Practicing birthday inclusion; inspiring world peace

Happy peace day to the world!
Here are my worlds colliding...

It’s not that I try to be inclusive, it’s just who I am. So when it came to the auspicious occasion of my 10th birthday, the celebration inadvertently became the party of all birthday parties.

Let’s be real, Thursday was a historic day, bringing together unlikely sides to sign a groundbreaking peace agreement. But that was coming on the heels of my pwn party where my worlds collided with aplomb …and fun. A true enactment of “the table of brotherhood.” 

Speaking of brotherhood, Lucas is always
hard-pressed to not be the center of attention

And it all started with me celebrating my first in-country birthday since I was 1. We decided to coincide the timing and location of the party with a farewell to my group leaders at Shalva. Thanks to coronavirus, Shalva was suddenly shut down two weeks ago and we never had a proper group goodbye.

My guest list expanded from the Shalva girls, who fearlessly led our group this disjointed year, to include other volunteers from Shalva, some of my friends in our group and then expanded exponentially with an invitation to my second grade (going on third) at school.

We pulled this off in less than 24 hours. Mommy and Daddy worried about things like kosher and gluten-free food. We threw some picnic blankets on the grass at Shalva’s inclusive park (in keeping with the theme of my party). 

We broke bread together. Or cake.

No I'm not smoking a peace pipe

Bringing together people from different backgrounds shouldn’t be that hard. Here we were —kids with and without extra chromosomes; Jews, Muslims, Christians and even atheists — singing Happy Birthday in Hebrew and Arabic to a Christian and an Orthodox Jew respectively.

My Shalva leaders cried buckets of tears watching me interact with the neuro-typical friends from school while the parents gazed in amazement at these teenagers who have dedicated years of their lives to volunteer with kids like me. It was a mutual admiration society.

And then, minutes later, clearly taking a queue from my playbook, Pres. Donald Trump announced a historic peace treaty, the first between Israel and a Muslim state in a quarter of a decade!

I am so proud and elated that my friends and I were the inspiration for world peace! 

Leaders of the world, next time you’re looking for a peace treaty, you might want to call us.

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Guest blog: Mom embarrasses me with open letter on my 10th birthday

Celebrating my successful completion
of one decade!

I have allowed my mom to embarrass me with an open letter to Yours Truly on my 10th birthday. Sigh.

Dear Daniel,

For your tenth birthday I would love to give you the gift of speech. I have no power to do this, of course, but I wish it so hard. Speech, speaking, communicating in a language that we understand … that would be my first and foremost gift for you.

I am fully aware of my own frustration that you cannot speak. That you cannot offer information or answer much more than yes-or-no questions. That I don’t know your favorite color or what you want for your birthday. When you are feeling sick or what foods you are craving.

What I am less aware of is the depth of your frustration. Because you cannot express that. I can only imagine that your angst far surpasses mine. It must be so aggravating that supposedly intelligent adults have no idea what you are saying. That we fail to grasp your basic needs and requests. And that we frequently guess wrong.

I’ve never heard you utter the words, “Can I invite so-and-so over for a playdate?” “I’m hungry.” “I want … I love… I hate…” I do hear those statements ad infinitum from your siblings, plus their constant squabbling and their millions of thoughts that spill out in a childlike stream of consciousness.

The Three... take your pick

We are supportive of each other ...
when we are not arguing

One of those moments when my parents wish I could
have told them how I felt, since I looked pretty mad!

The truth is we do feel you. We know your moods and can sense when a meltdown is coming on. We know you in a different way than we know your siblings.

Speaking would probably be more a gift for me than for you. If you spoke, life would be much easier for me, your father, sibling, grandparents, teachers. We would be aware of what you know, whether you don’t understand and what you flat out ignore because you couldn’t care less.

Every year, all week leading up to your birthday, I don’t rejoice — I panic. I panic because you are another year older and yet you still do not speak. The therapists always assured us, “It will come!” “Give it time.” One set of experts decried learning sign language when you were young saying it would encourage you to be “lazy” and not talk. Another set of experts wanted to focus on picture cards and communication boards, which you hated.

