Righting a Parent’s Finances Helps her Son’s Well-Being

The only way that Nicholas Beltran has ever been able to communicate verbally with his mother, Wilmarie Dominguez, is with two words. One sound he emits — an “uh uh” — very clearly means “no,” while the other, more commonly vocalized noise expressed as “mahh” — often requires investigation.

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Ms. Dominguez, 32, a single mother, said that long ago she interpreted that sound as a cry for attention, but determining exactly what Nicholas needed from her was often difficult.

Nicholas, 12, was born severely disabled. Cerebral palsy has restricted him to a wheelchair. Epilepsy has at times triggered up to 17 grand mal seizures a day, and Ms. Dominguez said it had impaired his vision, leaving him legally blind. Hypertonia, a condition that limits joint movement, and developmental delays also exacerbate his problems.

While he often casts his eyes in the direction of voices and turns his head to the kitchen once he smells his dinner, Ms. Dominguez said that the exact degree of her son’s cognitive faculties is often ambiguous.

“I didn’t know how to prepare myself,” she said, recalling the moment when doctors told her that her son would be born with problems.

“I spent two whole years crying myself to sleep,” she recalled, “and then I told myself: ‘Why am I crying? There’s nothing I can do about it. All I can do about it is deal with it. I just did the best I can, giving him loving, tender care.”

That care has been more or less around the clock. Nicholas has to be bathed, his food has to be puréed and his clothing has to be changed along with his diapers.

When Nicholas is not at the Westchester School for Special Children, where he has been enrolled for the past few years, mother and son are usually in their Bronx apartment, with soap operas and cartoons blaring on the television.

Ms. Dominguez, who once received frequent help from home attendants, is now trying to hire a home health aide, someone who, officials say, would be more appropriate in her situation.

She admits that relatives are too leery of Nicholas’s condition for her to rely on them for assistance.

His father has almost no involvement with him, Ms. Dominguez said.

“Sometimes I overwork myself,” she said. “I wish I was three people. I’m so busy being supermom that I forget myself sometimes.”

Taking her son to myriad doctors’ appointments made it hard for Ms. Dominguez to hold down a job. She recently completed training to become a day care worker and said that she was waiting to hear about a job at a nearby day care center. “I care for little kids like they were my own,” she said.

The family’s income consists of just over $1,000 a month from a combination of Social Security disability payments, public assistance and food stamps.

Mother and son had been a part of the Children’s Advantage and Fixed Income Advantage program, which paid their rent of $1,070, until the city cut financing for the program; the subsidy stopped in August 2011.

After that, Ms. Dominguez wound up $7,485 in arrears on her rent. She sought the services of Catholic Charities Archdiocese of New York, one of the organizations supported by The New York Times Neediest Cases Fund, to help clear the debt. Grants from the Catholic Charities HomeBase program and the city’s Family Eviction Prevention Supplement program cleared up the arrears. A grant of $313 from the Neediest Cases Fund helped pay Ms. Dominguez’s portion of her November rent and overdue Consolidated Edison bills.

With Catholic Charities assisting her, Ms. Dominguez’s landlord agreed to reduce the rent to $900 a month, with the Family Eviction Prevention Supplement program paying $650 of that and Ms. Dominguez contributing $250.

Righting her finances has given Ms. Dominguez a great deal of peace, which she said was imperative to her son’s well-being.

“If he senses that I’m scared, he’ll get worried too,” she said. “If he gets too excited, it gives him a seizure. So I try to keep him nice and calm and tell him, ‘Nicholas, calm down, because you know what you’re going to do to yourself.’ ”

And in his way, Nicholas has the ability to keep Ms. Dominguez grounded.

“He has given me a lot of strength,” she said. “Before he was born, I was totally clueless. I really didn’t care about anything. When it came to thinking, I didn’t want to break my head on anything. I now think about everything he needs, all the places I need to take him, the doctors he needs to see,” she said.

“There’s something about having him that has woken me up.”

Even with her newfound clarity, Ms. Dominguez continually struggles to understand her son’s needs. But she has never once struggled to love him.

In her world, “There’s no me,” she said. “There’s just him.”

A Rent Subsidy Ends, But a Disabled Boy Gets Help – NYTimes.com.

Jimmy Kilpatrick, a national recognized professional special education advocate since 1994.

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