Monday, December 3, 2018

International Day of Disabilities

In honor of the International Day of Disabilities, allow me to repost a three-year-old blog. I've gotten bigger but the situation has pretty much remained the same!

See here for original.


In the driver's seat of inclusion!
Not even on Twitter, yet so many followers!
Happy to be... and Happy Day to Me!

I randomly came across the fact that yesterday Dec. 3, was International Day of Persons with Disabilities. Who knew there even was such a day? I did not.

I prefer to say that I am a person with varying abilities, not the least of which are my keen writing skills. Nevertheless, I have a title to put on my ID card and it entitles me to various things, some clear, many not and most that I need to go out and demand.

So on this auspicious occasion, I would like to point out what some of those key rights are, many of which overlap with the internationally recognized rights of babies, known to parents worldwide:
  • I have the right to drive my parents crazy
  • I have the right to harass my younger brother and sister
  • I have the right to throw fits and have meltdowns, in public
  • I have the right to attend a "regular" school
  • I have the right to receive therapies at school
  • I have the right to get therapies through my insurance company
Kids who play together advance important causes together (such as inclusion)!

But, in parallel response to those bullet points:
  • No buts, it's the God-given right of every child and we know how to use our rights!
  • My brother and sister are getting old enough to harass me back!
  • No buts, again, its our God-given nature and the Murphy's Law of Babies
  • I cannot attend school without an aide and the aide only gets 30 hours/week to be with me
  • The city cannot find/hire/pay one therapist willing to come to my school for just me for one hour a week
  • My insurance company doesn't cooperate with the premiere place where I am receiving my therapies rather offers me subpar therapists, many of whom have zero experience with T21, at their own place (*one said session ended in utter disaster)
And so my parents have their own newly bestowed set of "rights":
  • My parents have the "right" to spend all their spare time embroiled in wars with governmental and insurance company bureaucracy  
  • My parents have the "right" to spend the rest of their spare time quelling entanglements between all of us siblings
  • My parents have the "right" to take time off of work to bring me to my therapies
  • My parents have the "right" to pick me up early from school every day because we have no aide for the after-school program
  • My parents have the "right" and responsibility to maintain their sanity despite all of the above
BFFs

Perhaps those aren't rights, rather consequences of a broken system. Our famous biblical saying is "faith without works is dead." Likewise rights without the infrastructure to make them into reality are useless.

Days such as International Day of Persons with Disabilities, like the concept of inclusion, are nice in theory. But without a widespread awareness of the challenges facing people with disabilities - and I'm not talking about the mental and physical challenges - change is a long way down the road. Let's hope that this day will bring more awareness so that more rights can be readily meted out. And meted out with a cheerful heart rather than a long and exhausting war every time!

I have lots of rights, but making them a reality is still a long way off. In the meantime, I make the most of the rights that I can execute on my own such as melting down and being cute.

Me and my shadow!
This is how Talia and I roll at school
I have a God-given right to be CUTE

Wednesday, October 31, 2018

The Amazing Duck with Down syndrome

First Grade.

First Grade.

We are in the last moments of Down Syndrome Awareness Month, October 2018, and so it is with no small sense of excitement that I announce that the "awareness" of Trisomy 21 has spread to the animal kingdom!

It was on this day, Oct. 31, 2018, when the rest of the family learned that one of Lucas's many stuffed animals has Down syndrome.

Lucas matter of factly revealed this bit of information in the midst of one of his extremely lengthy soliloquies, the bane of the overly-verbal (as opposed to non-verbal) child. Upon hearing the news, mommy felt a mess of emotions ranging from amazement and elation to tears stinging the backs of her eyelids. But she tried to maintain her composure and meet this revelation with the same delivery in which it was given. Just the facts.

In fact, Teet has always had DS, but Lucas, who is 6, only just recently became aware of the diagnosis. Mommy asked how he didn't know about this before. The reason - because Teet, who is a duck (or a chicken, no one is quite sure which), knows how to do "all the stuff like his other toys."

Mommy went into full tear suppression mode and delicately probed further.

How did you discover that Teet has DS? Lucas said it was during a play session with his toys' doctor, another toy, and the doctor told him that Teet was a Down syndrome baby. Yay! Lucas said, a Down syndrome baby!

Lucas, my dear younger brother, is a quick learner of lessons he doesn't even know he is learning. Amazingly, despite our huge differences, we are largely the same to him. At least that is Lucas's perception, the one that he was inadvertently raised with.

Raia and I with mommy, sharing the same
privilege of attending a late-night, sensory overload, outdoor concert!

But Lucas wasn't done processing this information. He raised some other questions: who is Daniel going to marry when he grows up? It is going to be harder for him to find a match, Lucas surmised. And will he marry someone with Down syndrome, or not? Of course, we also don't know who Lucas or Raia will marry, Lucas readily admitted.

