Friday, September 15, 2017

Inclusion is for the ‘brave’ — and the stupid

My mother did it again. She got on a soapbox and ranted a bit about my "situation." Here's what she had to say, originally published at this link at the Times of Israel:

Inclusion is for the ‘brave’ — and the stupid 

As we navigate the school system here with our child with special needs, many we encounter in the education world constantly remark, “You are so brave!” 
I never associated “brave” with our decision to mainstream our child in a regular school. The law supports our decision. Research supports our decision. You mainstream or you don’t, and it is simply a decision parents make for their children, not an issue of courage. 
Brave is bungee jumping off a bridge. Brave is facing an enemy in battle. Brave is watching a loved one undergo surgery. I didn’t see the connection to our situation, but for a few moments I’d feel flattered. 
Not to be left out, I joined my siblings at their school this year.
Fully, and, apparently bravely, included.
But this supposed compliment nagged at me until I finally realized why. What they were really saying was: You must have a lot of courage to embark upon something that is destined to fail. 
You are so brave! While you must realize that your child will never be good enough and probably can’t last in mainstream education, you are taking a few years off from reality to try it out! 
You are so brave! There you go including your child with no support system and an extra financial burden while we in the system sit back and wait for you to come back to your senses! 
You are so brave! Good luck chasing down all your rights and services since no one in authority is going to lift a finger to help you get them. In fact, we may work against you! 
The attitude here toward mainstreaming really sucks. It is antiquated and pathetic. Low expectations dominate both for our “special” children’s success and our “regular” children’s acceptance of them. And these low expectations are killing our children’s advancement. 
Mainstreaming is discouraged from the highest levels. This is not reflective of a progressive, first world society. 
All of the burden falls on the shoulders of the parents, the schools and teachers willing to include a student with special needs in their class, and a few organizations, such as Beyachad, that promote inclusion. 
And those who are the system are the very ones who call us brave — because they know their own shortcomings. They know we’ve entrusted our child to their unable and unwilling hands. As my husband said, it’s not “brave,” it’s stupid. It sometimes feels like a stupid — and exhausting — decision to mainstream. 
Israel, you need to get your act together. 
Currently there are dozens of children with special needs still awaiting placement in a school for Sept. 1. Beyachad is aggressively case managing for nine “inclusion kids.” After placement these kids will need an aide — most likely someone the child has never met before, will be paid a minimum wage salary and work fewer hours than the child has school. 
I watched as representatives from a kindergarten and the Ministry of Education bullied a friend into enrolling her son in special education rather than put up this doomed fight for inclusion. They pointed out every possible problem the child would have and emphasized that there would be no support from the Ministry of Education for this child. They clearly had no hope — or desire — for success. 
How can that be? Why not solve these problems together rather than be intimidated by them? Is it laziness, incompetence, ignorance or all of the above? 
Where is the bravery on your side? 
One friend whose daughter was mainstreamed after they moved here from America said that the teacher assured her at the beginning of the year, “I am not afraid of the challenge.” 
That is bravery. That is courage. And that is honorable. 
We as parents should not have to decide to leave mainstream education because the system cannot provide the basic right of education for our child, in addition to simple services such as substitute aides, subsidized after-school programs and basic therapies. 
We should decide to stop mainstreaming when it suits our child, not when circumstances become untenable for our wellbeing. If the system really cares about our children and their education, then support the parents, support the teachers and support the child — wherever he may go!

Friday, March 24, 2017

Attaining 'Special' V.I.P. Status

A Very Important Person
(not breaking news, I realize)
photo: DG Photography (and she rocks by the way)
Disability is a touchy issue. That's why adults constantly debate the careful wording of labels they are going to use to place on us, so as not to offend while somehow conveying the idea of "different" in the kindest way possibly.

But you know what the wise ones say: "Out of the mouths of babes." Like my brother Lucas, who aside from being a pain in my butt, is a sage. Lucas, who knows no labels at this age, shattered specific labels when faced with advocacy for his older brother.

