STRUGGLING TO RAISE DISABLED KIDS : MODESTO-AREA MOM CHARGED IN STARVATION CASE PUTS FOCUS ON PARENTS' PLIGHT.

Byline: Cheri Matthews Scripps-McClatchy Western Service

Patty Hudson of Escalon, the mother of premature twins, felt like the world was crashing down on her.

Pregnant with her third child, she had one twin who was starting to walk. The other, diagnosed with cerebral palsy, had developed eye problems. The agency that had provided the family with nursing and respite care for 18 months suddenly dropped her from the system.

``I started screaming like a lunatic in my pillow,'' Hudson said. ``What was I supposed to do next? Where should I turn? You don't get an instruction manual when you become a parent of children with disabilities.''

Hudson's twin daughters now are 6, just a few months older than the disabled twin daughters of Tanya Kaye Walker of Ceres. Walker is facing charges of attempted murder, torture and child endangerment after her daughters were found near death from starvation. Her twins remain in serious but stable condition at Childrens Hospital in Oakland.

Other parents of children with disabilities in the Modesto area are watching the Walker case attentively.

One mother said she has 1-year-old twins with cerebral palsy, a nervous system disorder resulting from damage to the brain at or near birth. They also have a lung disease and, at 12 pounds each, they suffer from ``failure to thrive'' syndrome. The mother is pregnant with her fourth child.

``I feel really sorry for Tanya Walker, because I know how hard it is for me,'' said the mother, who didn't want her name used. ``What if I get postpartum depression? What if the nursing care is cut off? What if my husband leaves me?''

Another mother, Pat Hood, said she doesn't understand how a parent could abuse a child in the way Walker is accused. Hood has a 6-year-old son, also with cerebral palsy and suffering from seizures. She said she has found a lot of support.

``I see all kinds of avenues for parents like her. When I think about all the people who are in and out of my house to see my son, I wonder how this could happen. Sometimes you have to push, sometimes you have to ask for help, but I know the services are there.''

Depending on the individual and the community, services can include anything from special classes in a public school to expensive medical equipment and food supplements. The services can come from a number of agencies.

That's part of the problem, according to Colleen Garcia, executive director of the Children's Crisis Center.

``The sheer number of resources parents have available to them can be overwhelming,'' she said. ``First they have to take the initiative and find out what's out there. Then they have to go out to the different appointments, fill out the paperwork and follow through with it.''

Parents under stress often have trouble staying focused, Garcia said.

Just what kind of stress do parents of children with disabilities face?

``Parents tend to feel guilty, whether they caused the disability or not,'' said Nora Baladerian, a project director in Los Angeles with the Spectrum Institute, which studies disabilities and child abuse.

``The question you have to ask is, what are the personal resources of the parent. Without the resources, there will be greater stress, and that greater stress could lead to abuse.''

Studies show that children with disabilities are abused between two and 10 times more often than children in general, Baladerian said. Most are abused by a parent or care-giver.

Nancy Cheatham said she recognized she couldn't take care of two disabled sons. She had started using methamphetamine after her sons were born with Lowe Syndrome, a rare, genetic disease characterized by blindness, seizures and kidney problems.

``I'd get depressed watching all these kids the same age out riding their bikes and thinking that my sons would never do that. Sometimes I blamed myself. That's when I started using drugs.''

Seven years ago, she gave up guardianship of her oldest son to a Modesto care home.

``I was so strung out, I couldn't take care of him. He was too heavy for me to lift. He wasn't happy at home with just me. He wanted his dad, and his dad wouldn't come around. I was using his SSI (Supplemental Security Income) to pay for my drug habit.''

Now Cheatham is off drugs. The son who lives with her is 10, and he attends special-education classes. Medi-Cal and California Children's Services pay for his wheelchair and medicine. Valley Mountain Regional Center provides some baby-sitting and transportation.

``I've learned that the agencies can help you, but you've also got to help yourself,'' Cheatham said.

Patty Hudson learned she had to advocate for her children - and pay for many of the services herself.

Her twins no longer qualified for assistance from the Valley Mountain Regional Center because after 18 months they weren't considered more than 25 percent delayed in their development. Neither VMRC nor her pediatrician gave her referrals for physical therapy and speech therapy.

Through the Mid-Valley Mothers of Multiples group in Modesto, Hudson found emotional and practical support, like child care. She enrolled the twins in special-education classes in Escalon and found a private speech therapy program at the University of the Pacific.

Other parents remain frustrated with the system, which they describe as a slew of governmental agencies that offer only an illusion of support.

``I've literally begged for help and gotten nothing,'' said Debbie Salas, the mother of a 10-year-old with cerebral palsy. ``I've been told my daughter was being denied therapy because the agency was cutting down on staff. Budget problems. No more funding. Then I was told she was not a priority.''

After nine years, Children's Services notified Salas that it would no longer be providing her services. Letters Salas has received for the last five months state she has not turned in various paperwork. She says she has mailed in the required forms and delivered copies in person. No one, she said, has contacted her personally.

Salas isn't sure when payment for the food will be cut off. She estimates the special food would cost her $500 a month. The feeding tubes, replaced every day, would add to the cost.

California Children's Services would not comment on her case.