If I had trusted that tried and true, nagging maternal instinct, I would have pressed the issue. But who was I to argue with professionals who were nonplussed by your lack of speech at age 3, then 4, 5 and 6? Anyway, we had enough to worry about, from open heart surgeries to advocating for inclusion at school. I rested content that “speech would come.” Yet as you grew to understand two languages fluently, you could barely imitate their sounds and construct words.

The experts eventually became concerned and added a diagnosis: Apraxia. Then the speech people argued about whether it was apraxia or dyspraxia. They said It would take work, repetition and everything we had ever done, times the thousands that we would never be eligible for, with the time we would never have enough of in a given week.

Thanks to the “experts,” I never considered that perhaps you would never actually be able to speak — and how we would deal with that as a family. Lately, I’ve started to consider that prospect.

So this year, as I was partaking in my annual pleadings before your birthday (please let him speak, please let him speak), I stopped myself.

For your tenth birthday, instead of wishing that you will speak — which I cannot make happen anyway — I wish really hard that I will find new ways to listen. I need to find new ways to hear you without speech. New avenues of communication.

My eyes must watch for subtle cues, rather than depend on hearing the raw exhaustion in a voice that indicates an oncoming meltdown. My mind must decipher between the various yelps of joy, fury, aggravation, surprise — all of which sounds the same.

My heart must listen louder than my ears.

Listening with one’s heart, for a still small voice, rather than an earthquake, takes fine tuning, patience, more attention and discipline. I’ve spent 10 years failing at this.

Do I want you to speak? Hell yes. Will it change my life? Certainly, and yours as well. Can I be content if you never speak? Honestly, I have little choice but to cope with that, but I’m not sure I’ll ever be “content.”

What I should do is make a conscious effort to listen to your current communication and adapt to it, rather than always try to fix it.

And perhaps (a big maybe!!), if I rest from trying to always fix things, I’ll be quiet enough to learn something new.

I doubt I will rest entirely, because mothers (parents) never do. But here’s to a new decade and a new direction in life. Happy birthday, Daniel!

We find plenty of ways to communicate

Even without words, I get my message across!

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Corona Statistics you don't see on the News!

One of several daily Zoom calls for schooling and contact with long-lost friends

Daily average statistics of our home quarantine 

Hours parsing WhatsApps groups to figure out daily school assignments: 3

Daily homeschooling assignments completed: .4 out of 12 (with luck)

Pencils gone missing or broken: 10 (yes, per day)

Zoom calls (for children): 4

Sheets of paper lost to doodling, drawing and "art" work: 36

Meals consumed by three children: 65

Food micro-particles swept off the floor: 1.57 million

Hours spent dish washing: 2

Furniture items damaged to varying degrees: 1

Hours spent putting toys away again: 4

Minutes spent in fresh air outside: 19

Sibling fights broken up: 85

Cases of coronavirus at home: 0

Cases of high blood pressure: 2

During time out in our 100-meter perimeter.
The forced labor includes Lucas reading to his non-attentive audience
and the rest of us decorating the forlorn path less traveled these days.

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Corona Fallout: 'Home Sheltering' and Remote 'Learning'

Me outside during yard time

In the irony of what has come to be known as "home sheltering," the home itself has found itself in a situation that is the exact opposite of shelter since everything inside it - from food to furniture - has become an endangered species.

As we hunker down for the interminable and indefinite future within the confines of our apartment, we fear all of our magic markers will run dry, that the entire stuffing will come out of that shiny new rip in our sofa, that the coils in daddy and mommy's bed will lose their spring due to our jumping and that our academic progress will be stunted beyond repair thanks to our new teachers (our parents, bless their hearts). My glasses, which I broke in a dazzling act right before the corona-shutdown, remain unfixed and unused. Our school shirts have been retired. And we drift casually from nighttime to daytime pajamas at some point in a 24-hour period.

If everything else fails in homeschooling... 

...at least we will be able to use our heads for something! 

Homeschool sports - on Zoom

Homeschool showoff 

Perhaps our fears are misplaced and we should be more concerned about the coronavirus seeping through our four walls. But for now we are too busy to add fear to our checklist. Hence, fewer blogs. On a positive note, maybe we can learn how to use the damaged wooden furniture to make paper. Now that would be what I call homeschooling.

