The Wheels on the Bus

Have fallen off.

On January 18 the school bus driver and matron union decided to strike.  As best as I can decipher, this entire strike is about whether or not the city will agree to include in bus contracts an employee protection plan.  I'm not sure of the details, but it seems that the union wants some protection for seniority in any new contracts the city signs.  The Mayor claims this would be illegal to include.  There is some litigation on the issue of whether the strike is legal or not, but the judge (ironically the same one who heard the litigation in the last bus strike in 1979) has not rendered any decision. He's old, so it could be a while before he writes a decision.

My mother reminded me that the last time there was a school bus strike, it lasted 3 months.  Three flipping months.  This semester will almost be over if this strike lasts as long as the last one.  The strike not only affects the regular yellow school bus service, but the special ed buses as well.  The city has given parents metro cards for the city bus and subway and will reimburse taxi fares (but only if you live in area where you cannot use public transportation and remember to keep the original receipt).  So for us it is the city bus.

By comparison to many families, Eliza and I have it easy.  We have access to a city bus in the morning with a very short walk, in the evening we have access to a city bus with a much longer walk.  Given the weather and winter darkness, the quarter mile walk to the evening bus is often unpleasant.  I've had to adjust when I get to work in the morning as well as Eliza's nighttime and morning routines to accommodate the new commute.  Eliza is pretty good with changing routines these days, but the bus strike is adding about an hour to her already long day and I can see this wearing on her.

But for those families who can't adjust their work schedules, who have other children to get to other schools or who have children who attend special ed schools far from home, the strike is an abject misery.  The percentage of special needs children who are simply not attending school is high because their parents cannot get them to school, or it is a 2 hour commute each way, or their children cannot use public transportation because of their disabilities.

And no one really seems to care.  

The media had a bit of hoo-ha at the beginning of the strike and now there is the occasional blurb about it.  Last night there was a meeting at Gracie Mansion (the Mayor's Mansion that our mayor doesn't use since he has a much, much nicer mansion of his own) between the union and the bus companies.  No one from the Office of Pupil Transportation ("OPT") attended.The Mayor didn't attend.  The only thing the union and companies could agree on was that the Mayor needed to be involved in any resolution.   Kind of would have been nice if he had at least shown up, maybe serve some cocktails.  It was his house after all.  You would think his sense of good manners alone would have required him to host the get together.

The new solution seems to be getting "replacement" drivers and matrons.  Despite googling in earnest I have not been able to uncover where the companies will find these replacements.  Will they just be unemployed people who happen to have a bus driver's license?  Will there be any background checks on them?  Will any of them know how to deal with special needs children (or for that matter a bus full of 30 typical kids)?  Will they know that my kid has to be buckled in?  Will they care if she is not buckled in?

Eliza has been riding the bus for four years, so we are pretty much special ed school bus professionals.  We've had our ups and downs at the beginning of each year, more so since starting Kindergarten rather than preschool and the problems usually related to the annual ritual of trying to figure out the bus schedule.  Until this year we had been lucky with our drivers and matrons.  This year was our first bad experience with a matron with Maria the Silent also known as Maria of the Shrug (who may win the award for Worst Bus Matron), but with the right number of complaints (and hours of wasted time) I was able to get Eliza's bus changed and the new driver and matron are great.  

Every morning Eliza asks where Miss Norma and Mr. Juan are and each day I tell her that their bus is broken.

It is easier than telling her OPT is broken.

The Power of a Kind and Caring Teacher

Eliza has had what I'll just call an "issue" at school the past month or so. Nothing awful, just a bit of a glitch.  I reached out to one of her specialty teachers to help Eliza and to help me resolve the issue.  In typical Anne fashion I wrote a probably far too detailed letter, sent it in and hoped for the best.  

