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

"Visualize lumpy, gray Jell-O," the doctor told Bolender. "We're going to stick a soda straw in and hope we stick it in the right place."

Though it was obvious Drew needed the surgery right away, the doctor advised against it.

"They said it would lead us to hope for the future and there is no hope for the future," Bolender says.

She wondered what would happen if they didn't go forward with the surgery.

Drew's head would swell, larger and larger. It would reach the size of a watermelon. He would be transferred to a nursing home, where IVs would keep him alive until his heart couldn't handle the strain. And then he would die.

"I said [to the doctor], 'There's no question. He's having the surgery,'" says Bolender. "I asked him to tell me again all the things he wouldn't be able to do."

Never smile, never have an emotion, never speak, never breast feed.

"I said, 'Wait a minute. Did you just say he won't be able to breast feed?' They said, 'Yes.' I said, 'Do you know that I've been nursing him for a whole week?'" she recalls. "That was the first moment we said to ourselves, 'Doctors don't know everything.'"

They went ahead with the surgery.

That was BJ's first lesson in a crash course on mothering a disabled child. She got a lot more instruction that year. Drew had four operations before his first birthday. When Drew came home, the family still didn't know what to expect.

"When we took him home from the hospital, we assumed we were taking him home to die," she says.

But Drew lived. Drew's older brother, Cameron, learned to help with the baby, and later, the Bolenders had another son, John.

Therapists continued to tell the Bolenders things Drew would never do.

"We were told just before he was 4 that he would never walk, and one month later, he was toilet-trained and [walking]," she says.

From the time Drew was 5 until he turned 10, the Bolenders visited three bankruptcy lawyers. Those trips were a disheartening financial wake-up call for BJ, a teacher, and Daryl, a social worker.

"We were advised that we were the kind of family that would have to [declare bankruptcy] every seven years. We just couldn't pay our bills," she says. "They were telling us they knew Drew would have lifelong needs and we were not likely to come into money to take care of it. Realistically, it's going to happen over and over."

Eventually, the couple divorced. Drew kept growing and earned his high school diploma, something his mom is very proud of.

When Drew was 19, he moved into his first group home in Iowa City because Daryl's new wife didn't want him at home and BJ couldn't support him on her own. Drew was happy in his group home until five years ago, when Daryl died after a massive heart attack.

Drew finds it difficult to talk about his dad. It upsets him too much. On his personal Web site (designed by Drew), he's written a touching tribute to his father: "My dad and I were really good together. We were connected in a way that we were like Super Glue."

Shortly after Daryl's death, BJ was in a car accident that put her in the hospital.

She realized that if she were to die, Drew would be alone in the Iowa system with no family. Cameron wanted his mother and brother to move to Arizona, where he'd started a family. Bolender knew they had to go, so she packed Drew into her $600 car and headed west.

But she was worried that services for Drew would not be as good as they'd been in Iowa.

"What I found made me sick," she says.

In some ways, Drew has been lucky Others have died in DDD's care.

In 2001, 26-year-old Iliana Solomon suffered a seizure and drowned in her group home bathtub when her attendant left her alone to go smoke a cigarette. The attendant, Catherine Cash, had been hired, fired, and rehired by the agency several times over a 10-year span.

In August 2001, according to court documents, Cash was put on probation for calling a client a "spoiled brat," for forcing clients to sit on their hands as punishment, and for talking about the sexual orientation of her coworkers.

In November 2001, Iliana Solomon drowned on her watch.