So really, all our fates are uncertain which makes us more ... the same!

Even though apparently he knew about Teet's "condition" for awhile, Lucas only just mentioned it, because it just wasn't a big deal. But it goes to show that he has a healthy and much needed approach to "different" and to life in general, one that should be spread to all corners of the earth, all year long, not only during awareness month.

And with this diagnosis of Teet, the duck/chicken who has Down syndrome, mommy and daddy got a bit more oxygen to their tired souls and, for a moment, could say that perhaps their constant battle for "inclusion" is worth the effort.

My paisans and I in Rome at Locanda dei Girasole.
Read more about that amazing locale here.



Wednesday, August 8, 2018

Baby training with my cousins!

Cousin reunion, plus meeting Naomi for the first time!

Hello, little cousin. I have much to teach you.

My mission in America is going very well. As part of being a baby-turned-little kid, my job in life is to train up other babies in the ways they should go. I have done exceptional work with my siblings creating a very rowdy and adventurous brood that brings a tornado of destruction wherever we go. Roman Empire? Well, you know what happened there!

And now, here in the metropolis of New York,  I've started working with my cousin Theo, who is 2.5 years old. I'm proud to report that within one week of sleepovers in the same room, I trained him to abandon his excellent sleeping habits (12 hours a night, never awaking before 7) and instead start stirring at 5 a.m. never to return to sleep again for the day!

In fact, he earned his certificate of excellence when one morning, rather than me waking him up, Theo awoke first before any of us, at 5:30, and immediately went scampering downstairs to bother Mimi and GongGong!

Another part of my training course has been to have Theo forgo his rather consistent and solid afternoon nap. That was a no-brainer. When you're running with the big boys, you don't nap. You run.

All. Day. Long.

Theo has done things he has never before known possible - and all thanks to us who are teaching him the ways of babies. As he is an oldest child like myself, I was concerned that his training needed a boost since he is not surrounded by older and wiser children who can pass along their wisdom. I need not have worried, he is a quick learner.

His training has been splendid. In addition to his new zombie state of sleeplessness, one day his mommy, Zemmy (Zia Em), found him sitting on the dining room table while trying to wrest the Legos from Lucas. He was spotted there only after knocking over a cup of coffee.

In another session, Raia taught him to smash all of the clay colors together into one monotone mass.

Theodorable has also learned to rip off his shoes and go barefoot at many inconvenient times and locations as we are wont to do. For example, when we arrive at Nanni's, we instantly remove shoes immediately and go running through the senior living space thus much to the horror of the residents and workers alike.

In this photo, we taught Theo how not to pose for pictures
thereby ruining an all-the great grandchildren photo!

Showing off and barefoot

The shirt says it all

We also taught Theo that it is a God-given right for
a child to steer Nanni's wheelchair, as pictured
Theo has learned the ways of iPads as well: One, to take any iPad you see and just use it; And two, to walk up to anyone with an iPad and touch the screen thereby changing everything and causing untold angst.

Most importantly, we have instilled in Theo a sudden and very high sense of independence and unwarranted adulthood. We as children run the world, and we should act like it.

This is what babies do. We pass down our traditions and laws to the up and coming generation. Hence centuries worth of sleeplessness and parental anxiety have roiled mankind.

Or it could be that he's 2 and that our training happens to coincides with this general phase of life. Basically we become uncontrollable wrecking balls and bring many character-building challenges into the lives of our parents. Mommy was slightly apologetic about that to Zemmy, but then again, misery craves company.

And thus our days have gone during a week of raucous reunion activities.

We will work on Naomi next year. 

Monday, July 23, 2018

Like the Roman conquerors of yore, The Baby Blogs takes on Rome - and wins!

Admiring the fountain outside the Pantheon - while threatening to jump in
Apparently parents can get the upper hand over their kids in a devious effort to exact a tedious and demanding form of revenge. This one involved walking around all of Rome for eight hours in the torturously blazing sun to see old stuff with millions of other people. And then, after a brief respite, these parents corral these same children out for dinner, walking - again - to find a ristorante where eating was the last thing on the kids' agenda.

In fact, as we dragged behind while they pushed through to see new things and new places and new menu items, occasionally my parents exchanged sinister smiles about how they are finally getting revenge on their own offspring for waking them up at 5 o'clock every morning of their lives after not sleeping through the night and for preventing sane mealtimes and hot coffee. Oh yes, they forced us to be on their schedule to see and to eat all sorts of things we could care less about.

Can you see the joy on our faces as we eat, again, at an Italian ristorante?

