Sadly, with all the hoop-a-la here in CA particularly these days, there are children who struggle and parents who seek help. I don’t have the answers regarding illegal immigration :? , I wish there was a way to ease the opportunity to obtain work visas, but it’s a complex issue and once again, families struggle seeking help and guidance :cry: . This was in today’s paper:
Andy
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Overwhelmed and under-equipped
Latino immigrants whose children have autism struggle to find care and support
By Gil Griffin
STAFF WRITER and
Norma de la Vega
September 7, 2003
‘My name is Andrés.”
Those are the words on a tiny black, plastic square, with illustrated icons of a house and a telephone. It’s just one of the learning tools Rosa and David Sanchez of Spring Valley use to help their 9-year-old son communicate.
Help for parents of autistic children
Several organizations offer parents information about autism in Spanish and support, including:
The San Diego Regional Center’s Grupo de Conversación meets the second Tuesday of each month, from 6:30 to 8:30 p.m. at its National City offices. For more information, contact parent coordinator Rosario Guerrero at (619) 336-6600. The San Diego Regional Center can be reached at (858) 576-2938.
The San Diego County Office of Education organizes support groups for parents with disabled children through its Hope Infant Family Support Program, which may be reached at (858) 292-3700. Groups are organized by school district.
The South County Special Education Local Planning Area organizes a support group. For more information, contact coordinator Laura Cervantes at (619) 498-8171.
Exceptional Family Resource Center, 9245 Sky Park Court, Suite 130, San Diego, phone (800) 281-8252.
The North Coastal Consortium for Special Education, call (760) 471-8208.
Autism Society of America, San Diego chapter, 3731 Sixth Ave., Suite 200, (619) 298-1981, offers general information and support in English. It’s Web site is www.sd-autism.org
At 1½, he stopped talking. That wasn’t the only abrupt change the parents noticed. Andrés got easily frightened by loud sounds. At night in bed, he pulled the covers over his head and cried.
His perplexed parents – who had legal U.S. residency status but lived in Tijuana – brought Andrés to San Diego neurologists and psychologists, searching for answers. Eventually, he was diagnosed with a developmental disorder virtually unheard of in Mexico – autism.
As autism grows at an exponential rate in California, the number of Latino families coping with it also has soared.
Of the California Department of Developmental Services’ severely autistic caseload – which in the last five years has doubled from 10,000 to 20,000 – slightly more than 2,000 involve predominantly Spanish-speaking homes.
Autism is a lifelong disability that is challenging to any family. But when that family is composed of immigrants – many of whom don’t speak English, are poor and lack education – the burden is overwhelming. It’s even more so when they are in the country illegally.
In the Sanchez household, Andrés, whose thin frame is topped by thick brown hair, is often aggressive toward people. In his bedroom, he watches cartoon videos, always in the same order. Andrés uses diapers, has trouble sleeping and attends a special-needs school.
“Other parents of disabled children have an advantage because their children can tell their feelings, like say, ‘I love you,’ ” said David Sanchez, a car mechanic. “Andrés has a bond with his mother, but not with his brothers and not really one with me. That hurts.”
Autism caused the Mexican couple to move north of the border, closer to the resources that could help Andrés. These are not easily obtained, however.
And it’s not just today that they have to worry about. Rosa and David Sanchez have to plan the financial future of their other sons, David, 16, and Daniel, 11. And they worry about who will take care of Andrés once they are gone.
No known cure
Part of what frustrates parents is that autism – studied by scientists for 60 years – has neither a cure nor a definitive explanation.
A leading theory is that autism is caused by defective genes, though why these genes go awry is unknown. Some experts believe environmental factors may contribute to the onset. A much-disputed theory holds that autism is triggered by a mercury-based preservative administered to children when they are vaccinated.
San Diego is a hub for studying the disease, with research being conducted at the Center for Autism Research at Children’s Hospital San Diego and at UCSD. And a number of local organizations provide support for families coping with it, including the Doug Flutie Jr. Foundation for Autism, created by the Charger quarterback after his son was diagnosed with the disorder.
Not much at all is known about autism, nor is information available in the countries where many Latinos come from, nor is there much literature here, in Spanish, about the disorder.
Many Latinos must navigate through the bureaucratic mazes of insurance companies, school districts and state agencies to get help for their children.
And being assertive enough to ask for help is tough for new Latino immigrants, said Rosario Guerrero, of the San Diego Regional Center, a nonprofit advocacy group for children with developmental disabilities. She runs its monthly support group for Spanish-speaking parents, Grupo de Conversación, which the Sanchezes attend.