When parks just won't do... because they are off limits! Boredom is the new mother of invention.

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“Remote Learning” Day 2

Schools are out. And so are we!

Israeli schools are closed and millions of students are supposed to be learning from home in an effort to curb the spread of the contagious coronavirus. This is what we are doing instead. See photo ☝🏼

The Hebrew language uses certain abbreviations for some phrases such as “halat” which stands for hofesh le’lo teshlum, meaning vacation without pay. We’ve just developed a new phrase as evidenced by these photos: halal - hofesh le’lo limudim - vacation without learning!

While many adults are currently getting sent off to "unpaid vacations," the children are sent off to "vacation" and, if we learned anything in school, there is no formal "learning" on vacation!

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Corona Update #3: “Remote Learning”

"Remote learning"
Right?

It is Day 1 of Five Weeks in the Wilderness of No School. You can see how this is going. Send the kids out on their own to learn about nature ... or something ... and monitor from a distance. With a cup of coffee.

Counting by cookies! Gotta love "home schooling"

No time for blogging, mommy has to try to work after I go to bed. Can you hear us kids laughing from across the ocean, desert, home quarantine ...  or whatever has come between us?

As you can see, the bribery attempts have already deteriorated into home-baked cookies. M&D are in trouble! 

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Corona Update #2: Home Schooling 101

All alone in the world. The Holy Land under
lockdown and an empty Old City in Jerusalem.

It's official: Schools are closed for an eternal five weeks, up till and through the Passover and Easter break. Five weeks. At least. Thank you, #Coronavacation!

And at the same time, there shall be nothing to do with all this free time. In light of #Coronapanicdemic, everything in the country from restaurants to amusement parks to gyms and malls have been shut down except for supermarkets. What will I do without Shalva and my girlfriends, Talia, Adi and Tehila? And Epraim and Aharon? What will I do without school, without Yasmin, Haim and Haya, Mustafa, Dror and Eyal? It will be lonely and jarring having no routine and not seeing my friends. I will also not be getting therapy and my siblings will probably find out soon that their after-school activities are canceled too.

Supposedly the Ministry of Education has a digitized system in place for home learning, but mommy and daddy can already see where this is going. We've already destroyed the apartment several times over, I personally broke the cable box (fixed now), we've eaten 80 times a day (so much for stockpiling) and we've used every available scrap paper for "arts and crafts" (poor trees).

And that was just the weekend! We haven't even embarked upon our five-week journey in the wilderness.

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The Purim Nightmare: The Most ^&^#% Time of the Year for Kids with SN (and their parents)

Conquering Purim one party and costume-day at a time.
I do get a little better each year.

These kids have no problems with Purim.
In fact, they look forward to it.

It's almost over. I'm holding my breath for next week when the confetti settles and we can all put on regular clothes and maintain a regular schedule again (until all school are closed down for Corona!).

Let me paint a picture of one segment of the population: Communication issues, sensory processing challenges, anxiety, behavioral foibles, ADD/ADHD, panic attacks, apraxia/dispraxia, autism, Down syndrome, the list goes on.

Stack that list next to the adjectives of Purim: Loud music, itchy costumes, dress-up days at school, different schedules at school, days off from school, noisemakers, costumes, parties and gatherings, CANDY and lots of it, the list goes on.

This is a cocktail of disaster for children with challenges.

Purim is a time in Israel that is sometimes compared to Halloween because we dress up in costumes and get candy. But the comparison ends there.

Halloween is a one-day affair. Purim, on the contrary, has taken on a week-long aura of utter madness, and even involves, in great Jewish tradition, drinking and making merriment even until till one falls on his or her face in a drunken stupor, if need be!

The child-friendly version doesn't involve alcohol, but instead there are many "happenings" which are essentially parties with loud music. And to exacerbate the entire season, the main Purim prop is called a noisemaker.