Forced smile and feeding at a late night dinner

But beware parents. In the end, the parents still lose. Meltdowns are fast and furious at dinner tables especially when all three children go into catatonic states as their bodies literally shut down. The meltdowns are powered by fists slamming on the table, challenged fine motor skills when handling glassware and scathing words such as:

"I HATE this day. I hate EVERYthing."

"When are we going home??!!"

"No!"

Even promises of dessert followed by threats to withhold dessert do no get through to the beleaguered children.

Gelato and its aftermath

Trevi Fountain! Our wish? To not come back any time soon!

And so, the parents, who endeavored to eat their way through Rome, succumb to the pressure and pick the first restaurant they find, rather than the one recommended. They rush through ordering, not having read the entire menu and surely having meal regrets. And they eat fast, if at all, as they attempt to feed us, with a pit of pressure in their stomach trying to prevent us from creating a "scene" at the ristorante. I myself took not one bite of a most delicate lasagna adorned with both beciamele and bolognese sauces. We rushed to our apartment in Trastevere and were in bed at 11 p.m. -- hours past our usual bedtime.

And the next day, we awoke promptly at 6 o'clock in the morning and rallied our parents to attend to our needs immediately.

Thus my parents found themselves in this exact scenario yesterday on a cloudless and searing day in the ancient Roman Empire.

Random beautiful fountain on random
beautiful cobblestone alley

And the winner here is... moi!
Mommy and daddy often ask themselves: Are we brave or are we stupid? This is a toss up that only history will determine. Although the odds are leaning heavily toward stupid for taking three young kids to ancient Rome.

Because who takes three young children, all of them hyperactive and with some sort of special needs, to a beast of a city in the hot Mediterranean summer? To a city where the streets and their drivers are unforgiving? To a place that attracts millions of tourists a day, causing lines of two hours apiece at the most famous monuments?

But in between the battle of the wills, we did see some amazing sites and even ate at the most special of restaurants. One mission, during our journey to Rome, involved visiting Locanda dei Girasole. This ristorante is staffed by adults with T21, or sindrome di Down, in Italiano.








The establishment, and its purpose to employ capable people who otherwise wouldn't have had a shot, was very special. And of course, the food was delicioso. 

But even this could not be thoroughly enjoyed or appreciated when the meltdowns ensued. Here is a pictorial of the aftermath of another late night out in Rome:





Nevertheless, despite these minor (er hmm) glitches, we are basking in the glory of Rome. We are eating the best pastas we've ever had (at least my parents are eating it), ticking off the list of Roman specialities of Carbonara, Amatriciana, Cacio e Pepe. We are swooning to the melodic Italian language. And we are creating great memories through photos that don't always portray the angst of the moment.

And all the while, mommy and daddy are plotting their inevitable and desired return. Without children.


Thursday, June 28, 2018

And Graduation Kudos go to ... The Parents!

Lucas graduation!
It's the last week of school and congratulations are due all around! No matter what age or grade we are finishing up, each and every one of us has somehow had a rite-of-passage graduation party at school totally stripping any meaning of actual accomplishments and rites of passage.

Raia gymnastics "graduation/open house/
not really graduation"

Raia pre-K graduation! She was the least interested

Me! (the one in blue) My ballet recital

After ballet recital lavishing sunflowers on my instructor

To further erode any significance of our accomplishments, each and every extra-curricular activity has or will host its own end-of-year party. Of course! Even if it was a mere "open lesson" because the participants were too young to put on a show, it was yet another appointment for parents to put on their Calendar of Guilt to attend or not be able to attend due to scheduling conflicts.

And some of them, such as my ballet recital and my kindergarten graduation, fell on the same evening! But these were at different times hence making it impossible for my parents to skip one, just making it necessary for them to CRAM IN MORE to a condensed and stressed amount of time (including dropping off the siblings with a babysitter since they are specifically banished from their brother or sister's party ... a suggestion ignored by 99 percent of most parents. Not mine.).

Wardrobe change! Here's Dad and Talia transforming me from
Dancer Extraordinaire to Graduate

I graduated! Me and friend Yacout
Now for some complicated Parent Math.

Problem: How many hours will you spend on your children's end-of-year events this month?

Solution: First, answer how many children you have. That is equal to how many school end-of-the-year parties you have. Then, consider how many extra curricular activities your kids attend (Ballet? Judo? Soccer? Special needs after-school program? Etc.?). Multiply that number by 1,000. Add in time shopping for the refreshments assigned to you for each party plus the end-of-year gifts for teachers, instructors, personal aides, afternoon staff and the one-on-one tutor that comes weekly to meet with your child.