Here is how it went down:

I went with mommy to pick up Lucas and Raia from their school. Not everyone there knows me since I attend another school and so one of Lucas's classmates stalked me for about 15 minutes as we played in the school yard. I wasn't sure if he wanted something or if he was just admiring my debonair good looks. I thought for a moment that perhaps, like me, he didn't speak. But I didn't ask. His curiosity finally prompted him to say something to another classmate, while pointing in my direction, still staring.

Tiger Mom, watching all of this, had been ready to pounce. When the pointing began, a fortunate and rare wave of restraint overtook her and she decided education would be a better path than risking arrest/pummeling a 5-year-old boy. And who better to educate a 5 year old than a 5 year old?

Mommy's intervention was thus: She told the boy that I was Lucas's brother and that if he had any questions about me, he could ask Lucas. Then, rather than wait for him to ask, she sent Lucas, as an ambassador of goodwill, right on over to the boy to answer his questions.

Here's what ensued:

"Why doesn't your brother talk?"

"He doesn't talk because he doesn't talk yet."

"Why not?"

"Because Daniel is an important child. A very important child."

And thus, I shed the word "special" and was promoted to VIP status.  Which, by the way, was always the case.

Lucas, ever prescient, used the week of World Down Syndrome Day, March 21, to educate his general public about the importance of certain children. Or perhaps the timing didn't even cross his mind. Nevertheless, his simple truth and his intervention elevated my disability into a very powerful status.

Important today, world leader tomorrow!

An important child.

If adults perceived the world through the eyes of children, the world would be a much better place.

Three very important children wrestling in their parents' bed

"For the kingdom of heaven belongs to such as these.” Matthew 19:14

Monday, March 13, 2017

Pajama Party Day = Issued as a Great Salvation to Parents

School checklist:
Coat, check. Shoes, check. Pajamas?? Double check!

Sleeping at school? Not just legal
today, but encouraged!

On the first day of the third month in the year of our Lord 2017, an edict went out to all the land that school children would, for one day in the second week of the third month, be required to wear pajamas to school.

The edict went forth as a ceasefire between parents and children who, for one day, would cast aside their battle gear in the never ending war against parents clothing their children, who, in turn, were justified in their eternal battle against clothes and dressing oneself.

Across the land, cheers went forth from the children. That morning, children offered - for the first time ever - to dress themselves rather than wait for parental assistance. They sped through breakfast with nary a cry of resistance then sprinted to their rooms where they chose and donned their nightwear, even after shedding the previous night's nightwear for fresher models.

Harried parents who were known for getting their children to school late, arrived significantly earlier, much happier and extremely less stressed.

Children, giddy with the justification of their anti-clothing reasoning, floated in rebellion-free orbs from homes to cars to classrooms, even carrying - for once without argument - their very own backpacks.

In some districts the Day was known, aptly, as Pajama Day, while in others the observation of this event was known as Opposite Day in which day became night and night, day.

In all districts, there was peace and happiness for 24 hours.

Changing things up changes the world!

It was a slumber party of epic proportions! Even the adults joined in,
like my PA (or PO) Talya!

Even the fake smiles were real that day! Right, Raia?

Super heroes? Nah, just super happy!

Sunday, December 18, 2016

The 12 Days of Christmas in the Holy Land

When you go to a co-existence school that includes all the pertinent ethnicities and religions in your geographic area, Christmas is likely to be a part of your curriculum. Hence, Raia and Lucas have been basking in Tis the Season for a few weeks now.
Raia's first encounter with Santa was actually with Baba Noel!
Note the decor in Raia and Lucas's classrooms (where I visited so I too could get my fill of holiday spirit). Raia's class also toured a church outside the Old City to ogle the Christmas decorations. This tour was replete with a visit from Baba Noel!

I visited Raia's classroom to get in the holiday mood
As you can see, a plethora of holidays are converging and colliding. Happy Hanukkah! 
Only in the Middle East: An olive tree
serves as the Christmas tree 
Not to be outdone: Lucas's classroom! 
And here is Raia coloring in her "Mother and Child' stained glass window!
But when you go to a kindergarten that happens to be reform Jewish, Christmas is "extracurricular"/spectacular. And everyone in the class makes a mandatory appearance at your Christmas party. Because everyone wants to know: What does a REAL Christmas tree look like? And by real, they mean, one not seen in the movies but in real life, like at my house. Because we have a real fake tree.