We also have a weekly schedule of weird ways to dress for school such as hat day (as if I ever put anything on my head); pajama day (contrary to what I've learned that we change from pajamas to clothes otherwise I should not be going to school), backwards clothes day (never in my pedantic book should that be allowed, not to mention having a shirt tag itching my throat), and, ultimately, all of these are merely appetizers leading up to the main affair: costume day.

Unfortunately for our school, costume day was postponed due to coronavirus so we still have that ahead of us.

We also give and receive gifts, traditionally comprised of sugar-filled, food-dyed candies and other such items. This brings to utter ruin any ounce of stable brain function and placid behavior that was left.

The increase of sugar, plus the silliness of the week creates a party atmosphere which disrupts our normal schedule.  I am a mess if not on a schedule. Look, I already find it hard to function on "normal" let alone throw some madness into the mix.

All around the world of special needs there are meltdowns, anxiety attacks and bouts of stimming. On a Facebook page for parents of special needs, the repeated cries are: "Purim sucks," "Purim is a disaster,""I hate Purim!"

Many SN parents strategize Purim months in advance. Some solutions include: Dressing their kids in character T-shirts instead of an actual costume; wearing costumes all year round to ease Purim day; refusing invitations to certain/most events, dinners and friends' houses knowing an inevitable meltdown will cause the entire family to flee in the middle of an event; and lastly, investing in some good earplugs.

These parents are drinking alcohol just to sober up, not to "make merry."

This year, the seasonal drink of choice for Purim is:

 Happy holidays!

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Corona update #1: O Little Town/Street of Bethlehem

Raia/Jasmine of Arabia with Tiger Rajah
on Bethlehem ROAD

Living in Coronaviruspanic land has been interesting to say the least, and third elections be darned, there is no other news in all of Israel. Forget prime minister, the Ministry of Health is in the running to be the Messiah as it continues to institute restrictions designed to save all citizens.

One particular edict that came out last week rocked our little world: People that live in or have been to Bethlehem in the last two weeks have been ordered to quarantine themselves. 

That is like saying all of Queens should be quarantined immediately including anyone who landed at an airport and took public transportation after their flight over the past two weeks.

Okay, maybe a smaller neighborhood than the vast Queens county, but still. You get the picture.

The announcement about Bethlehem affected a large percentage of people at our school, students and staff alike. Our school had been flying under the radar being the only public school still having classes and not on the weeklong break that is Purim. I'm not sure if we were being punished for learning, but the Ministry of Education teamed up with the Min of Health and they swept in to find out if Coronamaniavirus has breached the seal of our school's doors.

One by one, the teachers asked each student whether they have been to Bethlehem in the last few days. Raia, who is in first grade, didn't think long about this trick question.

"Yes," she emphatically responded!

That sent the school into a tizzy and prompted an immediate phone call from her teacher who interrogated mommy as to our whereabouts in the last few weeks.

“No we haven’t been there in the past two weeks,” mommy was perplexed. “I don’t know why Raia would say that.”

Was Raia intentionally trying to get our family quarantined??? Then a lightbulb went on for dad.

“We live on Bethlehem Road!”

Sure enough, the source of the confusion. Well at least she knows her address.

Nevertheless, it was all enough for MOH/MOE to decide to shutter the school. Parents, who were deep into their workdays around the country at the plum hour of 11 a.m., received an alarming and urgent message: ALL STUDIES HAVE CEASED AS OF THIS MOMENT. COME PICK UP YOUR CHILDREN IMMEDIATELY!

Fake news, mommy scoffed and continued writing. But as more messages poured in, they realized it was actual. It was actual that parents had to come pick up us kids... but there was not one case of coronavirus at our school (thank God). Nevertheless, there was no need to continue learning while the rest of the city gathered at large events and infected one another anyway.

We banked an extra day and a half of vacation! Go kids!

Continue to check back in for all of the important Coronavirus updates impacting the lives of children worldwide.

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The annual field trip and the infamous 'snack' obsession

Don't be fooled outdoorsy activity:
The main takeaway was much less lofty

On our annual field trip!

We had a great time, but ...

...note the real star of the show: The "Hatif"

Here in Israel, all school year builds up to the "annual field trip." The excitement is palpable as the day draws near and school children are all atwitter about the big day - or actually a specific aspect of the day.