“It’s believed that you cannot ask for services,” said Guerrero, whose son has cerebral palsy. “Only if an agency offers you something, you can take it. That’s slowly changing. Here, they have the right and the responsibility to improve their children’s lives.”
But often, there are barriers.
She said that some people need a year of residence here to qualify for insurance. She said she sees a lot of cases where Latino families can’t get services such as insurance, financial aid and in-home support.
Even if they get in-home help, breakdowns in communication and trust sometimes occur between Latino parents and the non-Spanish-speaking physical and speech therapists working with their children.
The Sanchezes’ medical insurance company and the Social Security Administration pay for most of Andrés’ care, and the Regional Center helped connect them with trained caregivers.
“But it’s not enough,” Rosa Sanchez said. “It’s never enough.”
For undocumented immigrants with autistic children, there is also help, Guerrero said.
Financial services are not available to them, but the school districts must provide these children services such as therapy and special education, she noted.
The Regional Center refers these parents to institutions that can help. In some cases, the center pays for an autistic child’s medical attention. And it also places some children and adults in group homes.
Despite this assistance, she said, many undocumented parents don’t ask for it.
Some believe that if they receive any kind of help, their chances of eventually becoming legal residents will be compromised. Others have a more fundamental fear.
“They’re afraid they’ll be deported,” Guerrero said.
Keeping quiet
María is one of those who lives in fear.
She is an undocumented immigrant, as is her husband, a construction worker. They are quietly raising their 6-year-old twins who were born in the United States. One of them is autistic.
She’s afraid she will be deported if she raises too many questions about the help he is getting.
“Then, what would happen to my kids?” she asks in Spanish, her voice breaking.
María, 30, was born in San Luis Potosí, Mexico, and has lived in the United States for eight years. She was afraid the assistance her son was getting would be jeopardized if she were identified.
She said that when her twin boys were 2 years old, she began to suspect something was wrong with one of them.
But she and her husband had no medical insurance, and all they could do was take Oscar and Omar to a community clinic, where they received check-ups and vaccinations.
She would tell the pediatrician that the children were not developing at the same pace, that Omar didn’t talk or interact with his brother. He would always tell her that kids did not develop the same, not even twins.
She thought he was wrong, but she didn’t have the language skills or money to seek a second opinion.
The mother’s fears were confirmed three years later, when she enrolled the twins in kindergarten in Vista.
On the first day, the school bell sent Omar into a panic. That’s when a series of medical evaluations began that led to his diagnosis.
“No one had ever said anything to me about autism,” she said.
She said that Omar suffers from a milder form and is able to talk, but he has problems relating to other kids and occasionally has severe tantrums.
With the school’s help, Omar began to receive specialized instruction. And she enrolled both boys in Healthy Families, a low-cost, subsidized medical insurance plan they could afford.
Experts believe that autistic children’s earliest years are the best time to begin therapies that can help them develop their potential. María blames Omar’s pediatrician for not diagnosing him earlier. But she’s not going to press the matter.
Overprotective
As with any culture, Latino practices and attitudes play an important role in how they respond to their child’s developmental disability.
A bilingual special-education teacher, Carmen Hueso, said Latino immigrants frequently overprotect their children who are disabled.
“If they are only going to be kept behind closed doors, then they are going to be more afraid as they grow older,” said Hueso, who works at Breeze Hill Elementary School in Vista.
She said autistic Latino children generally arrive at school with a poorer vocabulary than the other kids. “If the Anglo child arrives with five words, a Latino one will arrive with three,” adding that sometimes they arrive with none.
In their support group, the Sanchezes met other Latino parents struggling to cope with their children’s autism. But they also saw, in one meeting, a parent’s denial of this type of disorders.
“A father asked (the moderator), ‘What are you going to do about my son?,’ ” David Sanchez said. “When he was told that there’s no cure, he left. In our culture, the man is the head of the house. Even if his wife wanted to stay, she couldn’t.”
But Guerrero said those attitudes are changing.
“Parents used to think they happened because they did something wrong, and they felt guilty. I haven’t seen that with parents in my age group. Education has helped make that go away. The parents now think, ‘This happened to us. How can we improve the quality of our family life?’ ”
Difficult to accept
Elsa Medina felt guilty for a time.
She believed she was too old to have kids when her son Juanito was born when she was 39.
He was diagnosed as autistic three years later.
