but I still pop on to some of them now.

There seems to be a recurrent theme on a lot of websites about preemie parents who "wouldn't change a thing" about their journey which resulted in their child's premature birth.  This sentiment is often declared in the same breath in which these same parents are seeking help, guidance or maybe just a listening ear about their child's delays, medical issues and their own anxieties about what the future will hold.

I will unabashedly admit that I do not understand the sentiment that a parent "wouldn't change a thing" about their child's journey through Preemieville.  Really?  You really wouldn't do anything to have stayed pregnant a little longer, have your child need one less day on a ventilator, one less infection, one less transfusion, one less procedure, one less evaluation, one less therapy session, one less accommodation on her IEP?  Really?

Now some will say that this would mean I would want to change Eliza or who she is.  Of course  I don't want to change my child.  Eliza is a delightful, loving, beautiful, funny child who is more tenacious than most adults I know. 

And of course I think she is "perfect" as I am sure most parents believe their children are.

But if I could change the past to take away just one day of  Eliza's pain or suffering I would do it in a minute.