The teacher took his time to talk with Eliza at length and helped enormously to resolve the problem.    And all it really took was some kind and caring words in his conversation with Eliza.  Eliza really looks up to this teacher and his input has made a world of difference in just a few days.  More importantly, he really went out of his way to understand the problem, Eliza's unique issues and to discuss it with Eliza in a way she could understand.  He was also very compassionate and reassuring in my conversation with him.

Teachers have an enormous influence on children's lives and by extension, a parent's life.  They have a tough job and we entrust our children to them for a huge portion of our children's lives.  As in any profession, there are some teachers who should think of a career change, but let's be honest, no one becomes a teacher for the enormous salary and annual bonus.

So if you and your children are lucky enough to have kind and caring teachers, tell them thank you every so often.  

The Life Cycle of the Brain

...according to Eliza.

Eliza and I have a lot of conversations about what activities we are going to do in our free time.  Luckily for me, Eliza is a pretty flexible kid who likes a lot of different things.  She is a wee bit obsessed with Kirby.

Kirby is a pretty OK little character who not only comes in an assorted sizes and shapes, but everything from key chains to plush toys, and also Wii and DS games.

Eliza is allowed to play video games (oh the horror!) but she is limited to how much she can play.  She has adopted the philosophy "there is more to life than video games"  which is refreshing.

The past couple of weekends I have been ill with one virus or another and since Eliza is an only child and my play skills were diminished, she played a bit more Wii than usual.  Tonight we talked about it and I told her she was back to her regular schedule of how much she could play since I was no longer lying around like a wet dish rag.

Eliza was OK with that and told me her brain's life cycle was OK with the idea too.

Her brain's life cycle?  Why yes!  There are 6 stages in Eliza's brain's life cycle.

First your brain reads,

Then your brain does animals (this could include the Museum of Natural History or the zoo),

Then your brain does art work,

Then your brain does Ninjago Legos (conveniently for Eliza's brain her mother's brain gets to assemble these),

Then you brain plays board games,

And last, your brain gets to play a little bit if video games.

Seems like a pretty good "life cycle" to me.  Now if we could work in eating and sleeping into that we'd be all set!

Not All Foods Are Created Equally

Nor are children.

I'll start out this little rant with the disclaimer that I clearly recognize that there are way, way, way too many kids in this country are overweight and eat crappy diets.  I get that.  I also get that your average 6 year old  isn't doing their own grocery shopping so the only way they are getting those crappy, pre-packaged foods are because their parents buy them for them.  I also understand that many parents, particularly over worked and under paid parents simply don't have the energy or the knowledge to feed their children better foods.  Unless you are over worked, under paid and have no access to a grocery store and a stove, then put your man-panties on and feed your kids a better diet. Or not.  Just leave my kid out of it.

If one more adult, who thinks they have cornered the market on healthy eating tells my child that her "milk" (which is a protein drink), her cheese and her peanut butter are not "healthy"  my head is going to burst into flames.  I have just spent one solid hour trying to convince Eliza that her "growing milk" is healthy and good for her.  For the curious among you, Orgain is certified organic and has more of what a kid needs in a day than your average 6 year gets from a freaking Happy Meal, or a "Lunchable"  (whatever the hell that is).  So if you're lazy and have a bucket of cash, buy a case of Orgain instead of pissing away money on a Happy Meal, your kid's body will thank you.

Why have I spent the last hour convincing Eliza that her growing milk is good for her? Why has Eliza been crying her eyes out for an hour?  

Because some people have been telling Eliza that dairy products are not "go" foods, that they are "slow" foods.  That dairy foods will make her fat and unhealthy.  Really?  Really? These people have seen Eliza.  Are they really worried that she'll become obese any time soon?

If you are going to tell a group of children what foods are good and what foods are bad and you know that one member of your little audience is a kid like Eliza, who struggles to eat every single day of every single week of every single month of every single year and who gets about half of the calories she needs in a day from something like Orgain, can't you use some common sense and add in a little disclaimer like "too much dairy isn't good for most people, but some people need more dairy, and that's OK for those folks!"  I seriously doubt there will be a line of kids clamoring to steal Eliza's Orgain if this disclaimer was issued in a way a six year old would understand.

