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Friday, March 18, 2016

Normalizing Disabilities--Queen Elizabeth,the Kennedys and Today's Elementary School

Nerissa (right,) and Katherine Bowes-Lyon (left) first cousins of Queen Elizabeth, and their sister, Anne, Princess of Denmark. The two "mentally defective" sisters were hidden away in asylums, the family's deep, dark secret, along with Elizabeth's uncle John, (lower right) who had epilepsy and was likely on the autism spectrum. 

My child's best friend's little sister has Downs Syndrome. Rosie, I'll call her, is a happy little girl. In kindergarten now, she's walking and talking pretty well. On the way in and out of class, somebody has to hold her hand, as she is highly distractible.  Usually, it's one of our school's wonderful paraprofessionals. Sometimes, it's a classmate. One of her friends. Sometimes, if we're walking in at the same time, it's my child, or me. 

Kyla is one of my girl scouts. She gets fixated on poop talk. And she wanders, which scares the heck out of me when we're on field trips. Last time, when she was not with my team, her leader lost her, even before we left the school. She had "gone for a walk." It took over an hour to find her. 

Kyla is not as far up the autism spectrum as Ben, the boy in one of my children's classes. For awhile there, at the beginning of Ben's first year with my kid, it was rough on everybody--Special Ed had shown Ben a little emoticon scale: if you feel smiley face, then do this, if you feel sad face, use your earplugs, and if you feel--face with the mouth wide open--go lie down in the hall. Which Ben interpreted as, "if I scream a lot, I get to go lie down in the hall." (Kind of tough for the rest of the class, including my kid with the sensory issues.) 

Six weeks later, Special Ed figured that out. Later, my kid felt honored to be Ben's only requested playdate during that entire year. 

Princeton was a third-grade bully in my kid's mixed grade classroom when my kid was in first grade. He was a second grade bully when my child was in second grade. By third grade, he was my kid's friend--we had learned about Princeton's many disabilities, plus the fact that his father was dying of kidney disease, his mother was working two jobs to keep the lights on, and his big brother with thyroid disease was trying to parent Princeton. Despite his many learning disabilities, Princeton never, ever stopped trying to learn to read--and never stopped drawing. He's become a role model for the kid he used to bully, and I'm very grateful that, though he's tall now, Princeton still lets me hug him. 

Jason is a paraprofessional at our school, and one of the kindest and most effective people I know. I am always on the look-out for research on new epilepsy medications for Jason, who can't work full-time, can't yet marry and have children, and struggles with the side effects of his meds. 

Miriam was born without most of the stem that connects the two sides of the brain, and with the world's most competent and capable mother. At our old synagogue, they coped with Miriam by hiring someone to herd her. At our new synagogue, which takes inclusion seriously, the rabbi took a different approach. "She'll have special workers, and we'll train our older students to help her stay on task. And when Miriam has her bat mitzvah--" Miriam's mother broke down in tears-- "When Miriam has her bat mitzvah," the rabbi said, "the whole community will rejoice." 

And yes, when Miriam had her bat mitzvah, it was miraculous. First, they broke with Jewish law by allowing her to tape record both her Torah portion and her "d'var Torah," (literally a talk on Torah, but really a personal interpretation of the day's text using historic commentary on it.) If Miriam was too distracted or overwhelmed to be able to chant or speak, she could stand on the bimah while the tape recording allowed her to still share her work.

Then, they had her older brother stand on the bimah with her, directly in front of her, holding her face in his hands, so she would not become overwhelmed at all those people she had to greet and make feel welcome, and so he could help her focus on her text. 

For six long minutes, an overflowing congregation sat there and waited, in positive, loving silence and stillness, to give Miriam the time she needed. When she finally began reading her d'var Torah. The rabbi was right. The whole community rejoiced. 

I'm not meaning to deny the very real challenges it takes to mainstream special needs people. It costs our synagogue money to hire people. It costs our school funds to support special needs kids. As much as I love Kyla, and as much as I know I'm the best Girl Scout parent to handle her, there are times I wish I didn't have to--I have my own special needs kid to deal with 24/7. I'd like a break. It took us years to identify our kid's needs, and our wonderful school district screwed my kid over, as they have done to many children who don't fit the standard template of disability, like Downs Syndrome or autism spectrum. 

Yet, we live in a Blue State in a city that takes public education and public health very seriously. And I think about Rosie's big sister in adulthood, after her parents are gone, when Rosie is wholly her responsibility. And big sister has her own issues, which I think have not yet really been caught or addressed. 

Then I think about Rosemary Kennedy, who may have been developmentally delayed, or may just have suffered from learning disabilities and later epilepsy. (Rosemary is on the right in the bridal photo.) She was shut away, and later lobotomized, leaving her unable to recognize her beloved family. 

Thank God we have all changed. Thank heavens for Rosie, Lyra, Ben, Princeton, Jason and Miriam. Thank God for the new normal. 
Hey, Mr. Trump. Pay attention. We don't make fun of our teachers,  our fellow congregates, our friends. We're too busy loving them. 

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