Mommy was excited to find out where the tour would be so, one by one, she asked us about the tiyul shnati (annual field trip).

Lucas: "The teachers told us we can bring two hatifim (snacks)."

Mommy: "Sure," she shook her head in confusion. "But what did they say about the place you are going?"

Lucas: "I don't remember."

Well, he is a boy. Mommy moved on to Raia for more information and asked about the field trip.

Raia: "Maya H. is going to share her hatif with me. I'm going to share one of my hatifim with Maya B. And I'm going to sit with Miral on the bus and we will share our hatifim!"

And on she continued about who was going to share what snack and with whom and how many she could bring. Still no information on the actual trip.

Yes, every year around the annual field trip or any other shorter field trip to a museum or the zoo, hatif obsession sets in.

Hatif is very simply translated as "snack," but on the day of the annual field trip, it absorbs an ethereal, galactic meaning that mesmerizes children all across the land. On these days, hatif means: "Any food item previously banned that shall be temporarily allowed for a specific amount of time."

True translation: Junk food.

More specifically, candy, chocolate, a bag of chips and other such junk that is not necessarily allowed at school and possibly also at home. Hence, the children are agog over the lifted ban and look forward to those few hours of bliss. They think it means that their parents are obligated to comply with the new regulation.

The actual field trip was a hike on the outskirts of Jerusalem at a nature trail currently arrayed with budding spring flowers and the puffy white balls of almond blossoms adorning trees like snow. We had beautiful weather and I endeared myself to one of the guides.

Mommy wondered if we noticed any of this because, almond blossoms be dammed, the main report from the field trip was about the hatifim. 

"So-and-so brought this hatif." "So-and-so dropped his hatif and cried." "So-and-so shared her hatif but So-and-so did not share her hatif."

And so on.

Mommy tried to outsmart us and found spelt pretzels with sesame seeds on sale and she bought the big bags, knowing that sharing is part of the obsession. The carob-filled spelt wafers were also on sale so they also went into our backpacks. We were oblivious to the fact that these were not white flour and chocolate and so we felt adequately illegal. The teachers recommended packing an extra lunch for us as well, but mommy has learned her lesson by now -- there would be so much snacking that we would not eat real food. And truly, one sandwich was more than sufficient and not even fully consumed.

With the field trip behind us, the ban on hatifim has been reinstated - at least until Purim (next week) when the entire holiday revolves around all things junk food and costumes.

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The Beginning of the End ... of the school year!

Celebrating the end of school as we know it!

The spirit of Purim is in the air. People all around Israel are starting to think about God used Esther and her uncle Mordecai to save an entire race from destruction.

Oh you didn't think I was serious did you? No, this is the season of utter and rampant silliness. My parents received a school schedule outlining a week of random dress up days at school including animal day, hat day and pajama day among them, and all those just appetizers until we get to the main course -- the day we finally don our real Purim costumes.

Nothing spiritual is going on, not even the gift packages we are making full of candy and other attention-deficit enhancing sweets.

And, if you are a parent, you are sensing the beginning of the end.

Yes, the school year, which ends on June 30 every year, is as good as over as this week of psychotic activities commences. After Purim, which is like Greek Week all over Israeli public schools in both its length and raucousness, we have just a few days until Passover break starts.

Passover break resembles the Israelites' exodus from Egypt (which is a symbolic start) and then the subsequent 40 years in the wilderness. The Lord mandated that Passover be a weeklong observance but the Israeli schools have made it closer to a month.

The prospect of so many vacation days adds up to a sense of excitement permeating the air if you are a kid in public school. You can see light at the end of the tunnel, the end of consistent learning is so close we can taste it. And after all these long months of learning since Hanukkah in December we totally need a break already!

And heck, while we are at it, let's take today off for another Election Day! It's only our third election in less than a year, giving us an extra three days off from school that help us get through our academic year. So today we are pregaming our next two months of vacation with a day off today as well.

Life is good for kids who need a day off while parents are wondering how to work for a living.

Celebrating a day off before the days/weeks/months
of vacation!