And please don't tell me that if I put broccoli, or couscous or tofu or a hunk of beef in front of Eliza ten times in a row she'll eat it.  Clearly you know jack about pediatric feeding disorders, because at best this tactic might work with a picky eater.

Talk all you want about "go foods" but use some common sense when telling kids what not to eat.  

Just know your audience.

Oy.

The Santa Adventures Continue

For those of you following our annual tradition of searching for the "perfect" photo of Eliza and Santa, let me re-cap the past 6 years  before I unveil the 2012 (which personally may top the all time favorite, 2008)

The evolution of Eliza's relationship with Santa begins in 2006 (and for those of you concerned about the germ factor for the early years, I will tell you the secret and it isn't photoshop).

2006:   Fits in the palm of Santa's hand:

2007:   Deer in the headlights:



2008:  Abject terror and she leaps from Santa's lap (scaring the bejesus out of Santa):




2009:  Starting to think this isn't so bad, but certainly not talking to Santa:

2010:  Quite thrilled with the old guy and even chatted it up with Santa:




An added bonus for 2010, the Richter Cousins in their Ugly Sweaters:

2011:  The dynamic changed.  Eliza realized that Santa was the key to getting a Wii, and World Peace, so ingratiated herself to him by giving him a thumbs up to everything he had to say:

The Richter cousins also took a moment with Santa, sans Ugly Sweaters, but with oddly mismatched outfits:

And this brings us to 2012.  

Now at first you may be dismayed at this somewhat angelic photo of Eliza with Santa (but do not despair dear readers...).  Thanks to our secret knowledge of Santaland, Eliza was able to spend quite some time with Santa this year.  They chatted about her art work, her love of Don't Let the Pigeon Drive the Bus and the merits of Kirby versus Ninjago.

Sweet, eh?

Santa invited the Richter cousins to sit and talk about world peace and love for a while and finished up asking Eliza to do a portrait of the two of them for him to pick up on Christmas Eve (a request she will oblige):

We took our leave of Santa and headed to the elves who will gladly give you photos from Santaland for a small donation.  

And before our eyes what wonders did appear!  

We didn't have Ugly Sweaters this year, or a wee child leaping from Santa's grip this year.  

Instead we discovered the "Give Me the Toys Old Man" photo:

Yes!  And here I thought we would break our tradition of spontaneously bad Santa photos!  I must say that Eliza's menacing glare is rivaled by that glint in Dana's eye which is sort of taunting Santa, as if to say "don't even dare disappoint this kid!"  And Peter smirking in his Santa hat, hinting that he can take over the old man's job should he fail t deliver because he already has the gear and can drive a mean sleigh.

Perhaps Santa was aware of Eliza's unlady-like sneer before he met up with us and was simply cowed into giving into Eliza's demands?  Perhaps he wasn't as sweet as we thought, but just scared to say no to Eliza?

Christmas Day will reveal if Santa "granted Eliza's wishes"  or "caved into her demands."

Merry Christmas one and all!

The Little Yellow School Bus

I think every parent dreads the day they put their child on a school bus for the first time.  Let's face it, you're handing your child off to someone who could have an awful driving record, been up all night partying and who may not really care all that much for their job (and your child).  99% of the time the drivers and matrons are great and the kids enjoy the ride much more than any of the parents ever imagined.

Eliza is a bus professional since she has been riding a school bus since she was three and a half.  She and I are no strangers to the foibles and follies of OPT (the Office of Pupil Transportation) and OPT's ineptitude in providing services pursuant to a child's IEP.  This year started out, as does every year with missing buses, late buses, changes in buses and most infuriating a bus company that never answered their phone.  This is though just the usual crap a parent of a special needs child has to deal with on a regular basis.  Really it should not be this hard to get children to school.

