Chicago woman steps up for migrant kids with disabilities

Keinymar Avila, a tiny 7-year-old with microcephaly who has never been separated from her mother, curled up in the arms of a woman she’d recently met.

Her mother, Yamile Perez, glanced over at her daughter to make sure all was well as she attended a virtual meeting with Chicago Public Schools officials who were evaluating Keinymar’s needs. It is not easy to let someone else hold your child, especially if your child requires special medical care.

No one knows this better than the person cradling the girl, Mary Otts-Rubenstein, a Chicago resident who has her own child with disabilities. Otts-Rubenstein has taken it upon herself to help over a dozen migrant families with medically complex kids enroll in Chicago Public Schools.

The children range in age from 7 to 13. Some are in wheelchairs and have conditions such as autism, cerebral palsy and Down syndrome. Few have ever been enrolled in school before; all survived journeys crossing jungles and rivers to reach the United States.

Otts-Rubenstein has been leading volunteer efforts for these children for several months, stepping in where city officials have failed to identify and provide acceptable solutions for disabled migrants. She got involved after another volunteer who is helping migrants called her, knowing her expertise.

Any family with a child who has disabilities faces unique challenges. But what has been so hard for these families in particular, said Otts-Rubenstein, who doesn’t speak Spanish but has personal experience navigating the complex public school system, is having nowhere to turn for help.

“As a family with a disabled kid, the only people who know what we’re going through are other families with disabled kids,” she said.

Experts say children with severe disabilities born in the United States are already at a disadvantage in accessing a quality education, but migrant families with disabled children face especially daunting hurdles.

“As (migrant) families come to Chicago, we know they are struggling to find housing, employment and health care. This process becomes especially hard for families with children with disabilities,” said Michelle Garcia, manager of organizing and community development at the nonprofit Access Living.

Chicago Public Schools has a specific office to identify and serve diverse learners, but Otts-Rubenstein, who went through the process of enrolling her own daughte, said the system is overwhelmed.

On a recent Saturday morning, she opened her Lakeview neighborhood apartment to several migrant families staying at the Inn of Chicago so they could have a safe place to conduct individual assessment meetings with staff members from Chicago Public Schools. Migrants spent hours on borrowed iPads and computers, and were asked questions about their children’s needs they had never been asked by medical professionals.

Without Otts-Rubenstein’s help, the assessment — a long and exhausting bureaucratic hurdle — would likely would have taken months.

The migrant families took public transportation to get to her home and lifted their children — many in wheelchairs procured by Otts-Rubenstein — up over the steps and through the double doors inside.

Keinymar, who Otts-Rubenstein met at a police station over a month ago, was the first child brought in.

Seven-year-old Keinymar is not weak but small, and her limbs bend outward.

She weighed less than 20 pounds when, held tightly by her mother, she crossed the border to the United States in August.

Keinymar was born with microcephaly as a result of the Zika virus — a condition where a baby’s head is smaller than normal. Because of this, she also has seizures, developmental delays and intellectual disability.

The family left Venezuela for Colombia because she needed to have a major surgery to implant a feeding tube in her stomach.

“We spent three years (in Columbia) waiting for her operation and nothing. Still nothing,” said her father, Keinar Chacin.

They walked through seven countries, slept on the street and sold lollipops on corners on the way to make enough money to get here. Three days being carried through mountains and weeks walking across country borders left the little girl barely responsive.

"Thank God, my daughter was strong in that jungle, because not everyone could survive,” her mother said in Spanish.

They crossed the border and took a bus to Houston, where a children’s hospital gave her a feeding tube and nursed her back to a healthy weight. With help from the hospital, the family took a bus to Chicago because the father’s brother was here, staying in a shelter.

After they were dropped off by the city at apolice station in the River North neighborhood, a volunteer found Keinymar lying on the ground. She called Otts-Rubenstein, a fellow volunteer she knew had expertise helping children with disabilities.

Otts-Rubenstein arrived with extra medical equipment in her car, but was worried about being able to have a conversation in Spanish about health care needs with the family.

But when she saw Keinymar lying on a yoga mat next to her family, her instincts kicked in. She immediately got on the floor with the little girl. Gently, she checked the hole in Keinymar’s stomach and showed her mother how to use the pump she had brought to feed her.

Otts-Rubenstein is the full-time caretaker for her daughter, Evelyn Rubenstein.

Evelyn, or “Ev,” is medically complex and disabled, and struggles with many of the same health issues the children of some migrant families do: Cerebral palsy. Seizures. Mobility. Temperature regulation.

Otts-Rubenstein and her wife, Rachel Rubenstein, adopted Evelyn from a different foster couple.

“Ev is a happy, silly kid with disabilities, who makes us proud and makes us laugh every single day, but the access and management of her care is a daily fight with health care institutions, schools and society at large,” she said. “And we have the privilege of being white, educated and English-speaking. Something none of these folks have.”

On Otts-Rubenstein’s left bicep is a tattoo of the first sugya, or portion of the Talmud — an ancient Jewish text — she ever learned. It reminds her that an essential quality of leadership is demonstrating how to make the impossible possible with just what is in front of us, she said.

She converted to Judaism in her mid-20s, and stepped away from her job as a project manager to respond to her daughter’s needs.

“I can’t do a lot of things, but I can do this,” she said. 

She says the same about the over two dozen migrant families with medically complex children she helps out on a weekly — and often daily — basis.

“Whatever we can do along the way to help them get to the next step is what we’re supposed to do,” she said.

The goal when taking care of any medically complex child, Otts-Rubenstein said, is to make sure that your child is alive at the end of the day.

“They’ve done that alone, basically walking across a continent, and have kept their kids safe,” she said. “These families should not have made it. And they did.”

That, she said, is a miracle.