Families learn to live with autistic children

February 16, 2008 8:08:28 PM PST
Michael Hamilton slouched as his fingers ran over the piano in the family living room. "Sit up tall and handsome," his mother Sylvia Hamilton reminded, standing next to him in their McAllen home. "Tall and handsome."

"Yes, mama," he replied, straightening his shoulders.

The conversation repeated itself a few minutes later as Michael walked away from the piano and started talking to his father, Patrick Hamilton.

"Tall and handsome," Sylvia whispered.

Michael straightened, then asked his father about a trip he took with his mother a dozen years earlier. Michael wanted to know which airport had the tram. His parents didn't remember. He kept providing details about the train.

"Right, mama?" he asked.

"I don't remember," she responded.

Calmly, his father told him it had to be Dallas-Fort Worth's airport.

Michael kept asking questions.

Twenty minutes later he accepted his father's answer.

Patrick never lost his cool. He calmly repeated the name of the airport, helping his autistic son grasp the information he longed to understand. Patrick and Sylvia Hamilton have helped their son grasp and understand information for 23 years. Michael has changed both of their career paths, and affected not only the couple, but the lives of their other two children, ages 19 and 27. But the Hamiltons have no regrets.

"Special children are born into special families," Sylvia said. "We're highly blessed."

And special families, like the Hamiltons, do a lot to help their children with disabilities long into their adult years. The constant need for care changes the course of all of their lives.

The scope of that impact varies with the severity of the disability. Many with disabilities are able to function on their own in society; others need more support from their families.

Patrick spends countless hours with his son, and says he truly enjoys his company.

"He's kind of like my best friend," Patrick said. "I don't know what I'd do without him. He's my partner. He's who I hang out with. We go fishing over at the Island and catch whiting. We ride bikes together. He likes to throw the Frisbee."

The two recently put together and painted a wooden model train. Although both Sylvia and Patrick enjoy spending time with their son, they worry about the lack of resources available to adults with disabilities. They wonder since there are such few options for Michael what will happen to him when they pass on and they long for people to be more open-minded about their son.

"If people could just understand he can do things," Sylvia Hamilton said. "Just give him a chance."

Throughout their children's early years and through high school, parents have support through the school system (although some parents say the relationship between them and the school districts is contentious), said Alma de la Garza, the director of Options Inc., a McAllen daycare center for adults with special needs. But when the child graduates, parents again have to become full-time caretakers for their now-adult children.

There are few resources available to many adults with disabilities in the Valley. Because of this many parents resort to placing their adult children in adult daycare centers that serve the elderly.

"That's not an environment where you want them to be," de la Garza said. Many adults with disabilities learn poor habits in those centers or are taken advantage of, she said.

The Hamiltons searched for more than a year for a place where Michael could go during the day before finding Options. The center has been a blessing for them, they say.

Clients have opportunities there to learn new skills. They can clean and vacuum, work on reading skills and improve social skills. This fosters a sense of independence and worth that many parents desire for their children, de la Garza said.

"Here they're able to do a lot of things," de la Garza said.

Even with the independence that Options has given their family, Patrick and Sylvia say they don't make long-term plans because life with Michael can be unpredictable.

"We don't make a conscious effort to make things normal," Patrick said. "It's never hard, never easy, but it requires a lot of attention."

Caring for Michael also has required patience and determination. The couple refused to allow outsiders to place limitations on their son. When a doctor or educator said Michael would never do something -- tell time, read, etc. -- they didn't let that information stop them from trying to teach their son.

Michael now tells time well. He is bilingual, reads and writes and is "a great problem solver." He also can find almost anything he wants to learn about online.

"We're just doing the best we can with him," Patrick said. "We're not going to give up on him."

Over the years, the couple has learned "that anything's possible."

Disabilities hit the entire family.

"It's been hard on his brother and sister," Patrick said. "They were not emotionally equipped (to cope with a brother with a disability.) It's still very difficult for them to understand."

Families go through a grieving period when a child is diagnosed with a chronic illness or disability, said Heather Summerhayes Cariou, author of "Sixty Five Roses: One Family's Story of Love, Loss and Survival," a book about growing up with a sister and brother with cystic fibrosis.

"You lose the future you've had for yourself and your family," Summerhayes Cariou said. "You lose your imagined future." Reality sets in -- the demands of care mean the child's siblings are going to live a different life than they had before the diagnosis.

"Whatever relationships were with extended family members, those start to change," Summerhayes Cariou said. "As good as extended family and friends hope to be, they can never fully understand what you are going through."

Diagnosis brings on a lot of emotions. Parents feel shame and guilt, Summerhayes Cariou said.

"Those feelings are complicated, hard to deal with and not readily shared," she said.

While parents deal with feelings of guilt, well siblings often feel invisible.

"They tend to assume some of the burdens of care," Summerhayes Cariou said. "They are required to feel and cope with things well beyond their years."

As siblings start becoming caregivers, the dynamics of the family again change.

"The family dynamic starts to revolve around that one person, sucking the air out of the room," Summerhayes Cariou said. "It's hard (for other family members) to hang on to their own identities."

A parent can also lose their identity in caring for their disabled child. For some parents it is an all-consuming task, one that is both mentally and physically exhausting.

Heber Martinez stopped talking when he was 5. Before that his mother, Cristela Diaz, just thought he was a little slow to catch on, but doctors eventually diagnosed him with autism.

Twenty-two years later, Martinez still needs a high level of care. Diaz spends many nights hovering by her adult son's bed, making sure he doesn't remove the machine that controls his sleep apnea. During the day, the 27-year-old Martinez accompanies his mom almost everywhere she goes.

Diaz's only personal time comes when her son attends Options. "He is a quiet boy, but I have to be with him 24 hours a day," Diaz said.

Diaz said the need for constant care put stress on the couple's marriage.

"(My husband) loved him a lot," she said. "But he was embarrassed by him in public. He never wanted to take him out, but at home he was different."

The couple eventually divorced.

Over the years, Diaz has found that accepting her son and applauding his successes has made life a lot better. She focuses on what her son can do and has done, not what he can't do or won't be able to do.

She smiles, as she says that since starting at Options, Martinez has lost a pant size and is better able to control what he eats. Martinez had been struggling with overeating and not exercising, Diaz said. The center gives her a sense of freedom knowing that she can leave her son in a safe place.

"I love this place," she said.

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