But this year was the first year Eliza had to endure school bus bullies to which the matron and driver turned blind eyes. And it infuriated me.  Since Eliza receives special education bus services, she is on a bus of 12 children, who range in age from Kindergarten to 5th Grade.  Because Eliza's school is small, OPT and the bus company, MV Transport/Reliant seemingly want to save a few bucks and not provide a bus solely for Eliza's school.  There is just no money in providing a bus just for two or three kids. This would be all well and good if the bus matron actually did her job and monitored behavior on the bus. 

But no, listening to her music on her iPod was more important than making sure there was no verbal bullying and name calling on the bus. After a few weeks of school Eliza started to tell me about the "bad' words the big kids on the bus would use.  Things like "dumb" and "stupid."  In our house these are bad words. As I talked with Eliza I realized they were calling her dumb and stupid. Then Eliza asked me what "dumb ass" meant.  I think at that point my head burst into flames. I spoke to the matron, who is known as Maria the Silent and she just shrugged.  Shrugged.  Wasn't shocked or apologetic.  Just shrugged.  I asked her what she was going to do about, and again all I got was the shrug.  And it was that shrug that made me the most angry.  Because it meant she really, really didn't care about the children.  

So I filed my complaint with OPT, MV/Reliant and got a lovely note saying they were going to put a "seating plan" in place to solve this problem.  The seating plan would have Maria the Silent sit next to Eliza in the front seat.  While there are many obvious problems with this quick fix, like the fact that there is no "cone of silence" in the front seat so that Eliza couldn't hear the verbal taunts, or that Maria the Silent surely wasn't going to hear anything until her ear buds were removed, the main problem with this solution was that the bus seating plan already required that Eliza sit with the matron in the front row.  I pointed this out and was advised that OPT and the school which the offending children attended would devise an action plan to discuss verbal bullying.  But in order to put this action plan in motion, I needed to supply the names of the offending children.  Really?  My 6 year old 32 pound kid was supposed to be able to identify, by name, kids who were virtual strangers to her,who were twice her age and three times her size, who did not even attend her school?  Really?  Because when you are 6 and sitting in the front of the bus you are supposed to know the names of the 4th and 5th graders at the back of the bus who are calling you stupid for believing in Santa? I don't think so. But Eliza is a perceptive kid and knew the names of two of the bullies and could identify the jackets another two wore.

I wrote letters and emails daily for the rest of the week.  Finally OPT assigned a new bus for Eliza and her classmate.  A bus with only them on it.  A bus with a matron and driver who are respectful of the children and who seem to care about their jobs, who call to let me know when they are running late or early, a matron who gets out of the bus and stops traffic so it is safe for Eliza to get on the bus, a driver who greets Eliza and me with a smile everyday.  And neither one has an iPod and ear buds.  I'm sure OPT is not too happy about paying the extra costs, but too bad for them.  While this solution is a good one for Eliza, I highly doubt that the promised anti-bullying speech was ever given to the kids at the other school and I doubt those children and their parents and teachers were ever contacted.  And Maria the Silent is still hard at work listening to her iPod and sooner or later some other child will suffer needlessly on her bus.

So if you have to complain about your child's school bus, make sure that OPT gives you a complaint number.  They tend to try not to provide this and I suspect it is a ploy to keep down the number of recorded complaints.  Remind OPT that being bused to school in a safe environment is required by law and feel free to sight every single applicable federal, state and local law.  Get your child's school on board to file its own complaint.  If you are filing your complaint via email, send copies of your emails to OPT via certified mail.  If your child can provide any identifying information about who is taunting them include that information too. 

And don't let them wear you down.  OPT pays bus companies tens of millions of dollars a year to provide special education bus services.  The population these companies serve is often the most fragile children.  Make the companies, drivers and matrons honor the obligation they have to make sure that your child is in a safe environment, both physically and emotionally as they are brought to and from school.

Prematurity Awareness Day

Today is Prematurity Awareness Day.