And so, with nary 48 hours until we would be leaving the country for more wintry climes (NY=White Christmas), my entire class (plus siblings and parents) was invited to our (relatively tiny) apartment for a Christmas celebration just 5 kilometers from where it all began!

Here's me opening the door to the humble
beginnings of the Ultimate Play Date 
Here's me 30 minutes later: I may have passed out from the
shock and overwhelming joy of hosting ALL
my friends at MY house at one time.
Shock. And awe.
Truth is, they all came for this photo op right here:
Rockefeller Center, move over!
That was about 50 people who mistook our humble Bethlehem Road (oh the irony of that name!) apartment for the Fifth Avenue department store windows!

I prefer to leave people guessing about how I am feeling, rather than use words to inform them. And this time, my parents guessed right that YES I would LOVE to host about  dozens of people in my home for a Christmas party. It probably started with how I enthusiastically ran around with my aide's phone at school one morning this week showing everyone photos of our decorated tree. That small gesture spawned one of the largest Christmas parties in the Jewish state since the birth of Jesus. Who was Jewish. But never mind. (This video might clear things up, or absolutely not, but may be really funny.)

It was a night of miracles, which characterize both Hanukkah and Christmas, making this party ever more significant. Here were just a few miracles from Saturday night:

  1. For the first time in their existence, every toy in our home was played with! (Most parents know that kids do not play with their own toys.) It was as if The Island of Misfit Toys was released from its bondage and all the toys were loved yet again.
  2. Not one toy was broken or missing! 
  3. The tree remained standing!
  4. My friend's baby sister's shoes were found the next day under the tree!
  5. We had more food and sugar than children to consume it all!
  6. More people drank mulled cider than spiced wine!! 

Since I don't use many words, my drop to the floor to sort of soak it all in was probably an indication that yes, I was in shock and awe and utter delight to host the ultimate play date/Christmas party.

Really what we took away as loot from this Ultimate Play Date/Christmas Party is that you don't always have to go to a coexistence school to be loved and accepted. Sometimes you just get lucky enough to be surrounded by the best friends that have all bonded together despite different religions and chromosomal pairings.

And that is what the spirit that birthed Christmas is all about! Merry Christmas everyone!

Utter chaos
Utter delight!
You could call it our first rave. Maybe. 

Monday, December 12, 2016

Young babies, ancient places

At the Church of the Redeemer

This is how babies living in Jerusalem spend a day off from school: touring ancient churches and other sites that we cannot quantify because we still think 20 is "a lot."

Lucas and Raia, who attend a "coexistence" school in Jerusalem, had the day off for the prophet's birthday. They took the occasion to learn more about Christmas and the history of Jesus in the Holy Land.

They scaled ancient steps like nobody's business, climbed fountains that survived centuries of conquests, surveyed Christmas trees, nativity sets and stained glass windows. And they took stock of the many versions of Jesus on the Cross in paintings, sculptures and trinkets in the nearby shops.

Oooing and Aaahing at the Holy Sepulchre

Joined by three grandparents 

Scaling the fountain at Papa Andreas Square like invaders of yore

We left that gargoyle in shock!

Monday, November 21, 2016

Breaking News! Albert Pujols Meets Me, Daniel in Israel!

In a bit of breaking news from this side of the world, baseballl star Albert Pujols, three-time MVP and 10-time All-Star, met me yesterday in Jerusalem!

He scooped me up as if I were a hanging curve ball
begging to be launched into the bleachers.
Here I am, sandwiched by amazingness! Dee Dee and Albert Pujols!
And he didn't just meet me and shake my hand, but he scooped me up in his arms and requested someone take a few photos with me. Yes, folks, you read this right. It's not everyday that someone gets to meet famed baby blogger Daniel, but this legendary baseball player did and he recognized greatness when he saw it. Which is probably what makes him great!

The truth is, despite my spin on this situation, I was absolutely enthralled with my new hero. As soon as I got back to school after this amazing encounter, I ran around with mommy's phone showing everyone the pictures of us together. And honestly, it wasn't just Albert, but the true powerhouse of the family, Dee Dee, who stole my heart.