Tis the season to serve up silliness on a platter

And who better to practice our penchant for drama, partying
and hilarity than with our friend Debi!

Stretching the limits of insanity with vacation days!

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Bringing true awareness to Down syndrome, as only I can

Making you aware of me

Every October is Down syndrome awareness month and, every year, amazing articles are published by parents or others who have a loved one with DS. They detail the challenges, the joys, the milestones, the first time they heard the diagnosis and other aspects of life with Trisomy 21 — all inspirational and worth reading. I recommend searching the Internet to find a few of these moving stories.

We all (especially my parents!) love reading the success stories and the warm and encouraging testimonials of those who have overcome obstacles and achieved amazing feats. I, however, am going to give you a different glimpse of life with T21 and how I personally provided quite a “keen” awareness of Down syndrome this month:

Oct. 1. We are going into a restaurant? Nope, not me. No way! After my parents dragged me in anyway, I showed them… I sat under the table for a half hour. Hey, at least I didn’t scream. I came up for air and ate some food in silence. I welcomed the part when we finally left and I quickly returned to my cheerful self, like nothing bad ever happened. 

Oct. 2 The beach. I am at my calmest when near an ocean or sea. I love being pummeled by the waves and can stand there, up to my knees, for a good hour after everyone else is bored and wants to retreat to the blanket. When I’m done with the waves, I sit in the sand and bury my hands in deep. And then I inevitably take a few bites. There’s nothing like the taste and grit of sand in my mouth!

Oct. 4 My parents dragged me and my siblings to the mall. Big mistake. As soon as we entered I noted the sheer depth and enormity of the building, and I dropped to the ground in full dead-weight mode. A mall is a layered form of torture: a huge building comprised of many mini buildings inside. Way too much stimulation happening here. But this is where protesting works in my favor — dad offers to carry me on his shoulders. This has worked in several cities around the world. While the rest of the family is enjoying touring a city by foot and seeing new sites, from the Coliseum to the Acropolis to Red Square, I’m usually overwhelmed and melting down and I refuse to walk. The only option to keep me moving is to carry me. Then I’m actually happy as a lark. I am 9. 

I'm a baby-pro! Here I am whispering to my latest cousin,
Yasmeen, all the secrets of the Baby Code. (See Oct. 14)

Oct. 5 Because I threw and lost my very expensive glasses last month, my parents took me to an eyeglass shop to get a new pair. Luckily we were already armed with a painstakingly gotten prescription so all I had to do was try on frames. Simple right? Au contraire. Do not let anything touch my face. I fell to the floor — in the middle of the store — in protest. Again, dead-weight mode. My mother wrenched her back trying to hoist me to my feet. Finally my father came to the rescue and, with both of them cajoling (and holding my arms down) I agreed to try on some frames — for one second each. We aren’t sure if they looked good but we quickly decided on two pairs anyway (you always need a backup). I may have also screamed intelligibly a few times. I don’t remember but my mother said everyone acted as if they never heard a 9 year old scream before, while pretending they weren’t listening.  

Oct. 7 I was overcome with joy when my cousins arrived for a visit. So overwhelmed was I that I ran immediately across the street to greet them, without a care in the world. My mother says I’m lucky I’m still in this world and that no car was passing by at that exact moment. 

Oct. 9 Another restaurant??? Abject panic. This time I couldn’t sit under the table, but I stood in a far empty corner of the restaurant for a good 15 minutes. We call this progress compared to Oct. 1. And I really enjoyed the ravioli. @Piccolos #bestravioliintheworld

Oct. 10 My parents told me we were heading in a certain direction — then there was a lot of intelligible chatter as they spoke quickly and processed some new bit of information at lightning speed — and they changed direction. Sorry, no. I do not switch lanes. I went running for the door in the direction we were originally headed. I had to be dragged back moaning and crying. 

Oct. 12 Horseback riding. It is where I belong! I haven't ridden for almost a year but I haven't lost my mojo, in fact I got better at trotting and commanding my steed to stop and go. @HorseAbility

Oct. 13 Thanks to the latest Amazon delivery, I now have a compression vest that keeps me snug and less sensory seeking. My parents bought it in order to secure my chest bone which is on an express train growing outwards after my last open heart surgery 10 months ago. But a happy surprise side effect of this vest has been a slight calming of my sensory needs.

