One mom's struggle to keep her son alive in the state's care highlights the challenges of supporting the developmentally disabled

Frye says she cannot comment on any of her past or present clients and would not talk to New Times for this story.

Drew was never allowed to return to Frye's house.

His mother says she didn't know what happened until a staff member at the day center called to ask about it.

And she had no idea what would happen to her son until 5:30 that afternoon when she got an e-mail telling her Drew was being taken to a temporary home in Buckeye. When she called the number for the home, no one answered.

An hour later, she received another e-mail. It said there was a change of plans: Drew was going to a different temporary home in Laveen.

"At this point, no one seems to know where my son is," she says. "I'm really on edge."

Just after 7 p.m., as a monsoon was brewing, Bolender got a phone call from a social worker she'd never met, from a private agency she'd never heard of.

"Hi, I picked up your son and I have him with the woman who's going to take care of him," said the social worker. "Can you tell us if he has any medical conditions we should be aware of?"

The social worker had no paperwork for Drew and had none of his medications with her. Drew takes seven types of medication daily just to maintain his health. If Drew has a seizure, it won't stop without treatment. He needs constant access to emergency medication that can stop his seizures and save his life.

"I'll be right there," Bolender told her. "Don't leave."

She grabbed the few extra pills she had for Drew at her house and drove quickly through the storm, praying her son wouldn't have a seizure before she got to him, praying that she would reach him before the roads flooded.

When she arrived at the house, the social worker was gone. Drew was alone with his new caretaker, who was "very nice" but did not speak English well enough to read her son's pill bottles, Bolender says.

For two hours, Bolender wrote instructions, explained Drew's disorder, and told the caretaker what to do if he had a seizure. Then she left to go home.

She hadn't driven two miles down the road before her cell phone rang.

"He is seizing. He is seizing," the caretaker screamed into the phone.

By the time Bolender returned to the house, her son had been in full seizure for six minutes. During a seizure, Drew loses consciousness and has difficulty breathing — sometimes, he even stops. His muscles contract and relax violently and he is danger of biting his cheek or tongue.

The caretaker had not called 911. When, following Bolender's instructions, she got a dispatcher on the phone, she panicked.

"She was so upset she just started talking in Korean. She couldn't tell them where she lived or why they needed to come," says Bolender. "As I'm holding Drew down, she held the phone up to me so I could tell them."

By the time the ambulance arrived, Drew had been seizing for half an hour.

Precious minutes were lost that night because Bolender didn't have access to Drew's emergency medication.

"When Drew has a seizure, there are only three outcomes," Bolender says. "He could be fine, he could suffer brain damage, or he could die."

Drew survived but stayed in the hospital for three days.

That night, his exhausted 56-year-old mother e-mailed a family friend. "Long night in ER," she wrote. "Big shit hitting big fans all over the place today. No sleep for 37 hours in a row now."

That was in July. It's now the end of February.

"We are trapped after 10 months of this crap," says Bolender. "And we still don't have a permanent placement for Drew."

Drew's life has been hard since he was born, on August 5, 1979, in Dubuque, Iowa. Though BJ's pregnancy with her second child was normal, it was obvious from the moment Drew was born that something was wrong.

After Drew was born, a doctor pulled his father aside and held a light up to the baby's head. It shone through so strongly that the doctor initially thought Drew didn't have a brain. When CT scans came back later, the doctor put them on a light box to show BJ.

"Oh, I get it. The light parts [on the scan] are his brain and the dark parts are the water," she said to the doctor.

But it was the other way around.

"That was when it hit me," she says. "You could not see any brain at all."

Drew was transferred to the hospital at the University of Iowa in Iowa City that night.