New York Times Neediest Cases

On Her Own, Raising Twin ‘Princesses’ With Special Needs - New York Times

Ingrid Batista scooped up her 4-year-old daughter Alexia. “Hola, mi reina,” she said, covering her with kisses.

The “reina” — Spanish for “queen” — slid from her mother’s arms and divided her attention between a Disney show and a blue basket on the floor, which she used to crown herself. Her identical twin sister, Elexia, watched her play from a purple chair.

The sisters, who both have Down syndrome and are on the autism spectrum, cannot talk or hear, but Ms. Batista spoke a steady stream of affirmations to them.

“They may not understand the words I say,” she said on a recent afternoon. “But I think they can still feel what I say.”

Ms. Batista, 31, faces numerous challenges as a single mother raising disabled twins. Money is tight. The girls’ diets are limited to soft foods because of digestion problems. They are frequently ill.

That day last month, the twins, dressed in matching cat-patterned pink pants pulled over their diapers, crawled into their mother’s lap, Elexia straddling one leg and Alexia squirming on the other.

Alexia frequently sought affection and reached for hugs when her mother would speak to her, which Ms. Batista takes as a sign that she is able to get through to her. Elexia is less emotive and learns more slowly, Ms. Batista said.

While Alexia has been walking for two years, Elexia just took her first steps in June. Neither can climb the flight of stairs to their apartment in Upper Manhattan. When they leave home, Ms. Batista takes the stairs twice, carrying the 26- and 29-pound girls one at a time.

Ms. Batista is a full-time caregiver for her children. A home attendant, Mariza Marrero, helps her five days a week, a service provided by New York City’s Administration for Children’s Services. When the girls’ paternal grandmother babysits, Ms. Batista works occasional weekend shifts, serving and cleaning at a neighborhood restaurant and earning about $1,200 a month.

When Ms. Batista, an American citizen who was raised in the Dominican Republic, moved to the United States in 2010, she hoped to earn enough money to help her mother in Santo Domingo, where she lived in a home with rotting walls, the spaces between the wooden planks so large that stray dogs would wander in. She sometimes traveled home to care for her mother, who had a heart ailment.

But Ms. Batista’s focus turned inward when she found out she was pregnant in late 2012. She and her boyfriend had been elated by the news, carefully selecting the twins’ names. Twelve weeks into the pregnancy, an ultrasound revealed two unusually thick necks, a marker for Down syndrome.

Ms. Batista learned of possible deformities and other deficiencies that could develop after they were born. “The doctor said, ‘Your girls won’t be anything in this world,’” she recalled.

While her boyfriend was shocked by the diagnosis, Ms. Batista said he told her, “I want my daughters.” She said they felt pressure from doctors to abort the pregnancy but refused. “I was afraid that no one would love my kids,” she said, tearing up. But she decided that “I’m their mother, and as the girls grow up, I will give them all the love they need.”

The couple had met working at a packing company in New Jersey in 2011. He drove a bus for the factory, where she filled boxes with lotions and perfumes. What began as a casual flirtation became more serious when he met her challenge of finding them a place to live together. But the carefree part of their romance ended, Ms. Batista said, when they learned of the high-risk pregnancy. As the pregnancy progressed, she could no longer travel to care for her mother, who has since recovered and moved to New York. Ms. Batista said she grew lonely and depressed.

The twins were born prematurely on May 13, 2013, at just 27 weeks in an emergency cesarean section. Elexia weighed 4 pounds; Alexia just 2. They remained in the hospital for almost four months.

The family moved into an apartment in Washington Heights, where Ms. Batista still lives. But before the twins’ first birthday, their father moved out.

If the girls had been healthy, Ms. Batista said, “I think it would have been different.”

She rarely talks in would-have-beens, though. She watches with joy at the twins’ progress and frets over their losses. At 9 months old, both girls could say “mama” and “papa.” But now, unable to hear, they make only incoherent gurgles. The girls also used to dance, bouncing up and down in their mother’s arms to reggaeton and bachata music. They have stopped dancing, too. Ms. Batista hopes that an ear operation might restore their hearing someday.

Ms. Batista enrolled the twins in the Kennedy Child Study Center in Manhattan in fall 2016. The school, an affiliated agency of Catholic Charities Archdiocese of New York, one of the eight organizations supported by The New York Times Neediest Cases Fund, provides one-on-one special education for children ages 3 to 5 with significant developmental delays. Students also receive physical, occupational and speech therapy. The school has also connected the twins with the state’s Office for People With Developmental Disabilities.

Ms. Batista is studying English at ASA College in Midtown Manhattan and wants to someday work as a massage therapist with flexible hours. She receives $1,322 a month total in Supplemental Security Disability Income for the twins, along with food stamps and benefits from the supplemental nutrition program for women and children, known as WIC. Last month, Catholic Charities used $360 from the fund to help with Ms. Batista’s utility bill and to buy diapers and clothes for her daughters.

Ms. Batista said Elexia once marveled at her own reflection. But since her hair began falling out in clumps a year ago, a symptom of alopecia, Elexia avoids looking at herself in a small mirror hanging on the front door. Ms. Batista has kept the mirror there, in hopes that it will again catch Elexia’s eye.

Ms. Batista often dresses the twins in matching outfits. And whenever Elexia has enough hair, she adds a bow.

“I just want the world to see them as the princesses they are,” she said. “Because they are my princesses.”

Correction: November 27, 2017 

Because of an editing error, an earlier version of this article referred incorrectly to the relationship between the Kennedy Child Study Center and Catholic Charities Archdiocese of New York. The Kennedy Child Study Center is an affiliated agency of Catholic Charities, not a beneficiary.

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