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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!