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!