The couple spoke about their life with autism recently from the back yard of their home in the Nestor neighborhood of South San Diego. She is a 45-year-old homemaker, while her husband, Juan, 54, is an educational administrator. He is poised to begin working again after losing his job at the San Diego County Office of Education due to budget cuts.
Elsa Medina, an Acapulco native, arrived in San Diego from Tijuana six years ago, when she married. She is a legal U.S. resident, and her husband is an American citizen. Their son was born in the United States.
Juan Medina is bilingual, while his wife speaks only Spanish.
Six-year-old Juanito is tall, slim, and has beautiful black eyes. He is hyperactive – his hands are continually in motion – and he does not speak any words; he only makes sounds.
For a time, the mother said, she refused to accept her son’s disorder and fell into a depression. She said she felt lost in her new country, far from her family’s support.
“I wanted to run out of here.”
Today, Juanito is able to recognize some commands in English and Spanish. He has learned to drink water from a container. And when he wants to go to the bathroom, he makes a “bip, bip, bip” sound, which tells his parents to take him to the restroom quickly. At night, he uses a diaper.
Juanito is affectionate and quickly hugs a stranger. He likes other children but doesn’t know how to interact with them. And at times, he has violent tantrums.
Little by little, Juan Medina has found help for his son, mostly by doing his own research and knocking on a lot of doors.
Before he lost his job, his son was covered by private medical insurance. Afterward, his father obtained Medi-Cal for him, which covers his basic care but not the therapies he needs. His father has had to find nonprofit organizations that can pay for them.
One of the resources he found was a Spanish-speaking support group for parents of autistic children, organized by the San Diego County Office of Education.
Elsa Medina said that sharing experiences with people in similar circumstances has taught her to be more assertive. Still, without being able to speak English, even requesting a doctor’s appointment for her son can be an exercise in frustration.
Her husband said that he has received many desperate phone calls from her asking his help with these simple tasks.
“Sometimes, we have ended up fighting,” she said.
The mother recalled that once her son broke free from her hand at the San Diego Zoo and ran to a woman wearing shorts. She said that he stroked the woman’s leg and rubbed himself inappropriately against her. The mother said she was mortified. She tried to tell the woman that her son was ill, but she couldn’t communicate in English. She ran to find her husband, so he could talk to the woman and explain their son’s condition.
After years of tears and anger, she has learned to be an advocate for her son’s rights, even in Spanish.
“If he can’t speak for himself, then I must do it for him.”
Juan Medina connected with a group that provides up to 32 hours of child care a month for Juanito so the couple can take an occasional break from the exhausting routine of living with him.
Even so, they have no social life.
The mother has family members in Tijuana, but she had to stop visiting them. One day, while she and her son were waiting at the pedestrian crossing at the border, he grew agitated. He took off all of his clothes and refused to put them back on.
Handing down heritage
Like the Medinas, Adela and Armando Magaña have pushed hard to get Franco, their 12-year-old autistic son, help. Adela Magaña jokingly calls “Special Education Rights and Responsibilities,” a state department of education guide for parents, the family’s bible.
With the department’s and the Regional Center’s help, Franco got a personal aide. Today, Franco, who has just started eighth grade, takes adaptive physical education classes and gets speech therapy.
At home, the Magañas strive to hand down their Mexican heritage.
Each week, the friendly, mildly autistic boy goes to folklórico dance classes near the family’s Chula Vista home. He also speaks some Spanish with his parents, who have taught him.
“We keep him busy,” said Adela Magaña, who is 49 and runs a Chula Vista beauty salon. Because of Franco’s needs, she works 30 hours a week. Her husband drives a truck part-time.
Franco was diagnosed with autism after kindergarten. The Magañas withdrew him from private school and enrolled him in a public school where special-education classes were available.
Still, Franco struggles.
When he hears loud noises, he gets anxious and wrings his hands. Franco can’t walk alone on the sidewalks, because he doesn’t recognize the danger in the passing cars.
“He’s going to need guidance all the time,” Adela Magaña said, tears starting to flow down her cheeks. The Magañas had envisioned pushing Franco to be a doctor, a lawyer or a professional person, like some of his relatives. After all, there were no disabilities in the family.
“Our dreams,” an anguished Adela Magaña said, “were shattered.”
Norma de la Vega is a free-lance journalist and contributor to Enlace, the Union-Tribune’s weekly newspaper in Spanish.
Copyright 2003 Union-Tribune Publishing Co.