Thursday, September 17, 2020
Distance Learning Diary: The first day of school ... at home
The second week of "real" school |
Sunday, August 16, 2020
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.
Saturday, August 15, 2020
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! |
Friday, April 3, 2020
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
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. |
Corona Fallout: 'Home Sheltering' and Remote 'Learning'
Me outside during yard time |
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 |
When parks just won't do... because they are off limits! Boredom is the new mother of invention.
Thursday, March 19, 2020
Coronapalooza: "Remote Learning" Day 5
It has come to this. |
What you may not know is that the floor onto which we are leaping is covered with blankets, stuffed animals, pajamas and pillows from our beds. And from the sofa.
This is only symbolic of how mommy and daddy are feeling as they consider the balcony.
Utter disaster.
Chaos.
Fauda! (which means chaos in Arabic and is a great series to watch in times of high anxiety!)
But never mind, most of the pressure is essentially off as this is the LAST DAY of remote learning! I'm not really sure what happened but the announcement came in last night that we no longer get our live stream of teachers who tackled various subjects to keep us somewhat up to date on our academic skills.
I'm not sure how much regression we can expect in the next five weeks. Or what we will do if the internet goes down or iPads stop working.
But never mind academics. We are being rather creative and helpful even in times of crisis and quarantine. Lucas will help the children of the world improve their judo skills, one Lego doll at a time:
Monday, March 16, 2020
“Remote Learning” Day 2
Schools are out. And so are we! |
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!
Sunday, March 15, 2020
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" |
As you can see, the bribery attempts have already deteriorated into home-baked cookies. M&D are in trouble! |
Saturday, March 14, 2020
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.
Wednesday, March 11, 2020
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!
Tuesday, March 10, 2020
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.
Friday, March 6, 2020
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" |
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.
Monday, March 2, 2020
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! |