Oct. 14 We have a new baby cousin and I had the distinct honor of being the first of the cousins to hold her. I am her oldest cousin on this side of the family and I inwardly vowed to mentor her in the way of babies. I was extremely gentle, but occasionally overcome with emotion and couldn't help squeezing her, patting her soft head and kissing her cute face). 

Oct. 15 My parents returned to the oppressive place they call the mall — and this time, they left me with my grandparents. They did, however, take my brother and sister. Seems they learned their lesson. But if they didn’t have those babysitters, they would’ve had to choose between certain public meltdown or staying home.

Oct. 17 At the airport on the way home. Despite being a very public place, swarming with people, delays, lines and start-and-stop movements, my parents had no choice but to take me since we were heading back home. They are traumatized from previous meltdowns, accidents and even an in-flight manifestation of full-blown pneumonia which resulted in a six-night hospital stay after landing. But amazingly this trip, which included two long flights and several delays, went smoothly. Yay! We will consider traveling again!

We still fit as carry on. Whew!

Oct. 20 We are in the midst of overcoming jet lag and my mother has begun to panic: It’s been a month and I’ve refused to do any homework, so now it’s time. To humor her I actually took a pencil and played connect the dots. She was overly impressed and hopes this behavior will continue. Ha ha. 

Oct. 22 First day back to school after the holidays. To flick my proverbial middle finger at the fact that I hadn’t had a framework of school or therapy for over a month, I ran away from my classroom several times. And just for good measure, I threw my new glasses. Here’s to back to school!

Oct. 22 First day back to school after the holidays, and for a healthy dose of positive behavior, I used pictures and a few words to tell my class that I went to Moscow and New York during the break. I pointed out Red Square and other sites, uncommon for most children let alone those of us prone to freaking out in new places.  

Oct. 24 Our long awaited visit with the endocrinologist has finally arrived. My mother doesn’t even remember why she made the appointment since it was a five-month wait. According to my measurements, I’m barely visible on the DS growth chart and not even on the same planet as the “regular kid” growth chart. But doctor declares that despite my shocking shortfall (no pun intended) all is well and no one needs to care! Doctors are not mommy's favorite.

Oct. 27 Daylight saving has come to an end and most people are grateful for that extra hour they had to sleep that day. I had an extra hour to play and wreak havoc around our home before I woke up everyone else. I love to maximize that extra hour we get once a year.  

Oct. 28 On the bus coming home from my after-school program, another kid (who also has “special needs”) decided to lose it for a little while. He punched the chaperon and pulled another kid’s hair all the while screaming and shouting. I freaked out. That was really scary and so I peed in my pants, because that’s what I do when I panic. I got off the bus crying and took awhile to calm down. These special needs kids are so weird.

Despite the labels, I cannot be put in a box.
Or on a chart!

Oct. 29 My mouth needs a lot of sensory input. But most doctors and therapists can’t be bothered to diagnose past “Down syndrome.” Why bother with “trivial” issues such as “sensory processing disorder” when you’ve got an extra chromosome raging in every cell of your body? Hence, I do self therapy. In this case, I decided to chew on my new glasses. I bent the frame beyond repair and scratched the lens with my teeth. 

Oct. 30 Today I lost my jacket and my water bottle at school. Being mostly nonverbal I can’t tell anyone where I may have left them. But those are small losses compared to glasses, right? I like to give my parents the opportunity to constantly recalibrate their perspective in life. I'm good like that.

Oct. 31 Daddy was asleep still in bed so I pulled the covers off him and said, “Good morning!” Considering I’m nearly nonverbal, this simple greeting was like a happy jolt of coffee to get him out of bed smiling. All in all, I'd say October had been a great month!

This is the type of Down syndrome awareness that my family, teachers, therapists and my ever-patient PA (aka, my shadow at school) experience on a daily basis, year round. It is a 365-day cycle of battling, overcoming, rejoicing and picking up for the next battle. 