Truth: Your entire month of June will consist of driving children to their parties. You will spend an amount equal to the sum of children you have birthed times events per child SQUARED and then times infinity. You will take an indefinite leave of absence (mentally if not actually) from your job in order to facilitate your children's schedules. You will spend (multiply by number of children ie TRIPLE in our case) your monthly average on gas or bus fare. You will be subjected to the torture methods used on prisoners of war employing shoddy sound systems and shrill and repetitive children's music. You will assuredly run out of storage on your "smartphone." And your sleep loss will experience subtraction and division in proportion to the multiplication and addition of events.

Suddenly your children have attained the status and schedule of POTUS and you have become their personal assistant.

But congratulations! Your children has graduated to, er, ... kindergarten! WOW!!!

Or in my case, and Lucas's, FIRST GRADE!

At this point, the parents don't care. They are just praying for it all to end so they can find a semblance of routine again ... until the homework begins!

So on this blog, despite the fact that is is written by and for babies, we salute the Parents of the World who have endured this last month and lived to tell the tale.

Here's me with my mortarboard... and my
beloved personal assistants, Merav and Yasmin 
Yasmin was with me every step of
the way this year


Wednesday, February 28, 2018

A living stone of Jerusalem's Armenian Quarter

Kevork "George" Jansezian, aka Dede
Millions of tourists and pilgrims have flocked to Jerusalem's Old City for centuries to see all the historic, religiously significant and archaeologically dazzling sites it contains. This one tiny swath of earth has, and still draws, attention from all around the world.

And yet for me and my siblings, only two landmarks compelled us to flock to the Old City every weekend: Nene and Dede.

But now, one of those historic landmarks is no longer. After a three-week stay in a hospital Dede has died. He passed away in his sleep on Feb. 27, 2018.

Kevork “George” Jansezian — who was born in British Mandate Palestine, raised in Jordan and died in the State of Israel, all having never left the Old City — died at 82 years old. His parents escaped Turkey during the Armenian Genocide and sought refuge in Jerusalem.

Kevork spoke at least four languages including Armenian, Arabic, Turkish and English. He was orphaned at 5 years old, the youngest of three siblings all of whom preceded him in leaving Jerusalem and this world. After their parents died, the siblings were taken in by the Armenian Patriarch at the time and were raised in and by the close-knit community. Kevork is the only one who remained in the city till the end, while his siblings eventually moved to Dubai and Australia.

The orb of Kevork's existence encompassed a half-kilometer radius. He lived in the Old City, his home since birth, specifically the Armenian Quarter, the smallest of all sections in the Old City in both size and population. Governments came and went, wars raged, but Kevork remained, a living stone in the walls, a rock of the Armenian Quarter and in one of the two social clubs at the Armenian convent.

He was a man true to his word, never fake, extremely friendly and well liked. He was strong in character. Kevork was a photographer for most of his professional life. Later he created designs for ceramics, intricate works comprised of minuscule squares that made up Jerusalem’s walls and colorful floral patterns.

But, of course, his best legacy has to be his son, my dad, Tony.

Now this is truly amazing and rare and speaks of a life worthy of novels and film, but Dede would've been the last person to take note of any of this. Kevork was content with his own status quo and the occasional night out with the guys in Bethlehem.

And us, his grandchildren.

Like warriors of yore, we charged through Jaffa Gate every Saturday and made our way around to Zion Gate stopping just as we came to the height across the massive valley from the Mount of Olives. Right there is our Mecca - Nene and Dede's souvenir shop.

"Hokis," (my soul), Dede's eyes would light up as we rounded the bend and he would scoop us up for a big hug, defying his aching back. We would twirl around the ceramic Armenian pottery, the Hebron glass and other delicate items that children are prone to destroy. Then we would dart out of the shop threatening to jump in front of passing traffic as children are also wont to do. It's amazing Dede didn't die earlier of the heart attacks we caused.

This is our Jerusalem. This is our Old City. The ancient sites are to us as the Statue of Liberty is to mommy who grew up in New York: Taken For Granted.

We have more important things to attend to there. Grandparents.

Grandparents always trump yawning historic sites and churches. Nene and Dede would welcome us and then usher us to a feast prepared at their apartment, which faces the very mount on which they say Jesus will return. From there, he wept for Jerusalem.

Today, we weep for this city. Today one of its Living Stones will be buried on Mount Zion, a memorial to the dwindling but enduring Armenian community. Our beloved grandfather.

Dede and I celebrating Christmas 2012

Services will take place Wednesday, Feb. 28 at Saint James Cathedral in the Armenian convent at 4:00 followed by a procession to the Armenian cemetery outside Zion Gate and concluding with coffee at the club. 

Our last moments with Dede these past three weeks:


At Hadassah Ein Karem three weeks ago

No hospital bed will keep me from you!

A few more weeks and we would've run this hospital

Ushering Dede to an MRI

Passing time while waiting for the MRI

Dispensing drugs, just your every day child activity

Saying goodbye at the hospice Monday night