Technically November is Prematurity Awareness Month, but since every cause now has an awareness, day, week, month, some causes tend to get lost in the shuffle.

A few years ago I posted a lengthy blogpost about why prematurity sucks.  Below is my updated version of it (yes it is okay to plagiarize myself).

I think the main thing we need to be aware of about prematurity is that it sucks.

It really sucks.

Prematurity takes what should be a normal infancy and turns it into a journey into medical hell. It robs both parent and child of a normal infancy. Instead of filling baby books with milestones like "smiled for the first time" you make note of milestones like "weaned off ventilator." 

You and your baby are robbed of quiet, private moments. Instead, the two of you spend those moments in a room filled with strangers, doctors, nurses, monitors, alarms and machinery you didn't even know existed when you filled out your baby registry.  

People tell you well intentioned, yet terribly inappropriate, things like "things happen for a reason," "God doesn't give you more than you can bear," "at least you never got stretch marks since the baby was born so early" or "you're lucky you get to sleep at night since the baby is in the hospital."  It would be better just to say "wow this sucks" or "is there anything I can do to help" and actually mean it.

You wake up day after day wondering if this is the last day you will see your child.

Prematurity financially devastates families. 

Contrary to popular belief, there is no insurance fairy who pays the tens of thousands of dollars of co-pays or the endless "uncovered" things like speech therapy or adaptive equipment. Even "good" insurance isn't "good enough" to cover prematurity. Instead of paying for a babysitter, you have to pay for a nurse to watch your child, instead of daycare, you have to hire a nanny, instead of working full time you have to take a leave or work part time because of the sheer number of medical appointments your child will have after leaving the NICU.

Prematurity is isolating, physically and emotionally. 

Because of the baby's fragile immune system, you have to limit to whom and what the baby is exposed. Of course friends and family assume you are simply nuts, because, as they will all tell you over and over, everyone needs to be exposed to germs. Actually not. It is emotionally isolating because no one, other than the other shipmates on the SS Prematurity have even a clue as to what it is like to take your infant to a minimum of one doctor visit every week, not have a single day for just you and your baby because three therapists show up everyday, on schedules that are convenient to them not you and your baby.

Prematurity devastates families emotionally (see all of the above).

Prematurity doesn't necessarily end when you leave the NICU.

Depending upon the level of a child's issues resulting from prematurity, parents may spend years and years fining the right school, the right educational model, the right educational tools to help their child learn appropriately.  If you are a parent of a typical child, teach your children to have compassion and empathy for  children who may learn differently from them. Ask us why our child has an aide or para, before just assuming that it is for some outrageous behavioral issue.  And stop using the word "retard" in your everyday language. Just stop it.

So what can we all do to help make this suck less?

Well, you can donate money to various charities in the hope that some of the research they fund might end the many, many causes of premature birth. 

Or you can do something a bit closer to home and more personal, which is what I prefer to do.

Call your local NICU or its support group and ask what you can do to make this whole thing suck less. Small things can make prematurity suck less. For example, my mother, my aunt and I make blankets and hats for the babies. There are dozens and dozens of babies that have worn my aunt's tiny "wee caps" and many who have been warmed by one of my mom's blankets and even though my blankets are far from "perfect" they are made with love. Some people make isolette covers, some people donate disposable cameras for parents to leave at the baby's bedside (yes we do take photos of our babies in the NICU), other folks donate gifts cards for coffee or gasoline to be given to those in need in the NICU. Others donate story books to the NICU (yes we read to our babies the same as you would at home). If you are feeling really generous, ask if you can send over bagels and coffee for a Sunday brunch for the parents and nurses (they get hungry too). Not all parents in the NICU can afford NICU clothes for their baby, so think about donating some NICU shirts or preemie clothes to your local NICU.

Even if you can't prevent premature births, you can make prematurity suck less for the parents and the babies who are in the NICU right in your hometown.

So this November, let's see if we can all make prematurity suck less.