So thank goodness for October when all the uplifting stories are published, giving us hope that "this too shall pass" and that success awaits us around every corner!

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One week from surgery and we are back to almost normal! Which means no sleeping...

These bandages and pajamas - far behind us now!

Upon our discharge from the hospital the doctor gave mommy and daddy very explicit instructions:

"He (meaning me) can do anything he wants."

Ok so let me get this straight. I just came out from under the knife. My heart was stopped, cut open and repaired, placed back and made to beat again. But I can do whatever I want to do.

"If he has shortness of breath, he should stop whatever activity he is engaging in."

And then there's the issue of that red/pink line down my chest.

"Wash the scar every day. If you see any discharge, or if it looks infected come to the emergency room."

Ok, so what about school?

"Oh, that? No way. He needs to get permission from the surgeon first. Schedule an appointment to see him in a few weeks."

Ok, so again, let's get this straight: I can run, climb, be a general monkey and do "whatever I want/am able to do" but just don't go to school where I will be sitting for eight hours straight "resting" (except for my brain) rather than going stir crazy at home or climbing the walls there.

Perhaps that is because of infections and colds, but still. Let's not exaggerate.

Nevertheless as I embark upon my journey of recovery we sit here a week later in shock and awe. I occasionally need pain medication, but rarely.  I've stopped pointing at my chest and walking slightly stooped as I did those first few days. I've even stopped sleeping because, what with a a super-powered heart and all, I don't need as much rest as I did before.

Rest? Wait, I've never actually been one to sleep much anyway. I am on true hospital lag, meaning just a few hours hours of sleep can launch me through a long day with ease. Which really means that I am back to my pre-op self!

So physically I am charging ahead. Each day I look less and less like a human who has gone through surgery.

I can navigate the iPad as expertly as I did before the op!

Admittedly, I am a bit traumatized by the scars that are healing on my chest. They are a stark reminder that I really did freak everyone out, including myself, a week ago with record levels of stress in preparation for surgery.

Basically, if you saw me today you would think I were lying about OHS. You would think it was all a ploy to get your attention. The drama was intense and short lived and we never reached our worse expectations in terms of  potential complications and time in the hospital. Now, as we come down from the adrenaline that propelled us through those days, it's hard to believe it ever happened.

And from looking at me today, sans the scar, you would't believe it either.

I must thank you all for your prayers. With God's help I have powered through this sordid tale and am ready to surge on!

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And on the third day, I went home already!

And now for the most shocking news of the week:

"And on the third day, they sent me home."

The (other) book of Daniel chapter 8 verse 8

Not 72 hours after my chest was slit open, my sternum broken and my heart stopped for some vital repairs, I'm walking back home on my own two feet with very few restrictions applied to my life.

It's a bit unbelievable, if not unnerving. With a fresh scar and still clutching my chest (whether in drama or in pain I have yet to reveal), I was released into the feeble care of my non-medical professional parents. They felt the same way after my dramatic birth and then after my first OHS and then after being hospitalized for RSV and later pneumonia and when they took home a flammable oxygen tank for me to sleep with over night. Who would release a child like this into the care of his mere parents? I would not.

But mommy and abba have been down this road before when mommy regrets not having gone into medicine.

The truth is that once we left the ICU we probably could've snuck out of the hospital for several hours perhaps to the zoo or a park and no one would've noticed. There was not really much observation going on in the regular ward. Suddenly mommy and abba were full-fledged nurses who had to ask for and administer my own medicine and were left to wonder whether I was showing normal signs of pain or the kind of pain that indicated CODE RED.

On the positive side, at home we will be free of crying babies and beeping monitors. We will not be bored out of our minds. But then again, mommy and abba will not sleep anyway since they'll have to use the non-technological methods of checking my vitals, like feeling for a pulse, etc.

On another positive note, at the ICU we took some
paparazzi photos with head nurse Knuckles McGinty!

The key to a quick recovery is to relax at the
ICU like it's a day at the beach!
(P.S. That blood collector attached to my body
is translated from Hebrew as: grenade!)

From the above picture to this one in 36 hours!

Theme song of the day:

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