Disability Scoop: Oscar Contender Depicts Parents Coping With Son’s Diagnosis

A short film documenting the intimate thoughts and fears of a couple after learning that their baby was born with a rare disability is up for an Oscar.

Polish film student Tomasz Śliwiński and his wife Magda Hueckel turned the camera on themselves when they learned that their son Leo had congenital central hypoventilation syndrome, also known as Ondine’s Curse. The condition keeps the boy from breathing while he sleeps and means he will likely face a lifetime of relying on a ventilator.

“We really felt our life ended at that time,” Śliwiński told TODAY. “We thought we had to be locked at home with Leo, have no friends, so filming was therapy for us.”

Called “Our Curse,” the documentary follows the couple as they adjust during their son’s first months of life, coping with an array of medical equipment needed to keep the boy alive, confronting their own fears and learning to love Leo.

The footage includes frank conversations between Śliwiński and Hueckel on the couch in their Warsaw home with Śliwiński going so far as to express his concern that his son may commit suicide when he’s able to understand his disability.

Now 4, however, Śliwiński told TODAY that Leo is doing well and learning to speak and the family is moving forward.

“The therapy is over and we have to start living. It was natural we had to stop shooting this and start enjoying life as fully as we can,” the filmmaker said.

The 27-minute film is one of five nominated in the documentary short subject category. The winner will be announced at the Academy Awards on Sunday.

Students with Disabilities have Room on the Bench in NY


NEW YORK (JTA) — Standing in the back of an open elementary school classroom at the Luria Academy, a Jewish Montessori school in Brooklyn, Dana Keil asks in a whisper if a visitor can tell which children in the room have special needs.

I guarantee you won’t be able to tell,” she said.

And she’s right.

Yet Keil, 25, estimated that nearly half the children in the room have some type of disability that requires what’s called an “individualized education program,” or IEP.

As the director of special education and support services at the Prospect Heights academy, Keil is a strong advocate of including all types of children, including those with disabilities, into the same classroom.

Last September, she earned a $100,000 fellowship from the Joshua Venture Group, a Jewish nonprofit, to start Room on the Bench. Through the Luria-based initiative, Keil is beginning to council other Jewish community schools in the New York City area on how to implement inclusion models.

“Even though the Jewish community has been progressive for centuries, this is one area where we are honestly very far behind,” Keil said.

Inclusion is standard practice in public schools thanks to the Individuals with Disabilities Education Act passed in 1990. The federal statute mandates that a child with a disability cannot be placed in a separate classroom unless the severity of the disability precludes learning in a normal classroom. However, the law does not apply to private schools, and some disability advocates say that the Jewish community has not done enough to make children with disabilities, and their families, feel welcome in its day schools.

Keil said that many Jewish day schools do not accept applicants who have any kind of IEP, even if their disabilities are purely physical and not intellectual. Although an IEP can be prescribed for an incredibly wide range of disabilities, from spina bifida to an autism spectrum disorder, Keil said that most Jewish day school administrators “see an IEP as an IEP instead of looking at the individual child.”

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NYT: For Special-Care Residents, New York State Policy Means Leaving Home

Long after lunchtime one recent afternoon, John Cosentino sat at his usual table, eating his usual snacks. On this day, he was the only resident of the Brooklyn Developmental Center in its cavernous cafeteria, drafty and lit with the bleakness of an earlier era.

His father, Tony Cosentino, arranged fruit salad, nuts and pretzels on a paper plate, which John grabbed. Mary Ann Cosentino spoon-fed her son yogurt.

“Very good, John!” she said.

She tensed when John started waving his left hand near his forehead, past the ear he long ago mutilated and the blue eye blinded in a fall at the center. This was his sign that he might hit himself. Instead, he gestured for his white mitts from his L.L. Bean canvas bag monogrammed “J C,” and put them on. Then he suddenly stood up and pushed back his chair. Visit over.

For John Cosentino, 50, an intellectually disabled adult with profound autism and self-injurious behavior who does not speak, this routine has been his refuge. He has lived at the sprawling, state-run center in East New York off the Belt Parkway since he was a teenager. Sometime this year, however, his routine will abruptly end, and he, like the other remaining residents of the institution, will probably enter a group home.

Continue reading NYT: For Special-Care Residents, New York State Policy Means Leaving Home