This power-hitting duo bring life wherever they go. All MLB stats aside, here is the real reason  Albert Pujols is my hero: He and Dee Dee are always helping and advocating for people with Down syndrome, a cause close to my heart for genetic reasons. While most people are looking for ways to bring an “end to DS” through detection before birth, the Pujols are trying to help those of us with Trisomy 21 to lead better lives and to help us fit more aptly into the accepted version of society.

I think that is amazing. They know about such challenges firsthand: The Pujols’ eldest daughter, Isabella, is 18 and has Down syndrome.

The couple visited Shalva National Children’s Center in Jerusalem yesterday. Shalva is my old stomping grounds. And being one of the few Christian graduates of the program, I had the honor of welcoming and hosting the Pujols, who are also Christians.

About 40 percent of Shalva’s participants have Down syndrome. The new 200,000-square-foot  center, where I will probably return for the after-school gram in a year or two, includes an inclusive park for all types of children.

The Pujols weren't content with just touring Shalva: Albert gave a 5-minute batting clinic to two participants as well. And several autographs. And made several children and quite a few adults (such as my parents) very happy!

Can you see my shirt? "Future MVP" standing with former MVP!
"And a good day was had by all." Go Pujols!

Friday, November 18, 2016

The Greatest Birth Story Never Told

This is today.

This is -3 years ago, -2+months before due date

This is -9 weeks before due date, or Day 2 and counting.

Her insistence on an early birth earned Raia lots of fun wires and tubes
that we all wanted to play with ... and a lot of TLC at the NICU addition to other sorts of attention.

Pure and innocent as the wind driven snow. For now.

A few months after her very early birth, Raia was declared by doctors "up to speed" with her chronological age rather than having to pro-rate her development according to her preemie age. She was 6 months and she had caught up to "normal" (as if there's such a thing as normal)* as a half-year-old baby in weight, height and milestones. 

Today, on the celebration of her 3rd birthday, we can start to measure just how much she has surpassed "typical"* 3-year-olds in our family having perhaps the most extreme personality of the mix here.

Princess. Running back. 

Raia has far outpaced us, her brothers, in size, in independence and in attitude compared to us at her age, and sometimes even at our current ages. 

Size. Without abandon she has tossed 3T to the wind, busting through her age size already while Lucas, 4 years 10 months, is just now retiring those. 

Independence. While Lucas and I still willingly put out our arms and legs to allow you to dress me, Raia has been insisting on clothing herself for about a year now, after she picks out her own clothes, something Lucas and I never even knew was an option in life.

Self-potty trained before age 2. Enough said.

Attitude. In her short three years, Raia has pioneered such acts as the shoulder shrug which indicates, "no" without words. Emphatically. Defiantly.

While Lucas and I fling ourselves into the arms of strangers - pretty much anyone, anywhere, anytime - Raia holds back, analyzing the situation and giving the person the up-and-down several times. Unmoved by the display of affection and all the attention it gets us, she plays hard to get with aplomb.

The complete package.
Stubbornness. I thought I had perfected the stop, drop and roll move of resistance when being asked to do something or go somewhere I didn't want to, but then Raia took it to a new level. She stops, drops and planks whipping her body into a rigid log and instantly doubling her weight so as to prevent physical intervention by an adult.

Tough Love. Or Aggression? Raia's running hugs (when she does hug) are made with the same force as a linebacker rushing a quarterback. Lawrence Taylor, move over.  

She shows heightened mastery of "selective listening" and, like an undercover agent, pretends she hears or understands nothing said to her by teachers, friends and even parents.  When it suits her. Why didn't we ever think of that?

And then there is the side glance, better known as the side glare - the smoldering look of death that speaks more than words: a warning, a threat.

Raia must be strong to survive. Third child, ruminator and mommy's girl, Raia is a crucial member of our threesome of unstoppable and wild mayhem. We love her so much with each new day. But we never could've imagined how the tiny preemie, lying innocently and demure in a tiny hospital incubator, would someday become the force that she is today. 

Although we should've known that when she busted her way through to a two-month early birth. Silly us.

Happy Birthday, Raia!

Look out teenage years!
* in this blog, we use the terms "normal" and "typical" loosely